Social Medicine

in the 21st Century

Thematic collections :: Volume 1

Social Medicine
in the 21st Century

Thematic collections :: Volume 1

 Social Medicine in the 21st Century, 107p
iMedPub :: Thematic collections :: Volume 1

Foreword

First Edition, 2011

PLoS Medicine’s October 2006 issue contained a special

collection of eleven magazine articles and five research

papers devoted entirely to social medicine.

The collection featured many of the leaders in the field,

including Paul Farmer, Arthur Kleinman, David Satcher,

Nancy Scheper-Hughes, Dorothy Porter, and Leon Eisenberg.

The Kaiser Family Foundation has conducted interviews

with two of the authors of papers in this collection, David

Satcher and Paul Farmer.

Now iMedPub brings this collection to you within a book.

Cover illustration: Giovanni Maki

Design and layout: Marta Araya Marroni

bkmarta@gmail.com

Publisher: Internet Medical Publishing

http://www.imedpub.com/

Disclaimer: This book contains articles published under Creative Commons Attribution License. Creative
Commons Attribution License allows commercial re-use of all content.
ii iii
Social Medicine in the 21st Century
Editorial
Contents Social Medicine in the Twenty-First Century
The PLoS Medicine Editors, Scott Stonington, Seth M. Holmes
Editorial
Social Medicine in the Twenty-First Century . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Debate
Is It Ethical for Patients with Renal Disease to Purchase Kidneys from
the World’s Poor? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
I
n its launch issue in October 2004,
Essays PLoS Medicine signaled a strong
interest in creating a journal that
went beyond a biological view of health
Health Is Still Social: Contemporary Examples in the Age of the Genome . . . . . . . . 7
to incorporate socioeconomic, ethical,
and cultural dimensions. For example,
How Did Social Medicine Evolve, and Where Is It Heading? . . . . . . . . . . . . . . . . . . . . 11 that first issue contained a policy paper
on how the health community should
Anthropology in the Clinic: The Problem of Cultural Competency and respond to violent political conflict [1],
How to Fix It . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 a debate on whether health workers
should screen all women for domestic
“Anecdotal Evidence”: Why Narratives Matter to Medical Practice . . . . . . . . . . . . . . . 21 violence [2], and a study on the global
distribution of risk factors for disease
Is There a Global Bioethics? End-of-Life in Thailand and the Case for [3].
Local Difference . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Two years on, our October 2006
issue takes our interest even further.
It contains a special collection of ten
Ethnic Disparities in Health: The Public’s Role in Working for Equality . . . . . . . . . . . 27 magazine articles and five research
papers devoted entirely to social
Policy Forums medicine. We are delighted that the
collection features many of the leaders
Structural Violence and Clinical Medicine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 in the field, including the renowned
medical anthropologists Paul Farmer
Time to Regenerate: Ecosystems and Health Promotion . . . . . . . . . . . . . . . . . . . . . . . 36 and Arthur Kleinman, the former
United States Surgeon General David
Student Forum Satcher, and the Harvard professor of
social medicine and psychiatry Leon
Eisenberg.
Why Should Medical Students Care about Health Policy? . . . . . . . . . . . . . . . . . . . . . . 40
Most of our readers have welcomed
our inclusive view of what a medical
Research Articles journal should highlight. Some,
however, have been critical, suggesting
An Ethnographic Study of the Social Context of Migrant Health in the that we should publish “less soft stuff”
United States . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 and more “hard science.” These critics
might argue that in this era of stem
Indigenous Health and Socioeconomic Status in India . . . . . . . . . . . . . . . . . . . . . . . . 61 cell research and the human genome
project, of molecular medicine and
Insights into the Management of Emerging Infections: Regulating DNA microarray technology, the
Variant Creutzfeldt-Jakob Disease Transfusion Risk in the UK and the US . . . . . . . . 72 notion of social medicine seems
irrelevant and outmoded.
But the ultimate role of a medical
Reconstructing Tuberculosis Services after Major Conflict: Experiences journal is surely to contribute to
and Lessons Learned in East Timor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 86 health improvement, and that means
looking not just at molecules but at
Reinterpreting Ethnic Patterns among White and African American Men the social structures that contribute
Who Inject Heroin: A Social Science of Medicine Approach . . . . . . . . . . . . . . . . . . . . 97 to illness. The stark fact is that most
PLoS Medicine | www.plosmedicine.org
iv iMedPub :: Thematic Collections :: Volume 1 iMedPub :: Thematic collections :: Volume 1
disease on the planet is attributable
to the social conditions in which
people live and work [4]. The socially
disadvantaged have less access to
health services, and get sicker and die
earlier than the privileged. Despite
impressive technological advances in
medicine, global health inequalities are
worsening.
“All medicine is inescapably social,”
said Leon Eisenberg [5], and we
entirely agree. Take, for example, the
announcement of the sequencing
of the human genome, which the
BBC predicted would mean we
could “banish inherited disorders,
screen people for their vulnerability
to diseases, tailor treatment to an
individual’s genetic make-up, create
thousands of new drugs and extend
human lifespan” [6]. In time, perhaps
these predictions will be partly or fully
realized. What is certain, though, is that
the human genome project has also
opened up an immediate Pandora’s
Box of complex ethical, legal, and
social issues. These issues include
ensuring equity in patients’ access to
the fruits of the project and balancing
the benefits, risks, and economic costs
of genetic screening. Even the human
genome is “inescapably social.”
And so, to complement the papers
on molecular medicine that we have
published over the last two years—such
as papers on genetic mutations that
confer resistance to cancer drugs
[7,8] or on differentiation of insulin-
producing cells from human neural
progenitor cells [9]—we have also
dedicated space in the journal to
considering the large-scale social forces
that give rise to human disease and
affect its distribution around the globe.
These include economics, politics, legal
institutions, and power structures.
Throughout our special collection,
one pioneer in understanding these
large-scale social forces is repeatedly
acknowledged—Rudolf Virchow.
In his 1848 medical report of an
outbreak of typhus in Silesia, Virchow
concluded that poverty and living
conditions, not biology, were the
prime causes of the epidemic [10].
1661
Social Medicine in the 21st Century
While an understanding of these large-
scale forces remains social medicine’s
base and one of its most important
tasks, this special collection shows
the ways in which finer-grained social
forces have an equally important
effect on health. The different levels
at which social forces operate can be
considered as four primary domains,
beginning in the clinical encounter
and opening outward to society and
the globe.
The first domain, then, is made up
of the cultural and social aspects of
the relationship between patients and
health professionals. This relationship
is a social negotiation affected by
beliefs, practices, interests, and power
dynamics. Communication within
this relationship can have a powerful
impact upon health outcomes. The
influence of this relationship upon
health is not limited to Western,
allopathic, biomedical systems but is
equally as important in other medical
systems throughout the world [11].
The second domain involves
patients’ beliefs, practices, and
experiences. Patients’ experiences
of and responses to suffering are not
confined to the clinical encounter
and vary dramatically among different
populations. Understanding the
specifics of people’s everyday lives is
essential to engaging with them and
their illnesses [12,13].
The third domain is the culture of
medicine itself. Health professionals
and institutions have their own
cultures that also go beyond clinical
interactions. Health systems and
health research both contain agendas,
Citation: The PLoS Medicine Editors, Stonington S,
Holmes SM (2006) Social medicine in the twenty-first
century. PLoS Med 3(10): e445. DOI: 10.1371/journal.
pmed.0030445
DOI: 10.1371/journal.pmed.0030445
Copyright: © 2006 The PLoS Medicine Editors et al.
This is an open-access article distributed under the
terms of the Creative Commons Attribution License,
which permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
E-mail: medicine_editors@plos.org
October 2006 | Volume 3 | Issue 10 | e445

Social Medicine in the 21st Century Social Medicine in the 21st Century

Table 1. The Four Domains of Social Medicine in the Special Collection Seth M. Holmes and Scott Stonington are in The PLoS Medicine Debate
the Department of Anthropology, History and
Domain of Social Authors Title and Reference

Is It Ethical for Patients with Renal Disease

Social Medicine, School of Medicine, University
Medicine
of California San Francisco, San Francisco,
Relationship between Arthur Kleinman and Anthropology in the clinic: The problem of cultural California, United States of America. They acted

to Purchase Kidneys from the World’s Poor?

patients and health
professionals
Patients’ beliefs, practices,
and experiences
The culture of medicine
Peter Benson
Philippe Bourgois,
Alexis Martinez, Alex Kral,
Brian R. Edlin, Jeff Schonberg, science of medicine approach. PLoS Med 3(10):
and Dan Ciccarone
Tarif Bakdash and
Nancy Scheper-Hughes
Dorothy Porter
Scott Stonington and
Pinit Ratanakul
Maya L. Ponte
competency and how to fix it. PLoS Med 3(10):
e294.
Reinterpreting ethnic patterns among white and
African American men who inject heroin: A social
e452.
Is it ethical for patients with renal disease to
purchase kidneys from the world’s poor? PLoS Med
3(10): e349.
How did social medicine evolve, and where is it
heading? PLoS Med 3(10): e399.
Is there a global bioethics? End-of life in Thailand
and the case for local difference. PLoS Med 3(10):
e439.
Insights into the management of emerging
infections: Regulating variant Creutzfeldt-Jakob
Disease transfusion risk in the UK and US. PLoS
Med 3(10): e342.
as Guest Editors of this special collection on social
medicine.
References Tarif Bakdash, Nancy Scheper-Hughes
1. Zwi AB (2004) How should the health
community respond to violent political
conflict? PLoS Med 1: e14. DOI: 10.1371/ grandparent’s home. The Tribune, India reported that a 42-
journal.pmed.0010014 year-old Nepalese man named Man Dhoj Tamang sold one of
2. Taket A, Wathen CN, MacMillan H (2004)
Should health professionals screen all women
his kidneys to pay off his debts and buy a piece of land [1].
for domestic violence? PLoS Med 1: e4. DOI: Having trained and taught in North America for almost 14
10.1371/journal.pmed.0010004 years, my initial reaction to these reports was that such organ
3. Rodgers A, Ezzati M, Vander Hoorn S, Lopez
AD, Lin RB, et al. (2004) Distribution of major sales were immoral. I was aware that many medical societies
health risks: Findings from the Global Burden and health-care organizations took the position that selling
of Disease study. PLoS Med 1: e27. DOI: organs is unethical. For example, the Ethics Committee of
10.1371/journal.pmed.0010027
4. Irwin A, Valentine N, Brown C, Loewenson the Transplantation Society advises transplant surgeons that:
R, Solar O, et al. (2006) The Commission on “No transplant surgeon/team shall be involved directly or
Social Determinants of Health: Tackling the
social roots of health inequities. PLoS Med 3:
indirectly in the buying or selling of organs/tissues or in
e106. DOI: 10.1371/journal.pmed.0030106 any transplant activity aimed at commercial gain to himself/

B
Rafael Campo “Anecdotal evidence”: Why narratives matter to 5. Eisenberg L (1999) Does social medicine still ackground to the debate: In many countries, the number
medical practice. PLoS Med 3(10): e423. matter in an era of molecular medicine? J
of patients waiting for a kidney transplant is increasing.
Rajesh Gupta Why should medical students care about health
Urban Health 76: 164–175.
6. European Commission (2004) Ethical, But there is a widespread and serious shortage of kidneys
Selling one’s own kidney would
Nelson Martins, Paul M.
policy? PLoS Med 3(10): e199.
Reconstructing tuberculosis services after major
legal and social aspects of genetic testing:
Research, development and clinical
for transplantation, a shortage that can lead to suffering and be better than enduring the horrors
Kelly, Jocelyn A. Grace, and conflict: Experiences and lessons learned in East applications. Luxembourg: Office for Official
Publications of the European Communities.
death. One approach to tackling the shortage is for a patient of poverty.
Anthony B. Zwi Timor. PLoS Med 3(10): e383. with renal disease to buy a kidney from a living donor, who
Available: http:⁄⁄ec.europa.eu/research/
The social determinants Timothy H. Holtz, Seth M. Health is still social: Contemporary examples in the is often in a developing country, a sale that could—in theory
conferences/2004/genetic/pdf/report_en.pdf. herself or an associated hospital or institute” [2]. The
of disease Holmes, Scott Stonington, age of the genome. PLoS Med 3(10): e419. Accessed 22 September 2006. at least—help to lift the donor out of poverty. Such kidney
7. Pao W, Wang TY, Riely GJ, Miller VA, Pan Q,
World Health Organization and the International Congress
and Leon Eisenberg sales are almost universally illegal. Proponents of kidney
David Satcher Ethnic disparities in health: The public’s role in et al. (2005) KRAS mutations and primary on Transplantation in Developing Countries have also
resistance of lung adenocarcinomas to gefitinib sales argue that since the practice is widespread, it would
working for equality. PLoS Med 3(10): e405. condemned the selling of organs, arguing that it is a coercive
or erlotinib. PLoS Med 2: e17. DOI: 10.1371/ be safer to formally regulate it, and that society should
Paul E. Farmer, Bruce Nizeye, Structural violence and clinical medicine. PLoS journal.pmed.0020017 practice that exploits the poor [3–5].
respect people’s autonomous control over their bodies.
Sara Stulac, and Salmaan Med 3(10): e449. 8. Pao W, Miller VA, Politi KA, Riely GJ, Somwar But then I remembered my own experience of poverty,
R, et al. (2005) Acquired resistance of lung Critics express concern about the potential for exploitation
Keshavjee standing in long lines to buy a few oranges or a little bread,
Seth M. Holmes An ethnographic study of the social context of adenocarcinomas to gefitinib or erlotinib and coercion of the poor, and about the psychological and
is associated with a second mutation in the having to live without electricity and running water, and
migrant health in the United States. PLoS Med physical after-effects on the donors of this illegal kidney
EGFR kinase domain. PLoS Med 2: e73. DOI: sleeping on the floor with roaches crawling over my face. And
3(10): e448. 10.1371/journal.pmed.0020073 trade.
Colin Butler and Sharon Friel Time to regenerate: Ecosystems and health 9. Hori Y, Gu X, Xie X, Kim SK (2005)
then it struck me that poverty itself is a kind of coercion. None
promotion. PLoS Med 3(10): e394. Differentiation of insulin-producing cells from of the decisions that any poor person makes are made on the
human neural progenitor cells. PLoS Med 2: basis of free will—instead, these decisions are all dependent
S. V. Subramanian, Indigenous health and socioeconomic status in
e103. DOI: 10.1371/journal.pmed.0020103
George Davey Smith, and India. PLoS Med 3(10): e421. 10. Virchow R (1879 [1985]) Report on the typhus
Tarif Bakdash’s Viewpoint: Poor People Should on the person’s dire financial situation.
Malavika Subramanyam epidemic in Upper Silesia (1848). In: Rather Have the Right to Exercise Their Autonomy by
LJ, editor. Rudolf Virchow: Collected essays on
DOI: 10.1371/journal.pmed.0030445.t001
public health and epidemiology. Canton (MA): Selling Their Organs
Science History. pp. 205–319. Funding: TB received no specific funding for this article. Field research for NS-H’s
11. Kleinman A (1981) Patients and healers in What would you do if you had to choose between selling article was supported by grants from the Open Society Institute (Soros Foundation),
the context of culture. Berkeley: University of New York, New York, United States, and from faculty research grants, Academic
your kidney and letting your children starve? I have come to
prejudices, and beliefs that can lead colleagues argue that while the search California Press. 427 p. Senate, University of California, Berkeley, California, United States. The funders
12. Fadiman A (1998) The spirit catches you and believe that selling one’s own kidney would be better than played no role in the submission or preparation of NS-H’s article.
to certain perspectives being favored for the molecular basis of disease has
you fall down: A Hmong child, her American enduring the horrors of poverty. Living below the poverty line
as the most legitimate. Understanding been enormously fruitful, there has at doctors, and the collision of two cultures. New Competing Interests: The authors have declared that no competing interests exist.
on less than a dollar per day makes it hard for parents to feed
the culture of medicine is essential to the same time been a “desocialization” York: Noonday Press. 341 p.
13. Kleinman A (1988) The illness narratives: their children, let alone to clothe them, and organ sales offer Citation: Bakdash T, Scheper-Hughes N (2006) Is it ethical for patients with renal
understanding health professionals’ of scientific inquiry. In other words, disease to purchase kidneys from the world’s poor? PLoS Med 3(10): e349. DOI:
Suffering, healing, and the human condition. a way out of destitution.
attitudes toward illness, patients, and they say, there has been “a tendency New York: Basic Books. 284 p. 10.1371/journal.pmed.0030349
14. Adams V (2002) Randomized controlled crime:
After returning to Syria from the United States, I learned
treatments [14–16]. to ask only biological questions about
Post-colonial sciences in alternative medicine about a man who had sold one of his kidneys to help lift his DOI: 10.1371/journal.pmed.0030349
The final domain brings us, full what are in fact biosocial phenomena” research. Soc Stud Sci 32: 659–690. family out of poverty and pay for his children’s education. Copyright: © 2006 Bakdash and Scheper-Hughes. This is an open-access article
circle, back to Virchow and the large- [17]. We hope that our special 15. Gordon DR, Paci E (1997) Disclosure
practices and cultural narratives: The Arabic news Web site Al-Arabiya (http:⁄⁄www.alarabiya. distributed under the terms of the Creative Commons Attribution License, which
scale forces that shape health, which collection helps to “resocialize” our permits unrestricted use, distribution, and reproduction in any medium, provided
Understanding concealment and silence net) told the story of a young man living in the United
have become known as the social understanding of disease distributions around cancer in Tuscany, Italy. Soc Sci Med the original author and source are credited.
Arab Emirates who wanted to sell his kidney in order to
determinants of disease. The 15 papers and outcomes. � 44: 1433–1452.
16. Pigg SL (2001) Languages of sex and AIDS help his family of two wives and six children living at their Tarif Bakdash is a pediatric neurologist and Assistant Professor in Bioethics at
in the special collection each relate to in Nepal: Notes on the social production of Damascus University, Damascus, Syria. He recently completed the Master of
at least one of these four domains, as Acknowledgments commensurability. Cult Anthropol 16: 481–541. Health Science in Bioethics at The Joint Centre for Bioethics, University of Toronto,
17. Farmer PE, Nizeye B, Stulac S, Keshavjee Toronto, Ontario, Canada. E-mail: trsbakdash@yahoo.com.
shown in Table 1. We’d like to thank Philip R. Lee and Alan S (2006) Structural violence and clinical
In their compelling policy paper for Brandt for their guidance in commissioning medicine. PLoS Med 3: e449. DOI: 10.1371/ The PLoS Medicine Debate discusses important but controversial issues in clinical Nancy Scheper-Hughes is Professor of Medical Anthropology and Director of Organs
this special collection, Paul Farmer and articles for the special collection. journal.pmed.0030449 practice, public health policy, or health in general. Watch (http://sunsite.berkeley.edu/biotech/organswatch) at the University of
California, Berkeley, California, United States of America. E-mail: nsh@berkeley.edu

PLoS Medicine | www.plosmedicine.org 1662 October 2006 | Volume 3 | Issue 10 | e445 PLoS Medicine | www.plosmedicine.org 1699 October 2006 | Volume 3 | Issue 10 | e349
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Social Medicine in the 21st Century
We live in a world of startling inequities: of the 10.8
million children under age five who die each year, 10
million (more than 92 percent) live in the lower-income
countries [6]. Millions of the world’s poorest people have
no access to clean water, and no opportunities to educate
themselves or their children. It is no wonder that some of
these people sell their organs to have a glimpse of a better
life. The argument that we should protect the poor from
being exploited by banning them from selling their organs
is a myth. The poor are always exploited from the day they
are born, and in all avenues of life. The only thing of value
left for some of them is their bodies.
It is surely a kind of hypocrisy and arrogance on the part of
the rich world to reject the right of poor people to exercise
their autonomy when it comes to selling their organs. Is it
ethically justifiable to deprive the world’s poorest people of
the chance for a better life? The decision to sell one’s organs
is never taken lightly—it is often an act of great altruism
driven by the desire to create a better life for one’s family.
Abdallah Daar, Director of the Program in Applied
Ethics and Biotechnology at the University of Toronto, has
argued that the position taken by the Ethics Committee
of the Transplantation Society “has been totally useless in
stopping the increase of the buying and selling of organs”
[7]. Unfortunately, those who currently sell their organs risk
major complications because the surgery is often done under
sub-standard conditions. It would be good medical practice
for the buying and selling of organs to be taken out of the
black market and become regulated. Instead of banning
organ sales, I would add my voice to the growing number
of commentators that argue that the sale of organs should
be legalized and regulated [8–10]. Janet Radcliffe-Richards
and colleagues have argued that “all the evidence we have
shows that there is much more scope for exploitation and
abuse when a supply of desperately wanted goods is made
illegal” [10]. And the best way, they say, to avoid coercion and
exploitation of the poor in organ sales would be to ensure
“regulation and perhaps a central purchasing system, to
provide screening, counselling, reliable payment, insurance,
and financial advice.”
Of course we must address the underlying root causes of
poverty, so that people are never forced to have to sell their
bodily organs. But until we solve the problems of social,
political, educational, and economical underdevelopment we
need to face reality by legalizing and regulating organ sales in
the developing world.
Acknowledgments
I would like to thank Peter Singer, Program Director of the Master in
Health Science in Bioethics, for his guidance and teaching. The views
in this article are the author’s alone.
Nancy Scheper-Hughes’ Viewpoint: Dividing the
World into Organ Buyers and Sellers Is a Medical,
Social, and Moral Tragedy
The late Michael Friedlaender, a transplant nephrologist
at Hadassah Hospital in Jerusalem, was initially “adamant that
organ trading was wrong and would lead to terrible crimes”
[11], but he later changed his position. He described how
300 of his patients, Jews and Arabs, traveled abroad for illegal
PLoS Medicine | www.plosmedicine.org
 iMedPub :: Thematic Collections :: Volume 1
kidney transplants from paid living donors. Although a few of
these patients fell seriously ill and one died as a result of their
illicit “black market” transplant, most fared as well or better
than those transplanted safely at home with a cadaver kidney.
Friedlaender joined several respected medical colleagues and
prominent bioethicists in supporting proposed legislation in
Israel to govern regulated kidney sales [12]. Their refusal to
condemn the kidney trade helped pave the way for a global
kidney trade that harmed as well as healed people and that
engendered new antagonisms toward Israel as a global leader
in “transplant tourism.” In August 2006, the Jerusalem district
court instructed HMOs to pay kidney donors US$14,000 to
cover their expenses, essentially legalizing sales [13]. The
philosopher Janet Radcliffe-Richards and her colleagues also
called for a regulated market in organ sales: “If a living donor
can do without an organ,” they said, “why shouldn’t the
donor profit and medical science benefit?” [10].
When it comes to organ sales, the ethical conflict between
the principles of non-malfeasance (“do no harm”) and
beneficence (the moral duty to perform good acts) is being
resolved via the market principle: those able to broker or
Putting a market price on body parts
exploits the desperation of the poor.
buy a human organ should be allowed to do so. Paying
for a kidney “donation” is often described as a “win–win”
situation beneficial to both parties [10]. Patient autonomy
has become the final arbiter of medical values. Social justice
and notions of the good society hardly figure in these
discussions. Virtue in suffering and grace in dying can only
appear as patently absurd.
But the transformation of a person into a “life” that must
be prolonged or saved at any cost has turned human life into
the ultimate commodity fetish. The absolute value of a single
human life saved or prolonged at any cost ends all ethical
inquiry and erases any possibility of a global social ethic.
Meanwhile, the traffic in kidneys reduces the human content
of all the lives it touches.
The arguments for “regulation” as opposed to prohibition
have some merit, but are out of touch with the social and
medical realities in many developing countries. Often
institutions in these countries created to “monitor” organ
harvesting and distribution are weak, dysfunctional, corrupt,
or compromised by the impunity of the organ brokers, and by
outlaw surgeons willing to violate the first premise of classical
medical bioethics: above all, do no harm.
The results of the few available studies of the effects of
nephrectomy on kidney sellers in India [14] and Iran [15,16]
are clear. Even under attempts (as in Iran) to regulate and
control systems of “compensated gifting” by the Ministry of
Health, the outcomes are troubling. Paid donors are not
followed and some who encounter subsequent medical
problems are turned away. Our research among hundreds of
kidney sellers in Moldova, Romania, Turkey, the Philippines,
and Brazil has shown that many suffer post-operatively from
chronic pain, social isolation, stigma, and severe psychological
problems [17]. Their economic conditions decline following
the sale due to negative perceptions and self-perceptions
of kidney sellers as weak and disabled individuals. The
feelings of disappointment, anger, resentment, and even
1700 October 2006 | Volume 3 | Issue 10 | e349
iMedPub :: Thematic collections :: Volume 1
seething hatred by kidney sellers toward the surgeons and the
recipients of their organs suggest that the practice engenders
deep social pathologies. These outcomes have been found
in countries where kidney selling is illegal as well as in Iran,
where kidney selling is legal and regulated.
Organs Watch, an independent, university-based human
rights and research project, has provided assistance to kidney
sellers in Moldova, Brazil, and the Philippines, including
diagnostic exams and sonograms. These revealed that many
organ sellers face a range of post-operative complications
and medical problems, including hypertension and kidney
insufficiency, without access to adequate medical care
or medications (http:⁄⁄sunsite.berkeley.edu/biotech/
organswatch/pages/research.html). Kidney sellers find
themselves unemployable because they are unable to sustain
the demands of heavy agricultural or construction work,
the only labor available to men with their skills. Kidney
sellers are often alienated from their families and coworkers,
excommunicated from their churches, and excluded from
marriage. The children and spouses of kidney sellers are
subject to cruel taunts (“Your father is a one-kidney!”) and
ridicule.
In our studies, male kidney sellers suffered from exclusion
by potential employers and coworkers, and by girlfriends and
wives who labeled them as “weak,” “inadequate,” or mutilated.
“No young woman in the village will marry a man with the
tell-tale scar of a kidney seller,” a village elder in Mingir,
Moldova, told me. Even in the United States, kidney donors
have died or become comatose as a result of donation [18].
In the context of for-profit transplant tourism, nephrectomy
is a risky procedure [19].
The violence associated with kidney
selling gives reason to pause.
Bioethical arguments supporting the right to sell an
organ are based on Euro-American notions of contract and
individual “choice.” But the social and economic contexts
make the “choice” to sell a kidney in an urban slum of
Calcutta, or in a Brazilian favela or Philippine shantytown,
anything but a “free” and “autonomous” one. Consent is
problematic with “the executioner”—whether on death
row or at the door of the slum resident—looking over one’s
shoulder. Putting a market price on body parts—even a
fair one—exploits the desperation of the poor, turning
their suffering into a medical opportunity. Asking the
law to negotiate a fair price for a live human kidney goes
against everything that contract theory stands for. When
concepts such as individual agency and autonomy are
invoked in defending the “right” to sell an organ, medical
anthropologists suggest that certain “living” things are not
alienable or proper candidates for commodification.
The problems multiply when the buyers and sellers
are unrelated. In this situation, the sellers are likely
to be extremely poor and trapped in life-threatening
environments facing everyday risks to their survival,
including exposure to urban violence, transportation- and
work-related accidents, and infectious diseases that could
compromise their single kidney. And when that ultimate
“spare part” fails, kidney sellers often have no access to
dialysis, let alone to organ transplantation. Moldova, which
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Social Medicine in the 21st Century
inadvertently supplied a great many desperate kidney sellers
to affluent transplant tourists in Turkey, South Africa, and
the United States, is today one of Europe’s poorest nations.
The country has only one public transplant unit and no
capacity to guarantee dialysis to all those who may require it,
least of all to rural men who fall into the hands of ruthless
international kidney brokers.
Wouldn’t a regulated system be better than the current
state of racketeering in human kidneys? Perhaps, but how
can a national government set a price on a healthy, but
destitute, human being’s body part without compromising
essential democratic and ethical principles that guarantee
the equal value of all human lives? Any national regulatory
system would have to compete with global black markets that
establish the value of human organs based on consumer-
oriented prejudices. In today’s kidney market, Asian kidneys
are “worth less” than Middle Eastern kidneys and American
kidneys worth more than European ones. The circulation
of kidneys transcends national borders, and international
markets will coexist and compete aggressively with any
national, regulated systems. Surgeons whose primary
responsibility is to provide care should not be advocates of
paid self-mutilation by anonymous strangers even in the
interest of saving lives.
Ethical solutions to the chronic scarcity of human
organs are not always palatable to the public, but must be
considered. Foremost among these are systems of educated,
informed “presumed consent,” in which all citizens are
assumed to be organ donors at brain death unless they have
officially stipulated their refusal beforehand. This practice,
which is widespread in parts of Europe, preserves the value
of organ transplantation as a social good in which no one is
included or excluded on the basis of their ability to pay.
While many individuals have benefited from the ability
to get the organs they need through illegal circuits, the
violence associated with kidney selling gives reason to pause.
The division of the world into organ buyers and sellers is a
medical, social, and moral tragedy of immense and not yet
fully recognized proportions.
References
1. [No authors listed] (2004 August 8) Poor Nepalese trade kidneys
for money. The Tribune, India. Available: http:⁄⁄www.tribuneindia.
com/2004/20040809/world.htm#9. Accessed 16 August 2006.
2. [No authors listed] (1985) Commercialization in transplantation:
The problems and some guidelines for practice. The Council of the
Transplantation Society. Lancet 2: 715–716.
3. Zaontz L (1985) The national organ transplantation act. Bull Am Coll Surg
70: 18.
4. [No authors listed] (1991) Guiding principles on human organ
transplantation. World Health Organization. Lancet 337: 1470–1471.
5. Batchelor JR (1992) An overview of experimental work presented at the
First International Congress on Transplantation in Developing Countries.
Transplant Proc 24: 2132-2133.
6. Global Health Council (2006) Child health. Available: http:⁄⁄www.
globalhealth.org/view_top.php3?id=226. Accessed 16 August 2006.
7. Daar AS (2004) Money and organ procurement: Narratives from the real
world. In: Gutmann TH, Daar AS, Sells RA., Land W, editors. Ethical,
legal, and social issues in organ transplantation. Munich: Pabst Publishers.
pp.368–377.
8. Friedman EA, Friedman AL (2006) Payment for donor kidneys: Pros and
cons. Kidney Int 69: 960–962.
9. Matas A. Living kidney donation: Controversies and realities. The case for
a regulated system of living kidney sales. 6th Annual Joint Meeting of the
American Society of Transplant Surgeons and the American Society of
Transplantation; 2005 21–25 May; Seattle, Washington, United States.
10. Radcliffe-Richards J, Daar AS, Guttmann RD, Hoffenberg R, Kennedy I, et
al. (1998) The case for allowing kidney sales. Lancet 351: 1950–1952.
11. Friedlaender M (2002) The right to sell or buy a kidney: Are we failing our
patients? Lancet 359: 971–973.
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Social Medicine in the 21st Century
12. Siegel-Itzkovich J (2003) Israel considers paying people for donating a
kidney. BMJ 326: 126.
166: 1790–1799.
17. Scheper-Hughes N (2006) Global justice and the traffic in human organs.
Essay
13. Ilan S (2006 August 3) HMOs must pay organ donors their expenses. In: Gruessner R, Bendetti E, editors. Living donor organ transplantation.
Haaretz. Available: http:⁄⁄www.haaretz.com/hasen/pages/ShArt.
jhtml?itemNo=745823. Accessed 19 September 2006.
14. Goyal M, Mehta RL, Schneiderman LJ, Sehgal AR (2002) Economic and
New York: McGraw-Hill. Chapter 4.2. In press.
18. [No authors listed] (2001 February 15) Man keeps vigil for comatose wife
who gave him kidney, life. The Holland Sentinel. Available: http:⁄⁄www.
Health Is Still Social: Contemporary
health consequences of selling a kidney in India. JAMA 288:1589–1593. hollandsentinel.com/stories/021501/loc_comatose.shtml. Accessed 16
15. Zargooshi J (2001) Iranian kidney donors: Motivations and relations with
recipients. J Urol 165: 386–392.
16. Zargooshi J (2001) Quality of life of Iranian kidney “donors.” J Urol
August 2006.
19. Abecassis M, Adams M, Adams P, Arnold RM, Atkins CR, et al. (2000)
Consensus statement on the live organ donor. JAMA 284: 2919–2926.
Examples in the Age of the Genome
Timothy H. Holtz*, Seth Holmes, Scott Stonington, Leon Eisenberg
I
n 1999, Leon Eisenberg wrote
an essay entitled, “Does social
medicine still matter in an era of
molecular medicine?” [1]. Anticipating
the scientific discussion that would
accompany the complete mapping
of the human genome, followed by
hubristic predictions of an end to
disease through the introduction
of gene-based therapy, Eisenberg
reminded his readers of the inherent
social basis of disease causation.
“The developments in molecular
biology highlight the salience of the
social environment and underscore
the urgency to rectify inequity and
injustice. All medicine is inescapably
social,” he wrote.
In this Essay, we revisit those
concerns and expand them to discuss
the current state of scholarship on the
social causes of, experiences of, and
responses to disease. We contend that
social medicine is as important now
as it has ever been. The field of social
medicine includes various social and
cultural studies of health and medicine
[2], and in this article, we will focus
on one domain of these studies—the
social roots of disease—to illustrate
the contemporary importance of social
medicine.
Contemporary Examples
The final sequencing of the human
genome was announced in 2001 and
greeted with great fanfare. Scientists
have since cloned the embryo of a
sheep, followed by a dog, cow, horse,
The Essay section contains opinion pieces on topics
of broad interest to a general medical audience.
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mule, and mouse. With automated
DNA sequencing, the genetic code may
soon be cracked for nearly every major
animal phylum. Many scientists are
hopeful that these developments will
eventually produce laboratory-based
gene therapies that will cure many
human diseases. What is invariably
lost in these celebrations of scientific
advances is awareness that human
social organization is the primary
determinant of how diseases are
distributed in society, and that much of
human disease results from preventable
social factors. This inextricable link
between social inequality and ill
health is seen in nearly every field of
medicine.
Environmental disasters. As a first
example, consider the recent global
environmental disasters, which, natural
or unnatural, laid bare the inequalities
that cut across society. The years
2004 and 2005 were terrible years for
“natural” disasters—the Asian tsunami
on December 26, 2004 [3], Hurricane
Katrina in September 2005 [4], and the
Kashmir earthquake in October 2005
[5]. Although nature triggered these
events, there was nothing “natural”
about the extent to which certain
people were more likely to die. All
disasters are shaped by the context and
hierarchy of human social organization.
The role of human behavior and
social organization in determining
who was at risk is an ignored but vital
aspect of disasters. In a landmark
study, sociologist Eric Kleinenberg,
researching the Chicago heat wave
of 1995, found that the mortality
attributed to the disaster could only be
fully understood with a “social autopsy”
of the event. Without “de-naturalizing”
the event, its outcomes and its
relationship with social inequalities and
local policies remained obscure [6].
There is no better illustration of the
need for a social autopsy of a disaster
than the devastation wrought on
urban New Orleans and surrounding
communities by Hurricane Katrina
[7]. Because of extensive flooding in
1663
Social Medicine in the 21st Century
DOI: 10.1371/journal.pmed.0030419.g001
The devastation wrought by Hurricane
Katrina exposed underlying social
inequalities
(Photo: Waving Goodbye, Abigail Hankin)
the city, more than 75% of the city’s
500,000 residents became internally
displaced virtually overnight. Most
of those who could not escape the
storm were poor, living in historically
economically deprived communities.
Many of these communities were also
predominately African American, such
Funding: The authors received no specific funding
for this article.
Competing Interests: The authors have declared
that no competing interests exist.
Citation: Holtz TH, Holmes S, Stonington S, Eisenberg
L (2006) Health is still social: Contemporary examples
in the age of the genome. PLoS Med 3(10): e419. DOI:
10.1371/journal.pmed.0030419
DOI: 10.1371/journal.pmed.0030419
Copyright: © 2006 Holtz et al. This is an open-access
article distributed under the terms of the Creative
Commons Attribution License, which permits
unrestricted use, distribution, and reproduction in
any medium, provided the original author and source
are credited.
Timothy H. Holtz is at the Institute of Human Rights
at Emory University, and in the Department of
Family and Preventive Medicine, Emory University
School of Medicine, Atlanta, Georgia, United States
of America. Seth Holmes and Scott Stonington are in
the Department of Anthropology, History, and Social
Medicine, School of Medicine, University of California
San Francisco, San Francisco, California, United States
of America. Leon Eisenberg is the Maude & Lillian
Presley Professor of Social Medicine and Professor of
Psychiatry, Emeritus, Harvard Medical School, Boston,
Massachusetts, United States of America.
* To whom correspondence should be addressed.
E-mail: tholtz@igc.org
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Social Medicine in the 21st Century
as the hard-hit Lower Ninth Ward.
Most residents who stayed behind and
bore the full impact of the category
5 hurricane (it was downgraded to
category 3 by the time it hit the coast)
did not have the luxury of choosing
to leave; they had no option but to
stay. They had neither cars nor ready
access to transport for evacuation. Who
lived or died was more a reflection of
available housing and transportation
options, not biologic risk factors. The
disaster may have been “natural” in
a meteorological sense (although
some now argue that global warming
has increased the probability of
hurricanes), but it was the “unnatural”
social forces—specifically class and
race—that determined who lived and
who died.
Health disparities. Though Katrina
unfolded before our eyes on television,
greater tragedy has been playing out
for centuries in United States society
in morbidity and mortality differentials
between socially defined racial groups,
particularly between whites and blacks.
The overall death rate for African
Americans, today, is comparable to the
rate for white Americans some 30 years
ago. This translates into 100,000 African
Americans dying every year (most
from chronic diseases) who otherwise
would not die if the death rates were
similar between the two groups [8].
Disparities in infectious diseases at
the beginning of the 20th century are
now being replicated in disparities in
cardiovascular disease, cancer outcomes,
and many other chronic diseases at the
beginning of the 21st century [9].
Although the prevalence of heart
disease and diabetes is two to three
times higher in African Americans
than in whites, representative surveys
of Caribbean populations of African
origin have revealed prevalence rates
two to five times lower than those of
blacks in America or Britain [10]. This
should give pause to those searching
for solely biologic explanations of racial
disparities in disease. The disparities in
these rates in the US are partially due
to socially patterned behaviors. The
persistent differences are also strongly
related to social disparities such as
residential segregation, neighborhood
quality, and labor conditions that
create, contribute to, and exacerbate ill
health [9]. In addition, white and black
patients presenting with the same signs
and symptoms are given significantly
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different medical care, based on their
perceived racial or ethnic identity [11].
Despite pernicious associations
between race and inequality, modern
medicine pushes ahead with efforts
to produce race-specific therapy for
diseases such as heart disease and
diabetes. In June 2005, the first “race-
specific” patented drug (isosorbide
dinitrate combined with hydralazine
hydrochloride, or BiDil) was approved
for the treatment of heart failure in
African Americans [12]. The drug
is a combination of two generic
medications that have been off
patent for years and widely used to
control heart failure. Through clever
marketing, the combination drug was
presented to the US Food and Drug
Administration as a “race-specific”
drug, after initially being denied a
patent—the first US drug to be based
on a patent formulated in terms of its
benefit to a specific racial group. The
approval of BiDil presages a trend in
the pharmaceutical industry to use
race as a proxy “genetic” biologic
marker to address health disparities
through commercial drug development
[13]. What might be called the
“desocializing” or “geneticizing” of race
has potentially worrisome implications
(discussed in [14]).
Distribution of health care. Julian
Tudor Hart, who served as a primary-
care physician for Welsh miners for
more than 30 years [15], established
a clinical research practice based on
medical surveillance of his entire
population of 1,900 patients (rather
than limiting his purview to the
fraction who attended his surgery).
From this experience, Hart coined
the “Inverse Care Law” [16]: “The
availability of good medical care varies
DOI: 10.1371/journal.pmed.0030419.g002
A makeshift clinic serving patients
affected by Hurricane Katrina
(Photo: Clinic Open, Abigail Hankin)
1664
inversely with the need for it in the
population served. . . [all the] more
completely where medical care is most
exposed to market forces . . ” Even
in a nationalized health system such
as in the United Kingdom, resource
distribution reflects the social status
of communities and determines the
health of the people in them [17].
Only 10% of the world’s health
research funding goes toward the
diseases that make up 90% of the
global burden, a situation known
as the “10/90 gap.” Traditionally,
pharmaceutical companies have
focused their research on diseases
of the rich world. Fortunately there
has been a recent surge in the
pharmaceutical industry’s engagement
in developing drugs for the neglected
diseases of poverty [18].
The Foundation for Change
in the Field
Virchow’s principles. In 1848, the
German physician Rudolf Virchow laid
the foundation for the practice of social
medicine, and advocated that medicine
be reformed on the basis of three
principles: (1) the health of the people
is a matter of direct social concern; (2)
social and economic conditions have an
important effect on health and disease,
and these relations must be subjected
to scientific investigation; and (3) the
measures taken to promote health and
to combat disease must be social, as
well as medical [19].
In the 150 years since Virchow
produced his principles, medicine has
strayed from this vision [20]. Despite
television images of trapped hurricane
survivors searching for food and the
knowledge that 44 million Americans
(most of them working) do not have
health insurance, medical research
continues its biomedical trajectory in
search of expensive “magic bullets”
and more sophisticated interventional
technologies, rather than
understanding the social determinants
of health. The field of medicine needs
to return to Virchow’s principles and
highlight the social, as well as the
biological risks, for disease. We need
to recognize that relative positions
in society affect health, exposure
to illness, risk for illness-producing
behaviors, and the patient’s sense of
agency.
Though science has become
more interdisciplinary in nature, the
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disciplines invited to the table do not
always include the social sciences. The
door is slightly ajar and must be pried
open. As Karl Popper reminds us,
“We are not students of some subject
matter, but students of problems. And
problems may cut across the borders of
any subject matter or discipline [21].”
Why then is social science often
excluded? For one, academic medicine
has been preempted by the glamour
of technology and by the rewards
it brings to those who discover and
employ it [22]. For another, social
scientists are unwelcome when they
discover unpleasant facts, such as
life circumstances trumping medical
care in determining the health status
of populations and that disparities
in health care are part of the system
rather than oversights [1]. These
discoveries not only threaten medical
hegemony, but they challenge the
larger social order [23].
The Roots of Disease Are Still
Social
We cannot look at the status of a
population’s health without examining
the social context. Consider the risk of
exposure, host susceptibility, course of
disease, and disease outcome; each is
shaped by the social matrix, whether
the disease is labeled “infectious,”
“genetic,” “metabolic,” “malignant,” or
“degenerative.”
The distribution of health and
disease in human populations reflects
where people live; when in history
they live; the air they breathe and the
water they drink; what and how much
they eat; the energy they expend; the
work they do; the status they occupy
in the social order and how they are
socialized to respond to and identify
with or resist this status; who, when,
and whether they marry; whether
they are socially isolated or rich in
friends; the amount and kind of
medical care they receive; and whether
they are stigmatized when sick or
receive care in the community. This
is no new discovery. The Hippocratic
Treatise “Airs, Waters, Places” enjoins,
“whoever wishes to pursue properly
the science of medicine” to consider,
among other features of the place of
practice, “the mode of life . . . of the
inhabitants, whether they are heavy
drinkers, taking lunch and inactive, or
athletic, industrious, eating much and
drinking little.”
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Contemporary medical indifference
to “mode of life” is a legacy of,
among other things, the spectacular
accomplishments of bacteriology in
the late-19th century, which made
single causes and single effects the
paradigm for medical theory. But the
paradigm is flawed. Bacteria do not
fully account for disease pathogenesis.
Infection by the tubercle bacillus is a
necessary, but not sufficient, condition
for clinical tuberculosis. Of individuals
with a primary infection (evidenced by
a positive tuberculin skin test), only a
minority ever display the symptoms and
signs of clinical disease. Susceptibility
to tuberculosis varies not only with
age and sex but also with housing and
social class [24]. Mortality data for
England and Wales show that the death
rate from tuberculosis had already
fallen by half during the 40 years
before Koch discovered the bacillus.
During the next 60 years, it fell by
more than half again before effective
chemotherapy (streptomycin) was
introduced [25]. Decreasing morbidity
and mortality rates reflected improved
living conditions.
We cannot confine our
alleviation of suffering
to patient biology.
Enormous health disparities exist
in this century around the world.
Life expectancy ranges from 34
years in Sierra Leone to 82 years
in Japan [26]. There is a marked
social gradient within countries:
households with more wealth, higher
incomes, better education, and safer
jobs (socioeconomic status) have
lower mortality rates. The gap in
life expectancy between the most-
advantaged and the least-advantaged
populations in the US is 20 years.
What social conditions give rise to or
contribute to increased risk for disease?
Unhealthy behaviors and life stressors
contribute to and exacerbate disease
risk, but “the health of the population is
a measure of whether, in the end, that
population is benefiting as the result of
a set of its social arrangements [26].”
From Understanding to Action
Michael Marmot, chairman of
the World Health Organization’s
Commission on Social Determinants
of Health, said that “if the major
1665
Social Medicine in the 21st Century
determinants of health are social, so
must be the remedies. Health status
is the best measure of whether a
population is thriving” [26].
Interdiscplinary research. Complex
health problems are insoluble without
understanding social context. There is
an urgent need for social scientists, and
in particular physician social scientists,
to participate in interdisciplinary
research. Training in existing
disciplines should be broadened so
that graduates become aware of the
concepts and methods at the borders
of their fields. Basic scientists should
be introduced to clinical problems;
clinical investigators should be kept
abreast of laboratory disciplines.
Training physicians in social
science. We need to create the
minimum expectation that all
physicians be trained as “informed
consumers” of social science,
able to recognize implications
applicable to their own work [27].
Beyond this, our contemporary
world needs practitioners dually
trained in medicine and the social
sciences. We need scholars who can
produce social analysis grounded in
suffering, and who are committed
to ameliorating that suffering. And
we need humanist scholars who can
unveil the experience of suffering
and health care. These physician
scholars will be those best suited to
guide medical education in the areas
of social disparities in health, cultural
competency, and beyond.
Developing a “community-side
manner.” If we want to fulfill our role
as medical professionals, we cannot
confine our alleviation of suffering to
patient biology. Our bedside manner
should be extended to an informed
“community-side manner” that
considers all the social contributing
factors to human health.
Currently, the time constraints and
scope of medical practice make it
difficult for practitioners to develop
this skill—to question their own narrow
training, to explore and understand
the social forces that affect their
patients, and to intervene beyond
bodies and into social worlds. The
version of the Hippocratic Oath most
commonly used in medical schools
today states that “I will apply, for the
benefit of the sick, all measures which
are required.” The social contract for
physicians to improve the health of
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Social Medicine in the 21st Century
those who are suffering necessitates
broader, societal interventions [28–30].
Clinicians must tackle this challenge
by incorporating social concepts into
their daily practice and becoming a
powerful voice in the public debate.
During the Katrina “unnatural
disaster,” David Brooks made a simple
yet profound observation: “Floods
wash away the surface of society, the
settled way things have been done.
They expose the underlying power
structures, the injustices, the patterns
of corruption and the unacknowledged
inequalities”[31].
Conclusion
Only systematic change can reverse
the disparities that we observe today,
to transform the heavy mantle of
inequality into action to change the
fundamental causation of disease.
We need to act on an existing social
science knowledge base and add to
that foundation through systematic
research. It is our professional
obligation to address inequities
caused by larger social forces, both
local and worldwide, which create
and perpetuate inequality and poor
health. �
Acknowledgments
The authors would like to acknowledge
the contribution and insight of several
colleagues with whom these ideas were
discussed, including Brandon Kohrt, Barry
Levy, Anne-Emanuelle Birn, Alyssa Finlay,
C. Lanny Smith, Dan O’Connell, Dabney
Evans, and Jay Kaufman. Our thanks go to
Susan Moscou and Karina Celaya for their
thoughtful reviews of the manuscript.
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28. Rosen G (1974) From medical police to social
medicine: Essays on the history of health care.
New York: Science History Publications. 327 p.
29. Scheper-Hughes N (1992) Death without
weeping: The violence of everyday life in Brazil.
Berkeley (California): University of California
Press. 628 p.
30. Holmes SM (2006) An ethnographic study
of the social context of migrant health in
the United States. PLoS Med 3: e448. DOI:
10.1371/journal.pmed.0030448
31. Brooks D (2005 September 1) The storm after
the storm. The New York Times; Section A: 23.
October 2006 | Volume 3 | Issue 10 | e419
iMedPub :: Thematic Collections :: Volume 1
Essay
How Did Social Medicine Evolve,
and Where Is It Heading?
Dorothy Porter
Introduction
The academic discipline of social
medicine has struggled to find a
precise definition for over a century.
This struggle is exemplified by the
classic social medicine course book,
The Social Medicine Reader, edited by
faculty from the Department of Social
Medicine at the University of North
Carolina, Chapel Hill, which offers
an expansive view of social medicine’s
concerns [1–4]. These concerns range
from early visions of the discipline,
focusing on topics such as the social
and economic structure of health-care
provision, health policy, and clinical
holism, through to evolving concepts
of the field, such as concerns with
doctor/patient relations in culturally
diverse societies. The evolution of
social medicine as an academic subject
has been internationally diverse and a
coherent definition of the discipline
has remained elusive.
In this essay, I briefly examine some
of the diverse developments of social
medicine as an academic discipline and
its links to political conceptualizations
of the role of medicine in society.
I then analyze the possible future
directions open to the discipline in
the Anglo-American context. A better
understanding of the evolution of
social medicine could help to focus its
role in responding to the health needs
of a post-industrial, globalizing world.
The Essay section contains opinion pieces on topics
of broad interest to a general medical audience.
PLoS Medicine | www.plosmedicine.org
iMedPub :: Thematic collections :: Volume 1
Social Medicine in the 21st Century
The Interwar Years of the
Twentieth Century: Programs
of Social Reform
In 1945 René Sand was appointed as
Professor of Social Medicine at Brussels
University, one of the first professors
appointed in this discipline. His
post had been created by a financial
endowment from the Rockefeller
Fund. Sand believed that the roots of DOI: 10.1371/journal.pmed.0030399.g001
social medicine lay in ancient Greek
A march in support of Salvador Allende,
philosophies of medicine and health
who influenced the development of Latin
[5]. American social medicine
Sand’s younger contemporary,
(Photo: US Library of Congress)
George Rosen, a historian and
Professor of Public Health at Yale,
Institute of Human Relations was
traced the origin of the modern
created in 1931 under the direction
concept of the social role of medicine
of Milton Winternitz, the dean of
to the nineteenth century. Rosen
the Medical School. The aim of the
emphasized the role of French and
institute was to integrate medicine into
German health and social reformers, research on social inequalities, which
including Jules Guerin, Alfred
would inform the training of physicians
Grotjahn, and, above all, Rudolph
to become, in Winternitz’s words,
Virchow, the liberal politician and “clinical sociologists” [10,11].
founder of cellular pathology [6,7].
In the 20s and 30s Sand played
Nineteenth-century health and
a critical role in the international
social reformers had been concerned
promotion of the new academic
with developing the political role discipline of social medicine, especially
of medicine in creating egalitarian in Latin America, where his work for
societies [8]. This concern continued
the Rockefeller International Health
to be a primary goal of twentieth-
century medical academics, such
as Sand, who wanted to integrate
Funding: The author received no specific funding for
medicine’s social role into the this article.
training of physicians through the
creation of a new academic discipline
Competing Interests: The author has declared that
no competing interests exist.
of social medicine [9]. Virchow had
articulated the need to develop a Citation: Porter D (2006) How did social medicine
evolve, and where is it heading? PLoS Med 3(10):
sociological method of inquiry into the e399. DOI: 10.1371/journal.pmed.0030399
conditions that maximized health and
prevented disease [8]. Inspired by the DOI: 10.1371/journal.pmed.0030399
experiments in sociological medicine Copyright: © 2006 Dorothy Porter. This is an
and social hygiene in revolutionary open-access article distributed under the terms
Soviet society in the 1920s, interwar
of the Creative Commons Attribution License,
which permits unrestricted use, distribution, and
sociomedical reformers on both reproduction in any medium, provided the original
sides of the Atlantic believed that the author and source are credited.
creation of a sociopolitical role for Abbreviations: LASM; Latin American social
medicine could be achieved by turning medicine
it into a social science [9]. Dorothy Porter is Professor in the History of
The interwar years witnessed a wide Health Sciences and Chair of the Department
variety of international developments of Anthropology, History and Social Medicine,
University of California San Francisco, San Francisco,
in social medicine as an academic California, United States of America. E-mail: porterd@
discipline. At Yale University, the dahsm.ucsf.edu
1667 October 2006 | Volume 3 | Issue 10 | e399
11
Social Medicine in the 21st Century
Board supported the creation of social
medicine institutes and departments at
the University of San Marcos in Lima,
Peru and the Oswaldo Cruz Institute of
Rio de Janeiro in Brazil [12,13]. At the
University of Chile, Max Westenhofer,
a former Virchow student, taught
social medicine as well as pathology
to the future president of Chile,
Salvador Allende. Allende developed
a Marxist conceptualization which
profoundly influenced the subsequent
development of Latin American social
medicine (LASM) and which was
reflected in the creation of a national
health service under his presidency in
the 1970s [14].
Within international health
organizations in the interwar years,
supporters of social medicine as
an academic discipline tried to
undermine any exclusive focus on
clinical medicine and pushed towards
much broader social agendas. From
the time of its establishment, the
governing committee of the League
of Nations Health Organization
prioritized the development of social
medicine. The International Labor
Organization’s representatives on the
committee persistently argued that
issues of social medicine could not be
separated from the question of access
to services that fundamentally affected
the health of workers [15]. Before the
Second World War, the International
Health Committee of the Rockefeller
Foundation also identified social
insurance as a central issue of policy
promotion.
As Paul Weindling has pointed
out, the concern with developing
multifactorial analyses of health and
disease in the interwar period was
stimulated by the economic crises
of the 1930s and the effects of social
deprivation [16]. Consequently many
significant individuals in international
health organizations, such as John A.
Kingsbury and Edgar Sydenstricker
from the Milbank Memorial Fund, saw
social medicine as a question of health
citizenship. This was also the case in
national contexts. Within Britain, for
example, the debates surrounding
social medicine in the interwar
years intersected with the debates
surrounding the planning of a national
health service and the establishment
of free access to services at the point of
delivery as a fundamental social right of
democratic citizenship [16].
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12
DOI: 10.1371/journal.pmed.0030399.g002
Che Guevara’s “revolutionary medicine”
stressed the social origins of illness and
the need for social change to improve
health conditions
(Photo: Marko Faas)
The goals of social medicine as an
academic discipline as it developed
in the interwar years, therefore, were
overtly linked to political programs
of social reform. The international
social medicine movement before the
Second World War aimed to create a
new social role for medicine in order
to grapple with the epidemiological
transition created by economic and
social developments in the twentieth
century. The interdisciplinary program
between medicine and social science
would provide medicine with the
intellectual skills needed to analyze the
social causes of health and illness in
the same way as the alliance between
medicine and the laboratory sciences
had provided new insights into the
chemical and physical bases of disease.
But these developments took place
within, and were inherently bound to,
the international debate concerning
the establishment of socialized
medicine and the eradication of health
and socioeconomic inequalities.
From Social Structure to Social
Behavior: The Rise of Lifestyle
Medicine
The institutionalization of social
medicine after the Second World War
varied widely among different national
contexts. Two contrasting examples
are LASM and social medicine in the
Anglo-American environments.
The Latin American context: A
focus on the social and structural
determinants of health. Following the
Second World War, LASM became
increasingly differentiated from public
health as an academic discipline by
virtue of its aim to embed Marxist and
1668
post-Marxist social and political theory
into research and teaching. Latin
American social medicine focused on
political and social transformation,
whereas public health continued to
prioritize the practical implementation
of public policy as a central empirical
and intellectual goal.
An example of the way in which
LASM focused on social transformation
is Ernesto (“Che”) Guevara’s
conceptualization of “revolutionary
medicine,” which hinged on the
training of all health-care professionals,
including physicians, in the social
origins of illness and the need for
social change to improve health
conditions. Che Guevara’s reflections
played a profound role in the Cuban,
Chilean, and Nicaraguan revolutionary
governments’ reform of medical and
health-care systems and education [14].
These developments were further
extended by an emergent leader of
LASM in the 1970s, Juan César García,
who had trained as a physician in
Argentina and as a sociologist in Chile.
García was a research coordinator
within the Pan American Health
Organization from 1966. In the late
70s and early 80s he organized a series
of social medicine seminars, raised
and distributed grants, contracts, and
fellowships throughout the region, and
published numerous volumes on social
medicine [17]. In 1984, the year he
died, leading social medical reformers
from within his seminar group created
the Latin American Social Medicine
Association (ALAMES) which became
an academic and political presence in
all countries throughout the continent.
ALAMES promoted a cohesive
conceptual foundation for social
medicine in medical education in
each of these hugely varying national
contexts grounded in contemporary
socialist theories of health and society
[18,19]. Thus, social medicine in
Latin America continued to directly
engage with major theoretical and
methodological debates within the
social sciences and within Marxism
that explored the social structural
determinants of disease such as
economic inequality.
The Anglo-American context: The
rise of “lifestyle medicine.” In contrast
to LASM, social medicine in the Anglo-
American context developed a model
of prevention that primarily focused
on changing individual behavior rather
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than addressing the social structural
determinants of health and disease.
Unlike LASM, Anglo-American
social medicine struggled to become
institutionalized as an academic
discipline which influenced medical
education.
In the United States, social
medicine was a casualty of the ever
widening gap between preventive and
therapeutic medicine. Alan Brandt
and Martha Gardner have pointed
out the reasons for the widening
and often increasingly hostile divide
between medicine and public health
in the US from the beginning of the
twentieth century. These reasons
included contrasting theoretical
perspectives on disease control and
management, conflicting goals of
professionalization, and the rise of
medical authority with the expansion
of hospital-based specialist practices.
[20].
Brandt and Gardner argue that
following the Second World War a
new accommodation was achieved,
however, within US public health
as an academic discipline and as a
professional practice, as public health
adopted a more biomedical rather
than sociomedical model of disease
within a preventive philosophy driven
by the management of individual
risk factors for chronic illnesses
[20]. Their argument is powerfully
illustrated in the analytical frameworks
that drove preventive strategies for
cardiovascular disease, lung cancer,
and obesity. These frameworks were
supported by the development of what
Gerald Oppenheimer has argued was
largely a behaviorist model of clinical
epidemiology in the early post-war
decades [21,22].
From the 1920s, statisticians working
in the US life insurance industry had
begun to examine the relationships
between lifestyle, overweight, and
cardiovascular morbidity and mortality
[23–27]. At the end of the war the
US Public Health Service initiated
new studies of the impact of the
epidemiological transition to chronic
diseases when Joseph Mountain hired
Gilcin Meadors in 1946 to found what
eventually became the Framingham
study of heart disease in 1947 [21].
Meadors set up the initial study with
the expressed purpose of producing
“recommendations for the modification
of personal habits and environment”
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iMedPub :: Thematic collections :: Volume 1
that could prevent the development of
coronary heart disease [21].
While the Framingham study
highlighted the role of diet and
cholesterol, by the early 1950s in
Britain Jerry Morris and his colleagues
at the Medical Research Council Social
Medicine Unit were highlighting
another lifestyle determinant of
coronary heart disease: exercise
[28]. In the meantime, in 1948 Iwao
Milton Moriyama and Theodore
Woolsey produced a large analysis
of cardiovascular disease in relation
to age changes in the population
using population survey data that also
included discussions of lifestyle issues
such as obesity [29].
In October 1952, the National
Vitamin Foundation funded a
symposium at Harvard University on
overeating, overweight, and obesity
which included papers on lipogenesis,
the psychology of overeating, the
physiology of overweight, and a paper
by P.C. Fry on “Obesity: Red Light of
Health” [30]. The public and individual
health implications of overweight and
obesity attracted increasing attention
throughout the 1950s. Numerous public
health authors took up the issue of
overweight with such titles as Your Weight
and Your Life and The Low-Fat Way to
Health and Longer Life: The Complete Guide
to Better Health through Automatic Weight
Control, Modern Nutritional Supplements,
and Low-Fat Diet [31,32]. Psychology
research students undertook studies
such as “Dimensions of Personality as
Related to Obesity in Women” [33].
In Britain, such behavioral analysis
also began to replace traditional
DOI: 10.1371/journal.pmed.0030399.g003
Doll and Hill’s research led to an anti-
smoking campaign in Britain that
exemplified a behavioral model of
chronic disease prevention
(Photo: Adrian Pingstone)
1669
Social Medicine in the 21st Century
structural (political/economic)
explanations of core public health
concerns such as infant mortality.
Since the nineteenth century, studies
of infant mortality had prioritized
economic inequality as the major
cause of steep differential gradients
according to class. However, new
sociobehavioral investigations began to
explore other factors in the early 1950s.
Because at that time it was extremely
difficult to determine the intrauterine
events that may have led to the death of
babies within the first four weeks of life,
often the cause of death on certificates
was simply listed as “prematurity.”
Stewart, Webb, and Hewitt from the
Oxford Institute of Social Medicine
suggested that this term really
described a way of dying rather than an
actual cause. In 1955 they attempted to
correlate 1,078 stillbirths and neonatal
deaths with a variety of factors,
including the mother’s physique
during the antenatal period [34].
The result of investigating what would
appear to be the biological conditions
pertaining to death resulted, however,
in identifying social behavior as a major
factor. In their 1955 study Stuart, Webb
and Hewitt discovered that :
“Medium” and “thin” women did
not differ in their ability to produce
live infants, but among the 212
women described as “obese” the risk
of still birth or neonatal death was
60 per cent above the standard. This
risk appeared to be still greater among
the women who were described as both
“obese” and “short” [34].
The established structural
explanation of the relationship
between poverty and infant mortality
was thus challenged by a new
behavioral argument about mothers’
obesity as the major determinant of
stillbirths and neonatal deaths. This
new argument claimed that lifestyles,
involving unhealthy behaviors such as
excessive food consumption and lack
of exercise, created major risks rather
than life conditions such as economic
inequality.
One of the most dramatic early
correlations of behavioral lifestyle
habits and chronic illness in Britain
was established by Richard Doll and
Austin Bradford Hill in their analysis
of cigarette consumption and rising
levels of lung cancer published in the
BMJ in 1950 [35,36]. Both Doll and
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Social Medicine in the 21st Century
DOI: 10.1371/journal.pmed.0030399.g004
Kelly Brownell has suggested that the marketing and advertising techniques of the
corporate food industry play a role in the rise in obesity
Hill were founding members of the
British Social Medicine Association
when it was set up in 1957 and were
closely involved with the social
medicine intellectual community.
Although smoking was considered a
habit, rather than a dependency in
the strict psychological definition of
addiction, it was represented as an
individual responsibility [37,38]. The
anti-smoking campaign in Britain
which followed the Doll and Hill results
exemplified the new message of a
behavioral model of chronic disease
prevention. The key to the social
management of chronic illnesses—such
as lung cancer—was through changing
individual behavior, raising health
consciousness, and promoting self–
health care.
Following the anti-smoking
campaign, the strategy of preventing
chronic disease through education
of individual behavior gathered
momentum in the Anglo-American
context. Subsequent post-war
campaigns offered behavioral,
lifestyle methods for preventing heart
disease, various forms of cancer, liver
disease, digestive disorders, venereal
disease, and obesity. The behavioral
model of lifestyle prevention became
indistinguishable from social medicine
as an academic discipline throughout
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14
this period as it was increasingly
grounded in a methodologically
individualist epidemiology as the
dominant science of etiology of chronic
disease.
The analysis of the relationship
between smoking and lung cancer gave
epidemiology a new legitimacy as the
scientific key to revealing a bio-psycho-
socio-medical model of chronic illness.
The latter became a critical explanatory
model underwriting a new approach
to disease prevention through the
control of individual lifestyles. The
methodologically individualist basis
of social medicine, with its focus on
prevention of disease through lifestyle
and behavior changes, mirrored the
individualist focus of therapeutic
medicine. Together, preventive and
therapeutic medicine expanded a
behavioral and individualist model
of the relationship between health
and disease in the latter half of the
twentieth century [39].
A New Direction for Anglo-
American Social Medicine:
A Return to a Focus on Social
Origins of Disease?
Social medicine in the Anglo-American
context remained closely bound to
the bio-psycho-socio-model of chronic
disease that underpinned lifestyle-
1670
based, behavioral models of prevention
after the Second World War. However,
recent political developments in
chronic disease prevention, specifically
with respect to tackling obesity, may
encourage yet another paradigmatic
shift. This shift may re-link Anglo-
American social medicine with its
roots in social structural analysis of
disease etiology and with the continued
socioeconomic structural analytical
focus of LASM.
As discussed above, since the
Second World War obesity figured
prominently in the development of
a behavioral etiological framework
for analyzing chronic diseases and
in a behavioral conceptualization
of prevention through individual
lifestyle changes. Since the 1990s,
however, this conceptual framework
has been challenged by politically
and intellectually radical health
reformers who have focused on
the role of corporate capitalism in
the production of diseases. Radical
health discourses since the 1990s
have focused on deconstructing the
neo-liberal model of prevention
as an individual responsibility. For
a much longer period, the role of
corporate industrial organizations
in the production of chronic disease
has been highlighted by historians of
occupational diseases [40,41] and by
historians of smoking together with
reformers’ and government agencies’
battles with the tobacco industry from
the 1980s [42,43]. More recently, a
radical health reform war on “Big
Food” has mimicked many of the
strategic arguments and actions of the
earlier wars on “Big Tobacco” and “Big
Pharma.”
In their war against “Big Food,”
radical health reformers have rejected
the behavioral etiological explanation
of obesity and have focused instead
on an environmental explanation.
Ironically, one of the foremost
supporters of this idea has been a
distinguished behavioral scientist, Kelly
Brownell, who has suggested that the
cause of obesity and overweight is a
toxic environment of addictive food
production, which includes the mass
marketing and advertising techniques
of the corporate food industry [44].
Brownell and his co-founders of a
health reform group, Center for
Science in the Public Interest, have
argued for government intervention
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to control and prevent obesity through
taxation of high-calorie foods of low
nutritional value, the banning of
junk food sales from schools, and
compulsory public disclosure of
calorific and chemical components
of nutritional products, including on
restaurant menus [45, 46].
The environmental analytical
framework offered by the reform
“food warriors” has been endorsed
by the most recent investigations of
the World Health Organization in
their 2003 Draft Global Strategy on Diet,
Physical Activity and Health [47]. The
draft strategy recommends that the
governments of the most affluent
societies introduce nutritional taxation
to supplement the production and
sales of nutritious foods, impose legal
controls on the sale of non-nutritious
high-calorie products to children, and
regulate the marketing and advertising
activities of the food industry to protect
vulnerable populations. A special
emphasis is made in the draft strategy
on the need to prevent the corporate
food industry from attempting to get
children addicted to certain foods as a
marketing mechanism (a mechanism
that was used by the tobacco industry to
addict children to cigarettes).
A New Framework of Disease
Etiology for Social Medicine
Social medicine researchers and
academic educators face the task of
integrating the historical wisdom
acquired during the evolution of the
discipline into a new framework. This
framework is needed for understanding
the complex interaction of biology
with the political, economic, social,
and cultural relations of the twenty-first
century.
The most recently expanded
environmental and social structural
etiological models of chronic illness
revealed in the course of the “obesity
wars” offer a possible route to a new
shift for social medicine. These recent
models reconnect the discipline with
the socioeconomic structural analytical
frameworks on which it was originally
founded and also further redefine
them in the context of the corporate
structure of economic production in
the twenty-first century. At the same
time, such an intellectual shift would
integrate the future evolution of social
medicine in the Anglo-American with
the LASM holistic socioeconomic
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iMedPub :: Thematic collections :: Volume 1
structural model of disease etiology.
A greater integrated international
social medicine discourse may be the
best fit to confront the challenges of
understanding a new global order of
health, disease, medicine, and the
disparities of care and resources. �
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33. Levy BK (1955) Dimensions of personality as
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34. Stewart AM, Webb JW, Hewitt D (1955)
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35. Doll R, Hill AB (1950) Smoking and carcinoma
of the lung. Br Med J 2:739–748.
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Reynolds L, Tansey EM, editors. Ashes to ashes:
The history of smoking and health. Amsterdam
and Atlanta: Rodopi. pp. 143–163.
38. Berridge V (1979) Morality and medical
science: Concepts of narcotic addiction in
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39. Porter D (2006) The social contract of
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Zylberman P, Murard L, editors. On shifting
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40. Markowitz GE, Rosner D (2002) Deceit and
denial: The deadly politics of industrial
pollution. Berkeley and Los Angeles: University
of California Press. 464 p.
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iMedPub :: Thematic Collections :: Volume 1
Essay
Anthropology in the Clinic: The Problem
of Cultural Competency and How to Fix It
Arthur Kleinman*, Peter Benson
C
ultural competency has become
a fashionable term for clinicians
and researchers. Yet no one can
define this term precisely enough to
operationalize it in clinical training and
best practices.
It is clear that culture does matter in
the clinic. Cultural factors are crucial
to diagnosis, treatment, and care.
They shape health-related beliefs,
behaviors, and values [1,2]. But the
large claims about the value of cultural
competence for the art of professional
care-giving around the world are simply
not supported by robust evaluation
research showing that systematic
attention to culture really improves
clinical services. This lack of evidence
is a failure of outcome research to take
culture seriously enough to routinely
assess the cost-effectiveness of culturally
informed therapeutic practices, not a
lack of effort to introduce culturally
informed strategies into clinical settings
[3].
Problems with the Idea of Cultural
Competency
One major problem with the idea of
cultural competency is that it suggests
culture can be reduced to a technical
skill for which clinicians can be trained
to develop expertise [4]. This problem
stems from how culture is defined in
medicine, which contrasts strikingly
with its current use in anthropology—
the field in which the concept of
culture originated [5–9]. Culture is
often made synonymous with ethnicity,
nationality, and language. For example,
The Essay section contains opinion pieces on topics
of broad interest to a general medical audience.
PLoS Medicine | www.plosmedicine.org
iMedPub :: Thematic collections :: Volume 1
patients of a certain ethnicity—such as,
the “Mexican patient”—are assumed
to have a core set of beliefs about
illness owing to fixed ethnic traits.
Cultural competency becomes a series
of “do’s and don’ts” that define how
to treat a patient of a given ethnic
background [10]. The idea of isolated
societies with shared cultural meanings
would be rejected by anthropologists,
today, since it leads to dangerous
stereotyping—such as, “Chinese believe
this,” “Japanese believe that,” and so
on—as if entire societies or ethnic
groups could be described by these
simple slogans [11–13].
Another problem is that cultural
factors are not always central to a case,
and might actually hinder a more
Box 1. Case Scenario: Cultural
Assumptions May Hinder
Practical Understanding
A medical anthropologist is asked by
a pediatrician in California to consult in
the care of a Mexican man who is HIV
positive. The man’s wife had died of AIDS
one year ago. He has a four-year-old son
who is HIV positive, but he has not been
bringing the child in regularly for care.
The explanation given by the clinicians
assumed that the problem turned on a
radically different cultural understanding.
What the anthropologist found, though,
was to the contrary. This man had a near
complete understanding of HIV/AIDS
and its treatment—largely through the
support of a local nonprofit organization
aimed at supporting Mexican-American
patients with HIV. However, he was a
very-low-paid bus driver, often working
late-night shifts, and he had no time
to take his son to the clinic to receive
care for him as regularly as his doctors
requested. His failure to attend was not
because of cultural differences, but rather
his practical, socioeconomic situation.
Talking with him and taking into account
his “local world” were more useful than
positing radically different Mexican
health beliefs.
1673
Social Medicine in the 21st Century
practical understanding of an episode
(see Box 1).
Historically in the health-care
domain, culture referred almost solely
to the domain of the patient and
family. As seen in the case scenario
in Box 1, we can also talk about the
culture of the professional caregiver—
including both the cultural background
of the doctor, nurse, or social worker,
and the culture of biomedicine
itself—especially as it is expressed in
institutions such as hospitals, clinics,
and medical schools [14]. Indeed, the
culture of biomedicine is now seen
as key to the transmission of stigma,
the incorporation and maintenance
of racial bias in institutions, and the
development of health disparities
across minority groups [15–18].
Culture Is Not Static
In anthropology today, culture is
not seen as homogenous or static.
Anthropologists emphasize that culture
Funding: Our work on cultural aspects of clinical care
has been supported by the Michael Crichton Fund,
Harvard Medical School, and by a National Institute of
Mental Health Training Grant on “Culture and Mental
Health Services” (5T32MH018006-21).
Competing Interests: The authors declare that they
have no competing interests.
Citation: Kleinman A, Benson P (2006) Anthropology
in the clinic: The problem of cultural competency and
how to fix it. PLoS Med 3(10): e294. DOI: 10.1371/
journal.pmed.0030294
DOI: 10.1371/journal.pmed.0030294
Copyright: © 2006 Kleinman and Benson. This is
an open-access article distributed under the terms
of the Creative Commons Attribution License,
which permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Arthur Kleinman is Chair and Esther and Sidney
Rabb Professor in the Department of Anthropology
at Harvard University, and Professor of Psychiatry
and Medical Anthropology at Harvard Medical
School, Boston, Massachusetts, United States of
America. Peter Benson is a PhD candidate in medical
anthropology in the Department of Anthropology
at Harvard University, Cambridge, Massachusetts,
United States of America.
* To whom correspondence should be addressed.
E-mail: kleinman@wjh.harvard.edu
October 2006 | Volume 3 | Issue 10 | e294
17
Social Medicine in the 21st Century
is not a single variable but rather
comprises multiple variables, affecting
all aspects of experience. Culture is
inseparable from economic, political,
religious, psychological, and biological
conditions. Culture is a process
through which ordinary activities and
conditions take on an emotional tone
and a moral meaning for participants.
Cultural processes include
the embodiment of meaning in
psychophysiological reactions [19],
the development of interpersonal
attachments [20], the serious
performance of religious practices
[21], common-sense interpretations
[22], and the cultivation of collective
and individual identity [23]. Cultural
processes frequently differ within the
same ethnic or social group because
of differences in age cohort, gender,
political association, class, religion,
ethnicity, and even personality.
The Importance of Ethnography
It is of course legitimate and highly
desirable for clinicians to be sensitive
to cultural difference, and to attempt
to provide care that deals with cultural
issues from an anthropological
perspective. We believe that the optimal
way to do this is to train clinicians in
ethnography. “Ethnography” is the
technical term used in anthropology
for its core methodology. It refers to
an anthropologist’s description of
what life is like in a “local world,” a
specific setting in a society—usually
one different from that of the
anthropologist’s world. Traditionally,
the ethnographer visits a foreign
country, learns the language, and,
systematically, describes social patterns
in a particular village, neighborhood,
or network [24]. What sets this
apart from other methods of social
research is the importance placed on
understanding the native’s point of
view [25]. The ethnographer practices
an intensive and imaginative empathy
for the experience of the natives—
appreciating and humanly engaging
with their foreignness [26], and
understanding their religion, moral
values, and everyday practices [27,28].
Ethnography is different than
cultural competency. It eschews the
“trait list approach” that understands
culture as a set of already-known
factors, such as “Chinese eat pork,
Jews don’t.” (Millions of Chinese are
vegetarians or are Muslims who do
18 PLoS Medicine | www.plosmedicine.org
Box 2. The Explanatory Models
Approach
• What do you call this problem?
• What do you believe is the cause of
this problem?
• What course do you expect it to take?
How serious is it?
• What do you think this problem does
inside your body?
• How does it affect your body and your
mind?
• What do you most fear about this
condition?
• What do you most fear about the
treatment?
(Source: Chapter 15 in [38])
not eat pork; some Jews, including the
corresponding author of this paper,
love pork.) Ethnography emphasizes
engagement with others and with the
practices that people undertake in their
local worlds. It also emphasizes the
ambivalence that many people feel as
a result of being between worlds (for
example, persons who identify as both
African-American and Irish, Jewish and
Christian, American and French) in a
way that cultural competency does not.
And ethnography eschews the technical
mastery that the term “competency”
suggests. Anthropologists and clinicians
share a common belief—i.e., the
primacy of experience [29–33]. The
clinician, as an anthropologist of
sorts, can empathize with the lived
experience of the patient’s illness, and
try to understand the illness as the
patient understands, feels, perceives,
and responds to it.
The Explanatory Models Approach
One of us [AK] introduced the
“explanatory models approach,”
which is widely used in American
medical schools today, as an interview
technique (described below) that
tries to understand how the social
world affects and is affected by illness.
Despite its influence, we’ve often
witnessed misadventure when clinicians
and clinical students use explanatory
models. They materialize the models
as a kind of substance or measurement
(like hemoglobin, blood pressure, or X
rays), and use it to end a conversation
rather to start a conversation. The
moment when the human experience
1674
of illness is recast into technical disease
categories something crucial to the
experience is lost because it was not
validated as an appropriate clinical
concern [34].
Rather, explanatory models
ought to open clinicians to human
communication and set their expert
knowledge alongside (not over and
above) the patient’s own explanation
and viewpoint. Using this approach,
clinicians can perform a “mini-
ethnography,” organized into a series
of six steps. This is a revision of the
Cultural Formulation included in the
fourth edition of the Diagnostic and
Statistical Manual of Mental Disorders
(DSM-IV) (see Appendix I in [35])
[36,37].
A Revised Cultural Formulation
Step 1: Ethnic identity. The first step
is to ask about ethnic identity and
determine whether it matters for the
patient—whether it is an important
part of the patient’s sense of self. As
part of this inquiry, it is crucial to
acknowledge and affirm a person’s
experience of ethnicity and illness. This
is basic to any therapeutic interaction,
and enables a respectful inquiry into
the person’s identity. The clinician
can communicate a recognition that
people live their ethnicity differently,
that the experience of ethnicity is
complicated but important, and that
it bears significance in the health-care
setting. Treating ethnicity as a matter
of empirical evidence means that its
salience depends on the situation.
Ethnicity is not an abstract identity,
as the DSM-IV cultural formulation
implies, but a vital aspect of how life is
lived. Its importance varies from case
to case and depends on the person. It
defines how people see themselves and
their place within family, work, and
social networks. Rather than assuming
knowledge of the patient, which can
lead to stereotyping, simply asking the
patient about ethnicity and its salience
is the best way to start.
Step 2: What is at stake? The second
step is to evaluate what is at stake as
patients and their loved ones face an
episode of illness. This evaluation may
include close relationships, material
resources, religious commitments, and
even life itself. The question, “What is
at stake?” can be asked by clinicians;
the responses to this question will vary
within and between ethnic groups, and
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will shed light on the moral lives of
patients and their families.
Step 3: The illness narrative. Step
3 is to reconstruct the patient’s
“illness narrative” [38]. This involves
a series of questions (about one’s
explanatory model) aimed at acquiring
an understanding of the meaning of
illness (Box 2).
The patient and family’s explanatory
models can then be used to open up
a conversation on cultural meanings
that may hold serious implications for
care. In this conversation, the clinician
should be open to cultural differences
in local worlds, and the patient should
recognize that doctors do not fit a
certain stereotype any more than they
themselves do.
Step 4: Psychosocial stresses. Step
4 is to consider the ongoing stresses
and social supports that characterize
people’s lives. The clinician records the
chief psychosocial problems associated
with the illness and its treatment (such
as family tensions, work problems,
financial difficulties, and personal
anxiety). For example, if the clinicians
described in the case scenario in Box 1
had carried out step 4, they could have
avoided the misunderstanding with
their Mexican-American patient. The
clinician can also list interventions to
improve any of the patient’s difficulties,
such as professional therapy, self-
treatment, family assistance, and
alternative or complementary medicine.
Step 5: Influence of culture on
clinical relationships. Step 5 is to
examine culture in terms of its
influence on clinical relationships.
Clinicians are grounded in the world
of the patient, in their own personal
network, and in the professional
world of biomedicine and institutions.
One crucial tool in ethnography is
the critical self-reflection that comes
from the unsettling but enlightening
experience of being between social
worlds (for example, the world of the
researcher/doctor and the world of the
patient/participant of ethnographic
research). So, too, it is important to
train clinicians to unpack the formative
effect that the culture of biomedicine
and institutions has on the most
routine clinical practices—including
bias, inappropriate and excessive use
of advanced technology interventions,
and, of course, stereotyping. Teaching
practitioners to consider the effects
of the culture of biomedicine is
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contrary to the view of the expert as
authority and to the media’s view that
technical expertise is always the best
answer. The statement “First do no
harm by stereotyping” should appear
on the walls of all clinics that cater
to immigrant, refugee, and ethnic-
minority populations. And yet since
culture does not only apply to these
groups, it ought to appear on the walls
of all clinics.
Step 6: The problems of a cultural
competency approach. Finally, step 6
is to take into account the question
of efficacy—namely, “Does this
intervention actually work in particular
cases?” There are also potential
side-effects. Every intervention has
potential unwanted effects, and this
is also true of a culturalist approach.
Perhaps the most serious side-effect of
cultural competency is that attention to
cultural difference can be interpreted
by patients and families as intrusive,
and might even contribute to a sense
of being singled out and stigmatized
[3,11,12]. Another danger is that
overemphasis on cultural difference
can lead to the mistaken idea that if
we can only identify the cultural root
of the problem, it can be resolved.
The situation is usually much more
complicated. For example, in her
influential book, The Spirit Catches You
and You Fall Down, Ann Fadiman shows
that while inattention to culturally
important factors creates havoc in
the care of a young Hmong patient
with epilepsy, once the cultural issues
are addressed, there is still no easy
resolution [33]. Instead, a whole new
series of questions is raised.
Determining What Is at Stake for
the Patient
The case history in Box 3 gives
an example of how simply using
culturally appropriate terms to explain
people’s life stories helps the health
professionals to restore a “broken”
relationship and allows treatment to
continue. This case is not settled, nor is
it an example of any kind of technical
competency. But there are two
illuminating aspects of this case. First, it
is important that health-care providers
do not stigmatize or stereotype
patients. This is a case study of an
individual. Not all Chinese people fit
this life story, and many contemporary
Chinese now accept the diagnosis of
depression. Second, culture is not
1675
Social Medicine in the 21st Century
Box 3. Case Scenario: The
Importance of Using Culturally
Appropriate Terms to Explain
People’s Life Stories
Miss Lin is a 24-year-old exchange
student from China in graduate school in
the United States, where she developed
symptoms of palpitations, shortness
of breath, dizziness, fatigue, and
headaches. A thorough medical work-
up leaves the symptoms unexplained. A
psychiatric consultant diagnoses a mixed
depressive-anxiety disorder. Miss Lin
is placed on antidepressants and does
cognitive-behavioral psychotherapy,
with symptoms getting better over a six-
week period; but they do not disappear
completely.
Subsequently, the patient drops out
of treatment and refuses further contact
with the medical system. Anthropological
consultation discovers that Miss Lin
comes from a Chinese family in Beijing—
one of her cousins is hospitalized with
chronic mental illness. So powerful is
the stigma of that illness for this family
that Miss Lin cannot conceive of the
idea that she is suffering from a mental
disorder, and refuses to deal with her
American health-care providers because
they use the terms “anxiety disorder” and
“depressive disorder.” In this instance,
she herself points out that in China
the term that is used is neurasthenia
or a stress-related condition. On the
anthropologist’s urging, clinicians
reconnect with Miss Lin under this label.
just what patients have; clinicians
also participate in cultural worlds. A
physician too rigidly oriented around
the classification system of biomedicine
might find it unacceptable to use lay
classifications for the treatment.
For the late French moral
philosopher Emmanuel Levinas, in
the face of a person’s suffering, the
first ethical task is acknowledgement
[39]. Face-to-face moral issues
precede and take precedence over
epistemological and cultural ones
[40]. There is something more
basic and more crucial than cultural
competency in understanding the life
of the patient, and this is the moral
meaning of suffering—what is at stake
for the patient; what the patient, at a
deep level, stands to gain or lose. The
explanatory models approach does not
ask, for example, “What do Mexicans
October 2006 | Volume 3 | Issue 10 | e294 19
Social Medicine in the 21st Century
call this problem?” It asks, “What do
you call this problem?” and thus a
direct and immediate appeal is made
to the patient as an individual, not as a
representative of a group.
Conclusion
What clinicians want to understand
through the mini-ethnography is what
really matters—what is really at stake
for patients, their families, and, at
times, their communities, and also what
is at stake for themselves. If we were
to reduce the six steps of culturally
informed care to one activity that even
the busiest clinician should be able to
find time to do, it would be to routinely
ask patients (and where appropriate
family members) what matters most to
them in the experience of illness and
treatment. The clinicians can then use
that crucial information in thinking
through treatment decisions and
negotiating with patients.
This is much different than cultural
competency. Finding out what matters
most to another person is not a
technical skill. It is an elective affinity to
the patient. This orientation becomes
part of the practitioner’s sense of self,
and interpersonal skills become an
important part of the practitioner’s
clinical resources [41]. It is what Franz
Kafka said “a born doctor” has: “a
hunger for people” [42]. And its main
thrust is to focus on the patient as an
individual, not a stereotype; as a human
being facing danger and uncertainty,
not merely a case; as an opportunity
for the doctor to engage in an essential
moral task, not an issue in cost-
accounting [43]. �
Acknowledgments
The two case scenarios included in this
article are fictional, but they are inspired by
the real clinical experience of the authors.
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39. Levinas E (2000) Useless suffering. In: Smith
MB, Harshav B, translators. Entre nous:
Thinking-of-the-other. New York: Columbia
University Press. pp. 91–101.
40. Levinas E, (1998) Otherwise than being:
Or beyond essence. Pittsburgh: Duquesne
University Press. 205 p.
41. Goethe (1978) Elective affinities. New York:
Penguin. 304 p.
42. Lensing LA (2003 February 28) Franz would be
with us here. Times Literary Supplement. pp.
13–15.
43. Kleinman A (2006) What really matters: Living
a moral life amidst uncertainty and danger.
Oxford: Oxford University Press. 272 p.
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iMedPub :: Thematic Collections :: Volume 1
Essay
“Anecdotal Evidence”:
Why Narratives Matter to Medical Practice
Rafael Campo
I want to tell you a story.
After a lecture I gave recently
at a well-known medical school on
the possible utility of narrative to
clinical practice, from the back of the
auditorium came the first question of
the traditional question and answer
portion of the program: “Don’t you
feel, Dr. Campo, that what you seem
to regard as the arrogant biomedical
science model of medicine is already
sufficiently under attack these days?”
As the lights came up, I could make
out a tall, bearded man in a long white
coat, standing as if at attention near
the end of one of the aisles. “We have
creationists trying to teach ‘intelligent
design’ in our children’s science
classes, and even closer to home, nurses
and optometrists being given the
right to prescribe medications.” Their
applause having ceased, my audience
now grew hushed as he went on, his
voice steadily rising.
“Do you really expect physicians
to accept the notion that what any
ignorant patient tells us about his
disease should carry a weight equal
to what our years of training and
expertise reveals to us about complex
pathophysiology?” Then came what was
clearly meant to be his coup de grace,
delivered in an almost derisive tone.
“Really, sir, do you have anything more
than the anecdotal evidence you shared
to support your thesis?”
Our Skepticism about Anecdotes
Of course, like any physician trained
in the past several decades, I too had
The Essay section contains opinion pieces on topics
of broad interest to a general medical audience.
PLoS Medicine | www.plosmedicine.org
iMedPub :: Thematic collections :: Volume 1
learned to view the anecdote with the
greatest amount of skepticism, if not
outright disdain. The anecdote, though
beguiling in its familiar engagement
of our human sensibilities, is, we are
all taught, the enemy of objective,
dispassionate observation.
The anecdote is rife with such
difficulties as openness to interpretation,
and the biases of faulty memory and
foolish optimism; it is just as likely to
be explained by fickle chance as by
anything truly under the clinician’s
control. It is colored by the inflections
Whether we choose
to admit it or not, the
anecdote continues
to be an important
engine of novel ideas in
medicine.
in our voices and shaped by our gestures
and facial expressions. The case report
counts not for academic promotion,
while the randomized controlled trial
of thousands of anonymous subjects
has become the lingua franca of our
profession, and for good reason, as
rigorous epidemiologic studies have
replaced mere conjecture with sound,
evidence-based understanding of the
causes of countless diseases and effective
treatments for them. Yet to offer an
anecdote these days is almost to admit
the insufficiency of one’s knowledge,
and so we do so, at least to our fellow
physicians, very apologetically.
Why Narratives Matter
The inscrutably enduring power of the
anecdote itself is what incites all our
most fearsome defenses. So furious
are we in our rejection of the merely
anecdotal one cannot help but begin to
wonder at it. What is it in the ostensibly
harmless tale my great-grandfather told
about the secret of his longevity being
the small glass of bitters mixed with
a raw egg he downed before bedtime
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Social Medicine in the 21st Century
each night since the age of ten that
rallies us to spend billions of dollars
in grants from the National Institutes
of Health , disbursed every year to
scientists seeking their own more
explicitly pharmaceutical recipes for
living longer? Why does our clinging
to superstition and our willingness to
be intrigued by mystery provoke such
an angry, unrelenting diligence? An
anecdote, after all, is just a story.
The irony in our growing intolerance
of the anecdote is that storytelling
is full of lessons in imagination and
invention so beneficial to the creative
investigator. One of my favorite, if
somewhat hackneyed, anecdotes is
the one told to me by my wise organic
chemistry professor at Amherst
College, who claimed that the
discoverer of the elusive structure of
benzene said his breakthrough idea
of the ring of six carbon atoms linked
by slithering electron bonds came
to him in a wild dream he had of six
snakes swallowing each others’ tails.
Thus we can begin to see how such
dynamic constructs of narrative—the
characterization of carbon atoms as
lithe snakes, the metaphor of slippery
bonds formed by swallowing one
another’s tails—animate the static
Funding: The author received no specific funding for
this article.
Competing Interests: The author has declared that
no competing interests exist.
Citation: Campo R (2006) “Anecdotal evidence”:
Why narratives matter to medical practice. PLoS Med
3(10): e423. DOI: 10.1371/journal.pmed.0030423
DOI: 10.1371/journal.pmed.0030423
Copyright: © 2006 Rafael Campo. This is an
open-access article distributed under the terms
of the Creative Commons Attribution License,
which permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Rafael Campo teaches and practices general internal
medicine at Harvard Medical School and Beth Israel
Deaconess Medical Center, Boston, Massachusetts,
United States of America. He is the author of seven
award-winning books of poetry and prose, most
recently The Healing Art: A Doctor’s Black Bag of Poetry
(W. W. Norton, New York, 2003). E-mail: rcampo@
bidmc.harvard.edu
October 2006 | Volume 3 | Issue 10 | e423
21
Social Medicine in the 21st Century
DOI: 10.1371/journal.pmed.0030423.g001
When we fail to listen to our patients’ stories, we lose the opportunity to discover what
truly ails them
(illustration: Anthony Flores)
concepts that perhaps frustrated more
rigidly linear thinkers in their attempts
to solve what had been an abiding
chemical conundrum.
Whether we choose to admit it or
not, the anecdote continues to be an
important engine of novel ideas in
medicine. No matter how wide the
perceived rift between science and
the humanities, and no matter what
new technologies may deliver unto
us in terms of more precise tests and
life-prolonging therapies, the work
of doctors will always necessarily take
place at the intersection of science
and language. How many of us have
first felt inspired to dig deeper into
a question that first took shape in
the form of “a couple of interesting
cases”—the beginnings of a case series,
in epidemiological parlance—shared by
a colleague over a cup of bad doctors’
lounge coffee?
Our patients’ stories too, if only
we could listen to them less critically
and cynically, might similarly inspire
us to the more practically important
discoveries of what truly ails them.
Yes, we must always be wary of the
ways in which the interlocutor may
lead us astray; the possibility of
violation of the narrative contract,
that implicit agreement between us
PLoS Medicine | www.plosmedicine.org
22
that the story being told is truthful
and offered in the service of best care,
is a real one. A patient in distress
may speak to us across a chasm so
vast that what we can hear is terribly
distorted—by our professional distance,
by our own most unprofessional
fears and misapprehensions, and by
society’s attitudes which inescapably
contextualize our every action.
One common clinical scenario has
become so familiar as to be regarded
as paradigmatic of our distaste
for the subjective. The patient, we
frequently suspect, is exaggerating
her pain to obtain more narcotics, so
we check to see if she is tachycardic,
or whether she perspires or writhes
in her sheets, ever on the lookout for
more reliable objective signs of what
her suspiciously anecdotal description
fails to convey. Yet even in the face of
language’s shortcomings and betrayals,
understanding narrative ultimately helps
us. If we can recognize a breakdown in
our communication with a suffering
patient, we can begin the crucial
process of repair—usually by explicitly
re-establishing the ground rules of
empathetic mutual trust upon which any
exchange of language must be based.
Perhaps it is our own mistrust of
the anecdotal that has engendered
1678
the backlash against science to which
my interrogator at that recent lecture
alluded. We seem to be of two minds
when it comes to science as it relates
to our ever defiantly human bodies.
While we look to medicine to offer
us the fruits of its inquiry into our
innermost life-giving processes, at the
same time we refuse to be entirely
explicated. We want answers, but not
all the answers. We want Tamiflu as
well as talismans to protect us from
avian influenza.
“I Want to Tell You a Story”
The young daughter of a patient of
mine wrote a poem about a flamingo,
“so the birds won’t get mad and make
us sick.” At the bottom of the page
blazed a hot pink stick figure of a bird,
as if she had drawn fever itself. Might
her fervent belief in the power of her
own words somehow stimulate her
immune system to fend off an unlucky
exposure to a bird-borne virus? In all
the millions of epidemiologic studies
we have published in thousands of
medical journals, we have yet to prove
the mechanism behind a phenomenon
evident in nearly all of them: the
placebo effect. Perhaps there remain
ideas about ourselves and our bodies
that can never be summarily studied?
“I want to tell you a story,” another
patient of mine said to me a few
weeks later, back home in Boston, in
the quieter theater of daily life. She
was dying of multiple myeloma that
afternoon. No more melphalan and
prednisone, which had caused diabetes,
nor more thalidomide, which had given
her neuropathy; instead, she received
only morphine now, because all that
was left to treat was her pain. Rain
fell relentlessly outside, streaking the
windows in a way that made me think
inanimate objects might somehow feel
sadness. One of her daughters clutched
my hand. I looked into her mother’s
watery, deep brown eyes, which at that
moment seemed a well of stories so
absorbing and so numerous that they
might unspool forever. “I want to tell
you a story,” she said again. Perhaps
she was going to God, a notion that
consoled us all; perhaps nothing was
left of her but the fading impulse
generated by the brain’s physiology,
whose final expression would be these
last words. But before she could go on,
her breathing stopped—leaving it all
at once plainly obvious, and yet utterly
incomprehensible. �
October 2006 | Volume 3 | Issue 10 | e423
iMedPub :: Thematic Collections :: Volume 1
Essay
Is There a Global Bioethics?
End-of-Life in Thailand
and the Case for Local Difference
Scott Stonington*, Pinit Ratanakul
O
ver the past decade, several
scholars have advocated
for international standards
in medical ethics and human rights
[1–3]. Others have countered that
such standards risk ignoring important
cultural differences in the way people
conceptualize medical decision-making
[4–8]. Within this debate hangs a
question for international bioethics: as
developing countries build allopathic
medical systems, what should their
bioethics be? In this essay, we explore
possible answers to this question,
ultimately arguing that Western
bioethics is insufficient to solve the
problems that arise in the practice of
allopathic medicine in non-Western
contexts.
As an example, we discuss recent
conflicts over the use of mechanical
ventilators in Thailand. Thailand is
a center of cutting-edge allopathic
medical care in Asia. It has a universal
health-care system, which provides
many Thais with access to mechanical
ventilation. So many Thais are placed
on mechanical ventilators at the end
of life that it has become one of the
largest drains on Thailand’s universal
health-care system [9]. Furthermore,
the use of ventilators has become a
source of vehement national debate,
mostly as a result of several prominent
political figures who received overly
aggressive medical care at the end of
life [10,11]. As in Western hospitals,
The Essay section contains opinion pieces on topics
of broad interest to a general medical audience.
PLoS Medicine | www.plosmedicine.org
iMedPub :: Thematic collections :: Volume 1
DOI: 10.1371/journal.pmed.0030439.g001
Most hospitals in Thailand have temples nearby where patients and families can
grapple with the karmic landscape of illness and medicine
(Photo: Scott Stonington)
the ascension of mechanical ventilation
has introduced a host of difficult
ethical dilemmas for doctors, families,
and patients [12,13]. How will Thais
go about solving these dilemmas? On
which principles of bioethics will they
rely?
To answer these questions, we start
with a case that illustrates a common
ethical dilemma about withdrawal
of mechanical ventilation in Thai
intensive care units. We then explore
some concepts from Western bioethics
to see if they help resolve this dilemma.
Finally, we explain some of the local
ethics behind the case and discuss the
concept of a Thai bioethics to address
the use of ventilators in Thailand.
A Case Scenario
The following fictional case is based
on 30 ethnographic interviews and
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Social Medicine in the 21st Century
Funding: The authors received no specific funding
for this article.
Competing Interests: The authors have declared
that no competing interests exist.
Citation: Stonington S, Ratanakul P (2006) Is there
a global bioethics? End-of-life in Thailand and the
case for local difference. PLoS Med 3(10): e439. DOI:
10.1371/journal.pmed.0030439
DOI: 10.1371/journal.pmed.0030439
Copyright: © 2006 Stonington and Ratanakul.
This is an open-access article distributed under the
terms of the Creative Commons Attribution License,
which permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Scott Stonington is in the Department of
Anthropology, History and Social Medicine and
the Department of Internal Medicine, University of
California San Francisco, San Francisco, California,
United States of America. Pinit Ratanakul is Director
of the College of Religious Studies, Mahidol
University, Bangkok, Thailand.
* To whom correspondence should be addressed.
E-mail: scott.stonington@ucsf.edu
October 2006 | Volume 3 | Issue 10 | e439
23
Social Medicine in the 21st Century
two months of participant-observation
fieldwork by one of us (SS) in 2005.
The case contains themes that arose
frequently during this research.
Gaew, a 39-year-old Thai construction
worker, falls from a scaffold and hits his
head on the pavement. He is unconscious
by the time he arrives at one of Bangkok’s
cutting-edge emergency rooms. He is
intubated and placed in the intensive
care unit. Gaew’s physician, Dr. Nok,
informs Gaew’s brother, Lek, that Gaew
has little chance of recovery due to his
lack of brain activity.
Lek does not know what to do—he
wants to give his brother the best care
possible, but he knows his brother is
suffering. He would like to remove
Gaew’s ventilator. Dr. Nok replies that this
is impossible because it is unethical to
remove ventilators. Very few physicians
in Thailand withdraw ventilators from
patients [10]. They have a complex array
of reasons for declining to withdraw
ventilator support, including their
medical training, fear of litigation, and
belief in the sanctity of life.
As with most Thai physicians, Dr.
Nok’s refusal to withdraw the ventilator
is explicitly Buddhist. The first precept
of Buddhism forbids killing. Other
Buddhist doctrines teach that the last
part of the body to die is the breath.
For a Thai Buddhist physician, pulling
out a patient’s ventilator may feel
like pulling out the patient’s soul. If
Dr. Nok withdraws Gaew’s ventilator,
she will necessarily have “ill-will” or
“repugnance” in her mind [14,15]. In
Buddhist terms, Dr. Nok’s own karma is
at stake. Karma is a moral law, central
to lay Thai Buddhism, which describes
chains of cause and effect that result
from individual behavior. Actions
generate either merit or demerit, and
the balance of these two currencies
determines one’s spiritual future
[10,15,16]. If Dr. Nok’s mind contains
ill-will or repugnance, she will accrue
demerit, which will negatively affect her
in this and future lifetimes.
Neither Lek nor Dr. Nok ask what
Gaew would have wanted in his current
situation. They do not ponder this
question because in lay Thai Buddhism,
the self is seen as different from moment
to moment—so Gaew is not the same
person now as he was ten days ago. To
Dr. Nok and Lek, an advance directive
seems ludicrous. How could a person
know what he would want years later, in
a different state of consciousness [10]?
PLoS Medicine | www.plosmedicine.org
24
Dr. Nok is ready with a strategy for
circumventing their dilemma. She tells
Lek that together they must help Gaew
“let go.” She explains that it is Gaew’s
mental attachments that are keeping
him alive and suffering on the ventilator.
When Dr. Nok says “attachments,”
she uses the Thai word for “knot of
problems” (bpom bpan ha), implying a
gnarled set of worries tangling Gaew’s
mind and keeping him from achieving
mental clarity and letting go of life. She
asks Lek what Gaew might be worried
about. Lek replies that Gaew wanted
to ordain as a monk before dying.
Although they cannot know what is
in Gaew’s mind in his new state of
consciousness, this is a possible element
in his “knot.”
Dr. Nok suggests that Lek go to
Bangkok and ordain as a monk for several
days in Gaew’s stead, then return to tell
Gaew what he has done. She explains
that even though Gaew has little brain
activity, when all of the senses subside,
the spirit may still take in sound [15]. She
hopes that when Gaew hears about his
brother’s ordination, he may let go and
die with the ventilator still attached and
running. This way, she and Lek can relieve
Gaew’s suffering without compromising
their karma.
How Would Western Bioethics
Handle this Case?
There has been a recent fervor of
discussion in many Western medical
schools about culture and bioethics [8].
Medical students and physicians are
being trained in “cultural competence”
to help them handle a culturally
diverse society. This training usually
focuses on prototypic cases meant to
exemplify particular cultural or ethnic
groups. In general, it is assumed that
the principles of Western bioethics—
autonomy, beneficence, non-
maleficence, truth-telling, and justice—
are universal. Different cultures are
seen as emphasizing these principles
differently, rather than as operating on
unique principles of their own.
A classic example, taught in many
United States medical schools, is the
story of the “Asian” elder who comes
into the hospital, and whose son says
“please, do not tell my father that he
has cancer.” Most Western physicians
would analyze this situation as follows:
the son believes that knowing about
the illness will hurt his father; the son
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DOI: 10.1371/journal.pmed.0030439.g002
Statues of monks, like this figure at Wat
U Mong Klang Wiang, are common sites
for Thai Buddhists’ offerings
(Photo: Scott Stonington)
values beneficence (doing what is best
for the patient) over autonomy (the
patient’s prerogative to make decisions
for himself) and thus wants to conceal
the illness from his father. In this
analysis, the principles of bioethics
are held to be universal—the son’s
culture simply makes him value these
principles in a unique proportion.
This approach proves unhelpful in
understanding Gaew’s case. Dr. Nok’s
refusal to remove the ventilator is not
based on Gaew’s wishes; it is not based
on what is best for Gaew; and it is not
about what is most truthful, or what is
best for Thais as a whole. None of these
fundamental principles of Western
bioethics—autonomy, beneficence,
non-maleficence, truth-telling, or
justice—sufficiently explain Lek and
Dr. Nok’s dilemma. Even though the
hospital taking care of Gaew is a center
of allopathic medicine—a form of
medicine grown out of the West—it is
nonetheless a zone governed at least
partially by non-Western bioethical
principles.
A tool central to the practice
of bioethics in Western hospitals
is delineating between different
kinds of dilemmas. The most widely
read textbook of bioethics in the
West, by Beauchamp and Childress,
distinguishes between at least
three kinds of dilemmas: (1) ethical
dilemmas, where two ethical principles
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dictate opposite actions; (2) self-
interest dilemmas, where the decision-
maker’s own self-interest conflicts
with a decision dictated by an ethical
principle; and (3) practical dilemmas,
where something logistical prevents an
ethical decision from being enacted
[17]. Making these distinctions is often
the first task that a physician must
complete during an ethics consult. One
must separate the entangled needs of
doctors and family members from the
ethical principles that determine how
to treat a patient.
So what kind of dilemma are Lek
and Dr. Nok confronting? Are the
principles governing their behavior
ethical, practical, or self-interested?
Take, for example, Dr. Nok’s reason
for not withdrawing the ventilator: to
do so would be revoking a patient’s
life. At first, this sounds like an ethical
principle, a kind of non-maleficence.
But on closer inspection, the
principle beneath her action diverges
significantly from non-maleficence. In a
Buddhist framework, killing is ethically
wrong because it defiles the mind of
the killer. Even if Dr. Nok thinks that
withdrawing the ventilator is the most
compassionate thing for Gaew, it would
be spiritually disadvantageous for her.
As one Thai physician explained, “it
may be the best thing for the patient
[to withdraw the ventilator], but how
could you find someone who would do
it?” A Thai physician would not want
to take the risk of acquiring spiritual
demerit.
It would then be tempting to say that
Dr. Nok’s situation represents a self-
interest dilemma. An ethical decision—
compassionately relieving suffering by
removing the ventilator—is in conflict
with Dr. Nok’s concern for her own
spiritual fate. But this interpretation
also breaks down because the precise
thing that would generate demerit
for Dr. Nok is ill-will toward Gaew.
In a Buddhist ethical framework, it is
impossible to withdraw a ventilator with
beneficent intent. In Dr. Nok’s case,
self-interest and ethical duty are so
intertwined as to be indistinguishable.
The distinction made between self-
interest and ethical dilemmas collapses.
The first task of a Western ethicist—to
determine the type of dilemma at
work—proves an impasse in Gaew’s
case.
The fact that a Western bioethical
approach fails in Gaew’s case may be
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iMedPub :: Thematic collections :: Volume 1
an indication of the limitations of
the “one-size-fits-all” bioethics used
in Western hospitals as much as it is
an illustration of local differences in
ethical reasoning (Damien Keown,
personal correspondence). Western
bioethics is a young discipline, and
draws on only a minority of the rich
history of Western ethical philosophy
[18]. Nonetheless, the conceptual
tools of Western bioethics dominate
policy, law, bureaucracy, and physician
decision-making in Western hospitals.
These concepts are beginning to have
weight in policy-making in Thailand
[19]. Gaew’s case makes it clear
that one must examine local ethical
concepts before uncritically importing
Western bioethical tools.
Does Thailand Need a Thai
Bioethics?
Dr. Nok’s solution to Gaew’s end-of-life
is instructive as an introduction to what
a Thai bioethics might look like. Dr.
Nok and Lek cannot remove Gaew’s
ventilator, and yet their compassion
and duty demand that they relieve
his suffering. They circumvent this
dilemma by helping Gaew to let go of
his life peacefully. This strategy has
a positive effect on the karmic fate
of everyone involved. They relieve
Gaew’s suffering. Lek acquires merit by
ordaining as a monk.
These decisions are based on the
logic of karmic morality. They also
illustrate the Buddhist principle of
interdependence. Interdependence
means that doctors, patients and
relatives must think about the emotions
and interests of all parties involved
in a medical decision. This is in
contrast to the Western concept of
autonomy, which allows a patient to
make decisions without consideration
of the feelings and responsibilities of
other people concerned. Dr. Nok’s
solution to Gaew’s end-of-life is not just
for Gaew, it is also for herself and for
Lek. It is an ethics of compassion that
must relieve the suffering of all people
concerned.
One of us (PR), as a member of a
team of Thai scholars, has worked for
the last ten years to develop an applied
ethics using principles such as karma,
compassion, and interdependence
[20–23]. In the West, the main purpose
of a country-wide policy is to resolve
conflicts between individuals over
medical decisions. However, because
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Social Medicine in the 21st Century
the concept of interdependence is
so central for most Thais, Thailand’s
bioethical policies may differ
dramatically from those found in the
West.
Conclusion
The purpose of this exploration has
been to illustrate the need for Thailand
and other countries to develop
bioethical systems using local concepts.
It would be a mistake, however, to leave
our analysis of Thai bioethics without
considering the term “Thai.” This has
long been a problem with writings on
“Asian values” or “Asian thinking.”
In this article, we have emphasized
Buddhism as a major ethical system,
but it is one of many such systems
engaged in decisions about the end-of-
life in Thailand. Buddhist monasteries,
lay Buddhist organizations, advocates
of medical technology, public health
officials, and lobbyists for the booming
medical tourism industry are all
engaged in vehement debate over
what should guide Thailand in making
medical decisions [10,11]. As with
other countries, Thailand is not a
place with a single ethics. In the same
way that one cannot import concepts
from the West to solve dilemmas in
Thailand, one cannot haphazardly
select a view within Thailand and label
it as “Thai.”
Nonetheless, there is an urgent
need for solutions to the “ventilator
problem”—both to patch the failing
universal health-care system and to
help Thais make difficult decisions
about intervention at the end-of-life.
Thailand is just beginning the long
process of integrating its multitude
of local voices and concepts into
nationwide ethical standards. This
new Thai ethics promises to be much
more effective at solving Thailand’s
ethical problems than tools imported
uncritically from the West. �
Acknowledgments
This research was made possible by the
University of California Pacific Rim
Research Program and the University
of California San Francisco Office of
International Programs. I would like
to thank Warapong Wongwachara for
translation, insight, and comments in all
phases of fieldwork. I would like to thank
Gay Becker, Vincanne Adams, China Scherz,
Olivia Para, Sherry Brenner, and Damien
Keown for help with this manuscript.
October 2006 | Volume 3 | Issue 10 | e439
25
Social Medicine in the 21st Century
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Buddhist perspectives on euthanasia. In:
Keown D, editor. Contemporary Buddhist
ethics. Richmond, Surrey (United Kingdom):
Curzon. pp. 169–182.
11. Jackson PA (2003) Buddhadasa: Theravada
Buddhism and modernist reform in Thailand.
Chiang Mai (Thailand): Silkworm Books. 375 p.
12. Kaufman SR (2005) —And a time to die: How
American hospitals shape the end of life. New
York: Scribner. 400 p.
13. Klessig J (1992) The effect of values and
culture on life-support decisions. West J Med
157: 316–322.
14. Keown D (1998) Suicide, assisted suicide and
euthanasia: A Buddhist perspective. J Law
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Relig 13: 385–405.
15. Keown D (2005) End of life: The Buddhist
view. Lancet 366: 952–955.
16. Keown D (1995) Buddhism and bioethics. New
York: St. Martin’s Press. 208 p.
17. Beauchamp TL, Childress JF (2001) Principles
of biomedical ethics. New York: Oxford
University Press. 454 p.
18. Jonsen AR (1998) The birth of bioethics. New
York: Oxford University Press. 431 p.
19. Lindbeck V (1984) Thailand: Buddhism meets
the Western model. Hastings Cent Rep 14:
24–26.
20. Ratanakul P (1988) Bioethics in Thailand: The
struggle for Buddhist solutions. J Med Philos
13: 301–312.
21. Ratanakul P (1990) Thailand: Refining cultural
values. Hastings Cent Rep 20: 25–27.
22. Ratanakul P (1999) Love in Buddhist Bioethics.
Eubios J Asian Int Bioeth 9: 45–46.
23. Boyd A, Ratanakul P, Deepudong A (1998)
Compassion as common ground. Eubios J
Asian Int Bioeth 8: 34–37.
October 2006 | Volume 3 | Issue 10 | e439
iMedPub :: Thematic Collections :: Volume 1
Essay
Ethnic Disparities in Health:
The Public’s Role in Working for Equality
David Satcher
A
s Assistant Secretary for Health
(1998–2001) and Surgeon
General (1998–2002) of the
United States, I had the opportunity
to lead in the development of Healthy
People 2010. Healthy People 2010
is the current phase of the Healthy
People Initiative, which began in 1979
with the vision of making America’s
communities healthier and happier
places (http:⁄⁄www.healthypeople.
gov). Healthy People 2010 is a
comprehensive set of health objectives
to be achieved over the first decade
of the century. The overarching goals
are to increase the quality of life and
years of healthy life for all Americans
and to eliminate racial and ethnic
health disparities [1]. This has been
an ambitious undertaking, but we are
making progress.
Americans have gained 30 years
in life expectancy in the last century
overall, from 47 years in 1900 to 77.6
years in 2003. But African American
men, with a life expectancy of 69.2
years compared to 76.1 years for
African American women and 75.4
years for white men, continue to lag
behind. Nevertheless, all groups have
made significant progress in years
of life lived. However, 50 percent of
persons over 80 are incapacitated
physically, mentally, or both—
illustrating the importance of both
quality of life and years of healthy life.
The significant gender and racial
gaps for African American men are
likely to persist because of death
The Essay section contains opinion pieces on topics
of broad interest to a general medical audience.
PLoS Medicine | www.plosmedicine.org
iMedPub :: Thematic collections :: Volume 1
rates associated with the prevalence
of cardiovascular disease, diabetes,
hypertension, cancer, HIV/AIDS, and
homicide among this group. African
American men are more likely to die
from these diseases, or their associated
problems, and from homicide than
their white counterparts.
The significant gender
and racial gaps for
African American men
are likely to persist.
However, we have made significant
progress in addressing racial and ethnic
disparities in the number of children
immunized and in screenings for breast
cancer. But ethnic and racial disparities
persist in areas such as diabetes, HIV/
AIDS, cardiovascular disease, and
others for both African American men
and women.
What If We Were Equal?
In an attempt to put health disparities
in perspective, for a recent special issue
of Health Affairs devoted to racial and
ethnic disparities, we asked the question,
“What if we had eliminated disparities
in health in the last century?” [2] By
our calculations, there would have been
83,500 fewer black deaths overall in
the year 2000 alone. That would have
included about 24,000 fewer black
deaths from cardiovascular disease.
If infant mortality had been equal
across racial and ethnic groups in
2000, 4,700 fewer black infants would
have died in their first year of life.
Without disparities, there would have
been 22,000 fewer black deaths from
diabetes and almost 2,000 fewer black
women would have died from breast
cancer. Indeed, 250,000 fewer blacks
would have been infected with HIV/
AIDS and 7,000 fewer blacks would
have died from AIDS in 2000. As
many as 2.5 million additional blacks,
including 650,000 children, would have
had health insurance in that year.
1683
Social Medicine in the 21st Century
Seeking Solutions
There are certain key determinants
of health and of disparities in health.
These include physical and social
environments, individual behavior
and biology, access to quality health
care, and policies and interventions
that affect people’s health. Access to
quality health care is a major barrier
to successful health outcomes in the
United States. African Americans and
other racial and ethnic minorities
are disproportionately affected by
problems with access to quality care.
In seeking solutions to the problem
of ethnic disparities, we all must be
proactive as advocates for change. The
general public can work to improve
access to quality care by advocating
for universal access to such care.
This means we must participate in
the democratic process and elect
representatives who will support
legislation that ensures the availability
of and access to quality care for all.
Underrepresented minorities make
up almost 30 percent of America’s
population, but they make up only 14
percent of the physicians in America
[3]. This underrepresentation is
a major barrier for minorities in
accessing quality care. Since African
Funding: The author received no specific funding for
this article.
Competing Interests: The author has declared that
no competing interests exist.
Citation: Satcher D (2006) Ethnic disparities in health:
The public’s role in working for equality. PLoS Med
3(10): e405. DOI: 10.1371/journal.pmed.0030405
DOI: 10.1371/journal.pmed.0030405
Copyright: © 2006 David Satcher. This is an
open-access article distributed under the terms
of the Creative Commons Attribution License,
which permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
David Satcher was the 16th United States Surgeon
General. He is currently the Poussaint-Satcher-Cosby
Professor of Mental Health, Morehouse School of
Medicine, Atlanta, Georgia, United States of America.
E-mail: Joyce H. Nottingham, Special Assistant to Dr.
Satcher, jnottingham@msm.edu
October 2006 | Volume 3 | Issue 10 | e405
27
Social Medicine in the 21st Century
American health professionals are
five times more likely than majority
professionals to serve African American
patients, and Hispanic health
professionals are three times more
likely to serve Hispanic patients, we
must work to elevate the representation
of minorities in the health professions
[4]. These groups should be
introduced to the health professions at
a young age and encouraged to pursue
careers in these areas.
We must understand the relevance of
culture to improving the quality of care.
The cultural background of health-care
providers influences how they interact
with patients, and how they diagnose
and treat health problems. We should
also keep in mind that the cultural
background of patients influences
how, when, and where they present
with illness and how they express it
[5]. A culturally competent health-care
provider or team is able to identify
with, relate to, and accommodate the
cultural background of the patient.
Lifestyle is another major
determinant of health and is critical to
the elimination of health disparities.
The most important lifestyle indicators,
according to the Leading Health
Indicators of Healthy People 2010
(http:⁄⁄www.healthypeople.gov/LHI)
and the Surgeon General’s Prescription
developed in 1999 (http:⁄⁄www.
mediarelations.k-state.edu/WEB/
News/NewsReleases/satchertext92001.
html), are shown in Box 1.
While all of these factors are
important and even crucial to
eliminating disparities in health,
the epidemic of overweight and
obesity and its disproportionate
impact on African Americans and
other minorities is an increasing
and troublesome problem in this
country. Obesity is a major risk factor
for cardiovascular disease, including
hypertension and strokes, as well as
for diabetes and cancer of the breast,
colon, and prostate.
Communities must address policies
at all levels of government to ensure
support for education, physical
exercise, and good nutrition in our
schools. Some states have passed
legislation in this regard.
Environment—both social and
physical—is another major determinant
of health disparities. The social
environment must be targeted,
especially environments of hopelessness
28 PLoS Medicine | www.plosmedicine.org
Box 1. Leading Health
Indicators
• physical activity
• good nutrition (especially
consumption of fruits and vegetables)
• overweight and obesity
• avoidance of toxins, especially tobacco
• responsible sexual behavior, including
delaying or abstaining from sex
where appropriate and minimizing
unplanned pregnancy and sexually
transmitted diseases when sexually
active
that lead children to devalue
themselves and to succumb to drugs,
violence, and premature sexual activity.
And we can all work to create safe and
clean environments for children to
grow up in.
Finally, we must support research
to gain a better understanding of
disparities and to inform different
approaches to eliminate them.
Likewise, more African Americans
need to participate in clinical trials
for the same reasons. A recent
study found that racial and ethnic
minority groups in the US are as
willing as non-minority individuals
to participate in health research,
but are underrepresented among
the invited participants [6]. The
authors of this study concluded
that “efforts to increase minority
participation in health research
should focus on ensuring access to
health research for all groups, rather
than changing minority attitudes.”
Intense research must be conducted in
the areas of biology and genetics and
resources must be devoted to clinical
interventions, health services research,
behavioral research, and community-
based preventive research.
To eliminate disparities in health,
we must be committed to effecting
changes in policies so that universal
access is a reality in this country,
and that access ensures and provides
quality care for all. The elements
for a successful action plan include
universal health insurance; a primary
medical home for every citizen;
proportionate representation of
minority populations in health
professions; bias-free interventions;
nonviolent and exercise-friendly
neighborhoods; nutritious food
1684
Social Medicine in the 21st Century
improve the health and future outlook for her assistance with researching, drafting, health care for underserved populations. N
outlets; educational equality; career and editing this paper. Engl J Med 334: 1305–1310.
of our children, we must advocate for
opportunities; parity in income and 5. Kleinman A, Benson P (2006) Anthropology in
these changes. the clinic: The problem of cultural competency
wealth; homeownership; and hope. References and how to fix it. PLoS Med 3(10): e294. DOI:
1. United States Department of Health and 10.1371/journal.pmed.0030294
Conclusion
Adapting the McKinlay Model Human Services (2005) Healthy people 6. Wendler D, Kington R, Madans J, Wye GV,
We all have roles to play in the 2010: The cornerstone for prevention. Christ-Schmidt H, et al. (2006) Are racial and
to Eliminate Health Disparities Available: http:⁄⁄www.healthypeople.gov/ ethnic minorities less willing to participate
elimination of ethnic disparities in Publications/Cornerstone.pdf. Accessed 24
The McKinlay Model [7–9], which has in health research? PLoS Med 3(2): e19.
health. We must all care enough; August 2006. DOI:10.1371/journal.pmed.0030019
been used in the context of increasing 2. Satcher D, Fryer GE Jr, McCann J, Troutman
we must know enough; we must do 7. McKinlay JB (1995) The new public health
physical activity in older adults and A, Woolf SH, et al. (2005) What if we were approach to improving physical activity and
enough; and we must persist in our equal? A comparison of the black-white autonomy in older populations. In: Heikkinen
improving child nutrition, identifies
efforts until health disparities are mortality gap in 1960 and 2000. Health Aff E, editor. Preparation for aging. New York:
three levels for the involvement of (Millwood) 24: 459–464. Plenum Press. pp.87–103.
eliminated in this country. �
the individual, community, and policy 3. American Medical Association (2006) Physician 8. Satcher D (2006) The prevention challenge
makers that can be targeted in the
characteristics and distribution in the US, 2006. and opportunity. Health Aff (Millwood) 25:
Acknowledgments Chicago: AMA Press. 400 p. 1009–1011.
elimination of health disparities. These 4. Komaromy M, Grumbach K, Drake M, 9. McKinlay J, Marceau L (2000) US public health
I would like to thank Joyce H. Nottingham, Vranizan K, Lurie N, et al. (1996) The role and the 21st century: Diabetes mellitus. Lancet
three levels are labeled downstream,
PhD, Special Assistant to Dr. David Satcher, of black and Hispanic physicians in providing 356: 757–761.
midstream, and upstream.
Downstream. Here the focus is on
the individual and his or her lifestyle
or behavior. Regular physical activity,
good nutrition, and compliance
with immunization schedules are
emphasized, as well as the importance
of avoidance of toxins such as
tobacco and excessive alcohol. At
the downstream level we have the
challenge of educating and motivating
individuals toward healthy lifestyles.
Changing individual behavior is never
easy and it remains one of the greatest
challenges in medicine and public
health.
Midstream. The midstream focus is
on communities and institutions within
communities. The availability of safe
streets, walking and biking trails, and
safe, well-equipped parks is critical
for prevention of injury and illness.
Schools are urged to provide physical
education in grades K–12 (primary and
secondary education) and to teach and
model good nutrition. The availability
of supermarkets with affordable
fresh fruits and vegetables is equally
important. The challenge here is that
many communities do not have the
resources to make these changes.
Upstream. This is the level at which
policies that support the elimination
of health disparities must be made.
School boards and legislators can
mandate physical education in K–12
and limit vending machines at schools
to healthy foods or at least a balance of
foods. The United States Department
of Agriculture can require schools that
participate in federal food programs
to provide health-enhancing foods,
beginning with the breakfast program.
Those same schools can be required
to create programs to help children
to develop lifetime habits of physical
activity and good nutrition. To
PLoS Medicine | www.plosmedicine.org 1685 October 2006 | Volume 3 | Issue 10 | e405
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Thematic Collections
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Social Medicine in the 21st Century
Policy Forum
Structural Violence and Clinical Medicine
Paul E. Farmer*, Bruce Nizeye, Sara Stulac, Salmaan Keshavjee
B
ecause of contact with
patients, physicians readily
appreciate that large-scale social
forces—racism, gender inequality,
poverty, political violence and war,
and sometimes the very policies that
address them—often determine who
falls ill and who has access to care.
For practitioners of public health, the
social determinants of disease are even
harder to disregard.
Unfortunately, this awareness
is seldom translated into formal
frameworks that link social analysis
to everyday clinical practice. One
reason for this gap is that the holy
grail of modern medicine remains
the search for the molecular basis
of disease. While the practical yield
of such circumscribed inquiry has
been enormous, exclusive focus
on molecular-level phenomena
has contributed to the increasing
“desocialization” of scientific inquiry:
a tendency to ask only biological
questions about what are in fact biosocial
phenomena [1].
Biosocial understandings of medical
phenomena are urgently needed.
All those involved in public health
sense this, especially when they
serve populations living in poverty.
Social analysis, however rudimentary,
occurs at the bedside, in the clinic,
in field sites, and in the margins of
the biomedical literature. It is to be
found, for example, in any significant
survey of adherence to therapy for
chronic diseases [2,3] and in studies
of what were once termed “social
diseases” such as venereal disease
and tuberculosis (TB) [4–8]. The
The Policy Forum allows health policy makers around
the world to discuss challenges and opportunities for
improving health care in their societies.
PLoS Medicine | www.plosmedicine.org
30
emerging phenomenon of acquired
resistance to antibiotics—including
antibacterial, antiviral, and
antiparasitic agents—is perforce a
biosocial process, one which began
less than a century ago as novel
treatments were introduced [9].
Social analysis is heard in discussions
about illnesses for which significant
environmental components are
believed to exist, such as asthma and
lead poisoning [10–15]. Can we speak
of the “natural history” of any of these
diseases without addressing social
forces, including racism, pollution,
poor housing, and poverty, that shape
their course in both individuals and
populations? Does our clinical practice
acknowledge what we already know—
namely, that social and environmental
forces will limit the effectiveness
of our treatments? Asking these
questions needs to be the beginning
Box 1. What Is Structural
Violence?
Structural violence, a term coined
by Johan Galtung and by liberation
theologians during the 1960s, describes
social structures—economic, political,
legal, religious, and cultural—that stop
individuals, groups, and societies from
reaching their full potential [57]. In its
general usage, the word violence often
conveys a physical image; however,
according to Galtung, it is the “avoidable
impairment of fundamental human
needs or…the impairment of human life,
which lowers the actual degree to which
someone is able to meet their needs
below that which would otherwise be
possible” [58]. Structural violence is often
embedded in longstanding “ubiquitous
social structures, normalized by stable
institutions and regular experience” [59].
Because they seem so ordinary in our
ways of understanding the world, they
appear almost invisible. Disparate access
to resources, political power, education,
health care, and legal standing are just
a few examples. The idea of structural
violence is linked very closely to social
injustice and the social machinery of
oppression [16].
1686
of a conversation within medicine and
public health, rather than the end of
one.
Defining Structural Violence
The term “structural violence” is one
way of describing social arrangements
that put individuals and populations
in harm’s way (see Box 1) [16]. The
arrangements are structural because
they are embedded in the political and
economic organization of our social
world; they are violent because they
cause injury to people (typically, not
those responsible for perpetuating
such inequalities). With few exceptions,
clinicians are not trained to understand
such social forces, nor are we trained
to alter them. Yet it has long been clear
that many medical and public health
Funding: The authors received no specific funding
for this article.
Competing Interests: The authors have declared
that no competing interests exist.
Citation: Farmer PE, Nizeye B, Stulac S, Keshavjee S
(2006) Structural violence and clinical medicine. PLoS
Med 3(10): e449. DOI: 10.1371/journal.pmed.0030449
DOI: 10.1371/journal.pmed.0030449
Copyright: © 2006 Farmer et al. This is an
open-access article distributed under the terms
of the Creative Commons Attribution License,
which permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Abbreviations: ART, antiretroviral therapy; MTCT,
mother-to-child transmission; PIH, Partners In Health;
TB, tuberculosis
Paul E. Farmer is the Presley Professor of Medical
Anthropology, Department of Social Medicine,
Harvard Medical School, Boston, Massachusetts,
United States of America. He is also in the Division
of Social Medicine and Health Inequalities, Brigham
and Women’s Hospital, Boston, Massachusetts,
United States of America, and at Partners In Health,
Boston, Massachusetts, United States of America
and Inshuti Mu Buzima, Rwinkwavu, Rwanda. Bruce
Nizeye is Director of the Program on Social and
Economic Rights, and Sara Stulac is Director of
Pediatric Programs, Inshuti Mu Buzima, Rwinkwavu,
Rwanda. Salmaan Keshavjee is an instructor at the
Department of Medicine, Harvard Medical School,
Boston, Massachusetts, United States of America,
and a physician working with both the Division of
Social Medicine and Health Inequalities, Brigham and
Women’s Hospital, Boston, Massachusetts, United
States of America, and Partners In Health, Boston,
Massachusetts, United States of America.
* To whom correspondence should be addressed.
E-mail: paul_farmer@hms.harvard.edu
October 2006 | Volume 3 | Issue 10 | e449
iMedPub :: Thematic Collections :: Volume 1
interventions will fail if we are unable
to understand the social determinants
of disease [17,18].
The good news is that such
biosocial understandings are far more
“actionable” than is widely recognized.
There is already a vast and growing
array of diagnostic and therapeutic
tools born of scientific research; it is
possible to use these tools in a manner
informed by an understanding of
structural violence and its impact on
disease distribution and on every step
of the process leading from diagnosis
to effective care. This means working
at multiple levels, from “distal”
interventions—performed late in the
process, when patients are already
sick—to “proximal” interventions—
trying to prevent illness through efforts
such as vaccination or improved water
and housing quality.
As with many other concepts,
structural violence has its limitations
[19]. Nevertheless, we seek to apply the
concept to what remain the primary
tasks of clinical medicine: preventing
premature death and disability and
improving the lives of those we care
for. Using the concept of structural
violence, we intend to begin, or revive,
discussions about social forces beyond
the control of our patients.
These forces are not beyond the
reach, however, of practitioners of
medicine and public health. In this
article, we describe examples of the
impact of structural violence upon
people living with HIV in the United
States and in Rwanda. In both cases,
we show that it is possible to address
structural violence through structural
interventions. We then draw general
lessons from these examples for
health professionals and policy makers
worldwide.
Delivering AIDS Care Equitably
in the United States
The distribution and outcome of
chronic infectious diseases, such as
HIV/AIDS, are so tightly linked to
social arrangements that it is difficult
for clinicians treating these diseases to
ignore social factors. Although AIDS
is often considered a “social disease,”
clinicians may have radically different
understandings of what makes AIDS
“social.” Many doctors have focused on
the “behaviors” or “lifestyles” that place
some at risk for HIV infection [20–23].
Yet risk has never been determined
PLoS Medicine | www.plosmedicine.org
iMedPub :: Thematic collections :: Volume 1
DOI: 10.1371/journal.pmed.0030449.g001
Figure 1. Components of the Package for Prevention of Mother-to-Child Transmission of HIV
Provided by Partners In Health/Inshuti Mu Buzima in Rwanda
Photo: Ophelia Dahl, Partners In Health
solely by individual behavior:
susceptibility to infection and poor
outcomes is aggravated by social factors
such as poverty, gender inequality,
and racism [24–26]. Unsurprisingly,
in less than a decade AIDS became
a disease that disproportionately
affected America’s poor, many of
whom engaged in “risk behaviors” at
a far lower rate than others who were
not at heightened risk of infection with
sexually transmitted diseases [27–29].
Factors affecting disease course.
HIV attacks the immune system in
only one way, but its course and
outcome are shaped by social forces
having little to do with the universal
pathophysiology of the disease. From
the outset of acute HIV infection to the
endgame of recurrent opportunistic
infections, disease course is determined
by, to cite but a few obvious factors:
(1) whether or not postexposure
prophylaxis is available; (2) whether
or not the steady decline in immune
function is hastened by concurrent
illness or malnutrition; (3) whether or
not multiple HIV infections occur; (4)
whether or not TB is prevalent in the
surrounding environment; (5) whether
or not prophylaxis for opportunistic
infections is reliably available [30]; and
(6) whether or not antiretroviral therapy
(ART) is offered to all those needing it.
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Social Medicine in the 21st Century
Throughout the usually decade-
long process of HIV progression,
detrimental social structures and
constructs—structural violence—
have a profound influence on
effective diagnosis, staging, and
treatment of the disease and its
associated pathologies. Each of these
determinants of disease course and
outcome is itself shaped by the very
social forces that determine variable
risk of infection.
Although the variability of outcomes
has been especially obvious in the
era of effective therapy, it was so even
before ART became widely available.
In Baltimore in the early 1990s, Moore
et al. showed that race was associated
with the timely receipt of therapeutics:
among patients infected with HIV,
blacks were significantly less likely
than whites to have received ART or
Pneumocystis pneumonia prophylaxis
when they were first referred to an
HIV clinic, regardless of disease stage
at the time of presentation [31].
The timeline from HIV infection
to death was further shortened in
situations where TB was the leading
opportunistic infection, as it is in
much of the poor world [32]. These
fundamentally biosocial events call
into question a “natural history” of
HIV infection and AIDS.
October 2006 | Volume 3 | Issue 10 | e449
31
Social Medicine in the 21st Century
Addressing disparities in HIV care.
In an attempt to address these ethnic
disparities in care, researchers and
clinicians in Baltimore reported how
racism and poverty—forms of structural
violence, though they did not use these
specific terms—were embodied [33,34]
as excess mortality among African
Americans without insurance. After
documenting these disparities, these
clinicians and researchers asked: what
would happen if race and insurance
status no longer determined who had
access to the standard of care?
Their subsequent interventions
were decidedly proximal: in addition
to removing some of the obvious
economic barriers at the point of
care, the clinicians and researchers
considered paying for transportation
costs and other incentives as well
as addressing comorbid conditions
ranging from drug addiction to
mental illness. They also implemented
improvements in community-based
care, conceived to make AIDS
care more convenient and socially
acceptable for patients. The goal was
to make sure that nothing within the
medical system or the surrounding
community prevented poor and
otherwise marginalized patients from
receiving the standard of care.
The results registered just a few
years later were dramatic: racial,
gender, injection-drug use, and
socioeconomic disparities in outcomes
largely disappeared within the study
population [35]. In other words,
these program improvements may not
have dealt with the lack of national
health insurance, and still less with
the persistent problems of racism and
urban poverty, but they did lessen the
embodiment of social inequalities as
premature death from AIDS. Similar
work elsewhere has shown the ability
of providers to lessen the impact of
social inequalities on AIDS outcomes
among the homeless, the addicted, the
mentally ill, and prisoners [36–38].
The program in Baltimore was
improved in part by linking an
understanding of social context to
clinical services. The importance of
such programs is underscored by the
emergence of multidrug-resistant HIV
in the United States [39]. Microbial
acquisition of resistance to antibiotics,
including antiretrovirals, is necessarily
a biosocial phenomenon. Most
microbes mutate when challenged with
PLoS Medicine | www.plosmedicine.org
32
antibiotics; the rate of mutation may be
hastened by imprudent use of antibiotics
or by inadequate or interrupted therapy
[40,41]. Although structural violence
lessens both access and adherence to
effective therapy, it is a rarely discussed
contributor to epidemics of multidrug-
resistant HIV. In reality, it is impossible
to understand the dynamics of drug-
resistant disease without understanding
how structural violence is embodied
at the community, individual, and
microbial levels [9,42]. The lessons from
Baltimore show us that by viewing access
to care and adherence to treatment as
structural issues requiring programmatic
solutions, we can alter the very biology
of HIV and the “natural history” of
AIDS.
Preventing Pediatric AIDS in
Rwanda: Lessons from Rural Haiti
The impact of structural violence
is even more obvious in the world’s
poorest countries and has profound
implications for those seeking to
provide clinical services there. Over the
past year, working with the nonprofit
organization Partners In Health (PIH),
we have sought to address AIDS and
TB in Africa, the world’s poorest and
most heavily burdened continent.
Specifically, we have transplanted and
adapted the “PIH model” of care,
which was designed in rural Haiti to
prevent the embodiment of poverty
and social inequalities as excess
mortality due to AIDS, TB, malaria, and
other diseases of poverty [43,44].
The PIH model. In some senses,
the model is simple: clinical and
community barriers to care are
removed as diagnosis and treatment
are declared a public good and made
available free of charge to patients
living in poverty. Furthermore, AIDS
care is delivered not only in the
conventional way at the clinic, but also
within the villages in which our patients
work and live.
Each patient chooses an
accompagnateur, usually a neighbor,
trained to deliver drugs and other
supportive care in the patient’s home.
Using this model, we currently provide
daily supervised ART to more than
2,200 patients in rural Haiti. This
model, with conventional clinic-based
(distal) services complemented by
home-based (more proximal) care, is
deemed by some to be the world’s most
effective way of removing structural
1688
barriers to quality care for AIDS and
other chronic diseases. It is also a way
of creating jobs in rural regions in great
need of them. We have used a similar
model in urban Peru [45,46], and in
Boston, Massachusetts [37].
The challenge of HIV in Rwanda.
Rwanda presents unique challenges,
but many barriers to care are quite
similar to those seen in Haiti and other
settings where social upheaval, poverty,
and gender inequality decrease the
effectiveness of distal services and of
prevention efforts. Like Haiti, Rwanda
is a densely populated, predominantly
agrarian society. Although both
countries have endured large-scale
political violence, that which registered
a decade ago in Rwanda due to war and
genocide was unprecedented in scale.
In the two rural districts of Rwanda in
which the PIH model was introduced
in May 2005, an estimated 60 percent
of inhabitants are refugees, returning
exiles, or recent settlers; not a single
physician was present to serve 350,000
people.
AIDS has recently worsened this
situation and is a leading cause of
young adult death. In spite of the
availability of significant resources to
treat complications of HIV infection
in Africa, almost all patients enrolled
on ART live in cities or towns. Indeed,
some have noted that rapid treatment
scale-up is likely to occur largely in
urban settings, where infrastructure,
though poor, is better than in rural
regions [47]. The challenge, however,
is to reach rural Africa, where fewer
than five percent of those who need
ART receive it. Rural treatment scale-
up is far from impossible: less than a
year after our program began in 2005,
more than 1,500 rural Rwandans with
AIDS were already enrolled in care
using the PIH model.
To deepen our discussion of
interventions designed to counter
structural violence, consider the
prevention of mother-to-child
transmission (MTCT) of HIV in
rural Rwanda. Where clean water is
unavailable and HIV prevalence is
high, the policy of universal breast-
feeding—driven by the desire to reduce
diarrhea-related mortality—leads to
increased transmission of the virus to
infants, even when ART is offered. We
knew from our experience in Haiti that
we could reduce rates of MTCT from as
high as 25 to 40 percent to as low as two
October 2006 | Volume 3 | Issue 10 | e449
iMedPub :: Thematic Collections :: Volume 1
percent. We knew that such a dramatic
reduction could be made possible by:
(1) providing combination ART to the
mother during pregnancy; (2) enabling
formula-feeding and close follow-up
of infants; and (3) launching potable
water projects within the catchment
area—in even the most difficult
regions, where electricity is scarce, food
insecurity widespread, and health and
sanitation infrastructure rudimentary at
best [48].
Although our pilot project in
Rwanda is only a year old, its feasibility
is almost certain. In the first six
months of operation, we screened
for HIV infection more than 31,000
persons in the two districts in which
we work. Without exception, pregnant
women found to be infected with HIV
expressed interest in ART to prevent
MTCT, and all requested assistance not
only with procuring infant formula, but
also with the means to boil water and to
store the formula safely (Figure 1).
Medical professionals
are not trained to make
structural interventions.
Our distal intervention is to provide
ART to all women in the catchment
area with the help of accompagnateurs.
More proximal interventions include
the distribution of kerosene stoves,
kerosene, bottles, and infant formula;
we also provide food aid and housing
assistance when possible. Already, we
are seeing a lowering of HIV infection
rates amongst newborns, and we
believe that, as the program becomes
well established and services become
available earlier during the course of
pregnancy, rates of MTCT will continue
to decline.
Unsurprisingly, opposition to the
PIH model did not come from rural
Rwandan women living with HIV.
Rather, we faced the most resistance
to this approach from local and global
health policy makers who continued
to promote universal breast-feeding, a
policy which made eminent sense prior
to the advent of HIV. Instead of trying
to overcome programmatic barriers,
the experts argued that formula-
feeding was simply not feasible in rural
Rwanda and that HIV-related stigma
would prevent women from enrolling
in such projects.
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iMedPub :: Thematic collections :: Volume 1
The examples of Rwanda and Haiti
have shown us that, to date, there is
little reason to believe that thoughtful
structural interventions will fail to
improve HIV prevention and treatment
outcomes. Any failure is more likely
to be due to programmatic shortfalls
than to stigma or to non-compliance
on the part of the patients enrolled in
the program. Structural interventions
of the sort described here remove the
onus of adherence from vulnerable
patients and place it squarely on the
health system and on providers.
Incorporating Structural
Interventions in Medicine
and Public Health
If structural violence is often a major
determinant of the distribution
and outcome of disease, why is it
or a similar concept not in wider
circulation in medicine and public
health, especially now that our
interventions can radically alter clinical
outcomes? One reason is that medical
professionals are not trained to make
structural interventions. Physicians
can rightly note that structural
interventions are “not our job.” Yet,
since structural interventions might
arguably have a greater impact on
disease control than do conventional
clinical interventions, we would do well
to pay heed to them.
Acknowledging and addressing
structural impediments, however,
should never be the sole focus of our
work. For decades, those who study
the determinants of disease have
known that social or structural forces
account for most epidemic disease.
But truisms such as “poverty is the root
cause of tuberculosis” have not led us
very far. While we do not yet have a
curative prescription for poverty, we
do know how to cure TB. Those who
argue that focusing solely on economic
development will in time wipe out
tuberculosis may be correct, but en
route toward this utopia the body count
will remain high if care is not taken to
diagnose and treat the sick. The same
holds true for other diseases of poverty.
Clean water and sanitation will prevent
cases of typhoid fever, but those who
fall ill need antibiotics; clean water
comes too late for them.
The debate about whether to focus
on proximal versus distal interventions,
or similar debates about how best to use
scarce resources, is as old as medicine
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Social Medicine in the 21st Century
itself. But there is little compelling
evidence that we must make such
either/or choices: distal and proximal
interventions are complementary, not
competing. International public health
is rife with false debates along precisely
these lines, and the list of impossible
choices facing those who work among
the destitute sick seems endless. In
reality, there is no good way to tackle
the health crisis in Africa when the
scant resources previously available are
so bitterly contested; thus is structural
violence perpetuated at a time in which
science and medicine continue to yield
truly miraculous tools. Without an
equity plan to bring these tools to bear
on the health problems of the destitute,
these debates will continue to waste
precious time [49].
The lessons of Baltimore, Haiti,
and Rwanda. What are the lessons
that can be drawn from the examples
of successful structural interventions
in the diverse settings of Baltimore,
rural Haiti, and rural Rwanda? First,
we have seen that it is possible to
decrease the extent to which social
inequalities become embodied
as health disparities. While some
interventions are straightforward, we
also have to recognize that there is an
enormous flaw in the dominant model
of medical care: as long as medical
services are sold as commodities, they
will remain available only to those who
can purchase them. National health
insurance and other social safety
nets, including those that guarantee
primary education, food security, and
clean water, are important because
they promise rights, rather than
commodities, to citizens. The lack of
these social and economic rights is
fundamental to the perpetuation of
structural violence [50].
Second, we have learned that
proximal interventions, seemingly quite
remote from the practice of clinical
medicine, can also lessen premature
morbidity and mortality. To put this
in sociological terms, interventions
that increase the agency of the poor
will lessen their risk of HIV. Similarly,
it is not possible to have an honest
discussion of alcoholism among Native
Americans [51], or crack cocaine
addiction among African Americans
[52], without discussing the history of
genocide and slavery in North America.
Again, such commentary is often seen
as extraneous in medical and public
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33
Social Medicine in the 21st Century
health circles, where discussions
of substance abuse are curiously
desocialized, viewed as personal and
psychological problems rather than
societal ones. Here, too, structural
violence is perpetuated through
analytic omission.
Third, we have seen that structural
interventions can have an enormous
impact on outcomes, even in the face
of cost-effectiveness analyses and the
flawed policies of international bodies.
Taking the components of the distal
interventions already underway in
Rwanda—infant formula, clean water,
fuel, and so forth—it is possible to go
further and describe more proximal
interventions to improve access to
each component of the project. These
would include, of course, legislation
to promote generic medications,
improved distribution networks for
ART and infant formula, clean-water
campaigns, and the development of
alternative fuels. More proximally
still, they would include enhancing
agricultural production; creating
new jobs outside of the agricultural
sector; addressing gender inequality
through legislation about land tenure
and political representation [53]; and
promoting adult literacy.
These are not the tasks for which
clinicians were trained, but they are
central to the struggle to reduce
premature suffering and death. The
importance of structural interventions
for the future of health care means
that practitioners of medicine and
public health must make common
cause with others who are trained to
intervene more proximally. Sometimes
public health crises, such as the AIDS
pandemic in Africa, can lead to bold
and specific interventions, such as the
campaign to provide AIDS prevention
and care as a public good [54]. When
linked to more structural interventions,
such ostensibly specific campaigns can
help to trigger a “virtuous social cycle”
that promises to shift the burden of
pathology away from children and
young adults—a major victory in the
struggle to lessen structural violence.
Conclusions
Pioneers of modern public health
during the nineteenth century, such
as Rudolph Virchow, understood
that epidemic disease and dismal
life expectancies were tightly linked
to social conditions [55,56]. Such
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34
leaders might not have employed
the term “structural violence,” but
they were well aware of its toll and
argued compellingly for proximal
interventions: education, basic
sanitation, land reform, sovereignty,
and an end to political oppression.
These interventions are no less needed
now that we have better distal tools,
including vaccines, diagnostics, and
a large armamentarium of effective
therapeutics.
It does not matter what we call it:
structural violence remains a high-
ranking cause of premature death and
disability. We can begin to address this
by “resocializing” our understanding of
disease distribution and outcome. Even
new diseases such as AIDS have quickly
become diseases of the poor, and the
development of effective therapies may
have a perverse effect if we are unable
to use them where they are needed
most. By insisting that our services be
delivered equitably, even physicians
who work on the distal interventions
characteristic of clinical medicine have
much to contribute to reducing the
toll of structural violence. The poor
are the natural constituents of public
health, and physicians, as Virchow
argued, are the natural attorneys of the
poor. In this struggle, equity in health
care is our responsibility. Only when
we link our efforts to those of others
committed to initiating virtuous social
cycles can we expect a future in which
medicine attains its noblest goals. �
Acknowledgments
The authors work with large teams of
providers—accompagnateurs, social workers,
nurses, physicians—in both Haiti and
Rwanda. We are deeply grateful to our
colleagues.
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Social Medicine in the 21st Century
Policy Forum
Time to Regenerate:
Ecosystems and Health Promotion
Colin D. Butler*, Sharon Friel
T
he concept of health promotion
gradually emerged from the
discipline of public health
during the 1970s. In the mid-19th
century, founders of the growing
discipline of public health had
stressed the importance of social,
political, and environmental factors
as key determinants of disease and
health. However, as microbiology
and epidemiology developed, and
as the most egregious examples of
environmental and social abuse faded
from view in developed countries,
emphasis on these factors waned
within mainstream public health,
which remained best established in
industrialised countries.
As globalisation gathered
momentum, and as decolonisation
proceeded, interest in social
determinants of health re-surfaced
[1], culminating in the primary health
care (PHC) movement [2–4] and the
seminal Health for All declaration.
The declaration, made at the 1978
International Conference on Primary
Health Care convened in Alma Ata,
Kazakhstan, included the statement
that “an acceptable level of health for
all the people of the world by the year
2000 can be attained” [5].
The PHC movement called for the
balancing of purely medical aspects
of health care with greater emphasis
upon the social, economic, and political
determinants of health, particularly for
those members of the global population
whose income was low. Eight years
The Policy Forum allows health policy makers around
the world to discuss challenges and opportunities for
improving health care in their societies.
PLoS Medicine | www.plosmedicine.org
36
later, in November 1986, the Ottawa
Charter was signed, and this remains
the best-known declaration of the
principles of health promotion [6]. This
charter asserted that environmental and
ecological factors are of fundamental
importance for health.
Since 1986, the evidence linking
health to ecological and environmental
factors (such as climate change,
biodiversity loss, and the mental health
benefits of exposure to nature) has
strengthened considerably, stimulating
a new discipline, sometimes called
“ecohealth” (see Sidebar). However,
we believe that paradoxically,
recognition of the importance of
environmental and ecological factors
Sidebar: Ecohealth
Ecohealth extends traditional
environmental health by studying
the relationship between health and
explicitly ecological factors such as
biodiversity and ecosystem “services”
[27]. There are four kinds of services:
“provisioning” (e.g., food), “regulating”
(e.g., climate), “cultural” (e.g., sacred
groves), and “supporting” (e.g., the
maintenance of soil fertility by worms).
More subtly, ecohealth borrows insights
developed by human ecology to
understand and predict health through
consideration of the relationships
between human populations and
between human and non-human
species. At the largest scale, ecohealth
differs conceptually from traditional
environmental health in considering
humans as a part of the global
biosphere—the systemic, interacting
forces which regulate life and its
inorganic substrate [28]. Falling within
this scope are topics such as health and
the global atmosphere, including climate
change, stratospheric ozone depletion,
and the movement of transcontinental
air pollution and dust clouds. Even more
broadly, ecohealth grapples with the
sustainability of civilisation, and therefore
of human health [11].
1692
has simultaneously declined among
proponents of health promotion.
This essay traces and analyses the
growing separation between health
promotion and ecohealth. We call
upon health promotion advocates to
strongly re-engage with environmental
and ecological issues, and to form
active alliances with advocates of
ecohealth. We believe this will
strengthen health promotion, benefit
ecohealth, and help to promote and
protect sustainable global health.
Health Promotion
Health promotion seeks to understand
and address the complex constellation
of social, environmental, and political
factors that underpin health. These
factors, often described simply as the
“social determinants of health” [1], are
“upstream” of more obvious proximal
causes of health outcomes. This
distance upstream can be temporal or
conceptual.
Funding: The authors received no specific funding
for this article.
Competing Interests: The authors have declared
that no competing interests exist.
Citation: Butler CD, Friel S (2006) Time to regenerate:
Ecosystems and health promotion. PLoS Med 3(10):
e394. DOI: 10.1371/journal.pmed.0030394
DOI: 10.1371/journal.pmed.0030394
Copyright: © 2006 Butler and Friel. This is an
open-access article distributed under the terms
of the Creative Commons Attribution License,
which permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Abbreviations: PHC, primary health care; WHO,
World Health Organization
Colin Butler is Senior Research Fellow in Global
Health at Deakin University, School of Health and
Social Development, Melbourne, Victoria, Australia.
Sharon Friel is Research Fellow at the National Centre
for Epidemiology and Population Health, Australian
National University, Canberra, Australian Capital
Territory, Australia, and Principal Research Fellow,
Global Commission on Social Determinants of Health,
Department of Epidemiology and Public Health,
University College London, London, United Kingdom.
* To whom correspondence should be addressed.
E-mail: colin.butler@deakin.edu.au
October 2006 | Volume 3 | Issue 10 | e394
iMedPub :: Thematic Collections :: Volume 1
DOI: 10.1371/journal.pmed.0030394.g001
Figure 1. Labonté’s 1993 Description of a Holosphere of Healthy Communities, with Health at
the Centre (Derived from [8]).
The interacting environmental spheres include a viable and sustainable natural environment and a
sustainable economy.
The Alma Ata conference identified
two of eight essential components
of PHC as environmental: adequate
nutrition and safe water, and basic
sanitation. The Ottawa Charter,
regarded as a milestone in the
development of health promotion, paid
even more attention to environmental
issues than did Alma Ata. The charter
emphasised the role of a “stable
ecosystem” and sustainable resources as
fundamental conditions and resources
for health. The Charter declared: “The
fundamental conditions and resources
for health are peace, shelter, education,
food, income, a stable eco-system,
sustainable resources, social justice and
equity” [6].
Of these nine fundamental elements,
three (food, a stable ecosystem, and
sustainable resources) are directly
related to environmental factors, while
three others (peace, social justice,
and equity) often depend on the
distribution of environmental and
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ecological resources. The Charter
further stated: “The conservation of
natural resources throughout the
world should be emphasized as a global
responsibility... Systematic assessment
of the health impact of a rapidly
changing environment—particularly
in areas of…energy production and
urbanization—is essential…The
protection of the natural and built
environments and the conservation of
natural resources must be addressed in
any health promotion strategy” [6].
Health Promotion, Ecohealth, and
Global Environmental Change
An understanding of the effect of the
physical environment on health is
ancient, and environmental health has
been central to public health since its
foundation in the mid-19th century.
However, the concept of “ecohealth” is
far more recent (see Sidebar) [7].
The central concepts of ecohealth
seem to have been well understood
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Social Medicine in the 21st Century
by the drafters of the founding
documents of both health promotion
and PHC [8]. Foreshadowing the
“Earth Summit” held in Rio de Janeiro
in 1992, Maurice King, a pioneer of
the PHC movement, called upon the
World Health Organization (WHO)
in 1990 to incorporate the word
“sustainable” into its definition of
health [9]. Concerns about global
environmental change persisted within
the health promotion movement in its
early years (see Figure 1). The Third
International Conference on Health
Promotion, convened by WHO in
Sundsvall, Sweden in 1991, stressed
the importance of environmental
health, stating: “The issues of health,
environment and human development
cannot be separated. Development
must imply improvement in the quality
of life and health while preserving the
sustainability of the environment” [10].
Since the Earth Summit, the
evidence for adverse environmental
change at the global scale has
strengthened alarmingly [11–14].
Humanity has overloaded the Earth’s
capacity to absorb waste and damaged
many ecosystem “provisioning” services,
such as pristine water and fisheries
[12]. The reality and potential severity
of ongoing climate change is now
widely accepted. Erosion and other
forms of soil damage, increasing
oil scarcity, and the still expanding
global population combine to place
food security at risk, particularly
in Africa [15,16]. Ample food to
eradicate human hunger has been
grown for a long time, but worsening
maldistribution of food means the
absolute number of hungry people is
again rising [17].
While adverse global environmental
change has not yet translated to
an unequivocal decline in human
health, fears that this may happen are
increasingly credible [13]. Yet, with
a few exceptions [18,19], ecohealth
seems now to be peripheral to the
health promotion agenda. This is
reflected in the Bangkok Charter
signed at the Sixth Global Conference
on Health Promotion in 2005 [20].
The gap between health promotion
and ecohealth is especially striking
because health promotion claims to
focus on causally important factors,
even when their link to health is
lagged, complex, or theoretical [21].
Many aspects of global environmental
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37
Social Medicine in the 21st Century
change that fit this category are
worsening, but are currently largely
ignored by health promotion.
Explaining the Gap between
Health Promotion and Ecohealth
Since the Ottawa Charter was signed,
many of the social and economic
underpinnings of population health
(such as the gap between rich
and poor) have also deteriorated,
apart from those that are purely
environmental. Health promotion
has continued to champion the
issue of equity in the face of greater
international and domestic inequality
[11,22] but has largely abandoned its
stress on the linkages between adverse
global environmental change and
human health.
This separation is intriguing. All
social movements and scientific
disciplines are subject to powerful
institutional and natural forces that
shape their social, economic, political,
and environmental milieu, and it
is unremarkable that a reformist
movement such as health promotion
is not always successful in meeting
its goals. One possible factor which
may explain the disturbing separation
between health promotion and
ecohealth is the close relationship
between WHO and the health
promotion movement [23]. This
closeness may have seemed a boon for
the new discipline, promising a mutually
interactive and progressive relationship,
in which the resources of WHO would
shelter and support health promotion,
and in which health promoters could
tickle the conscience of WHO.
However, like the health promotion
movement, WHO is also subject
to larger forces. Since Alma Ata,
the rhetoric, aspiration, influence,
and—arguably—the achievement
of WHO has diminished, coincident
with a decline in many public goods
[24]. Neither WHO nor its constituent
national governments have given the
issue of adverse global environmental
change the attention it deserves,
though this might be starting to
change. The 1992 Earth Summit
received enormous fanfare yet, we
argue, achieved little. Although the
participants called for a fundamental
transformation of the global socio-
political landscape, with hindsight
it is obvious that rich populations
were unwilling to make the necessary
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38
sacrifices to protect future generations,
when “business as usual” could ensure
a short-term continuation of prosperity.
Such ideas could, of course, never
be expressed as frankly as we are
describing them here, and they still
rarely are. However, we suggest that this
“business as usual” approach affected
WHO and its constituent governments.
Sustainability was to be honoured by
promises rather than action. Gradually,
we believe, these norms came to
permeate the health promotion
movement as well as the fields of public
health and epidemiology.
We are not suggesting that the
failure of health promotion to address
the challenge of ecohealth, and
especially its dimension of global
environmental change, lies entirely
or even mainly with WHO. Rather we
emphasise the view that powerful forces
embedded and reflected in the norms,
laws, and customs of humanity have
overwhelmed the capacity of health
promotion proponents to recognise,
analyse, and address adverse global
environmental change.
Of course, these statements are
generalisations. There are some
welcome signs of change, both within
national governments and WHO [12]
and within the health promotion
movement. However, this awakening
is insufficient given the immensity of
the problems. It is of vital importance
that health promotion return to its
roots and join the forefront of this
movement.
Revitalising Health Promotion by
Integrating it with Ecohealth
Although the field of ecohealth has
only recently emerged, it has many
roots in public health and health
promotion as originally conceived.
There are obvious potential synergies
between ecohealth and health
promotion. Indeed, arguably,
ecohealth has arisen to fill the vacuum
created by health promotion’s
abandonment of ecology. Curiously,
though with some exceptions,
ecohealth seems almost as light on
its analysis of power and inequality as
health promotion now is with regard
to ecological issues. This conceptual
oversight is partly explained by the
narrow focus of most discipline-based
researchers, who are rarely trained
or encouraged to venture into other
disciplinary territories. We also suggest
1694
that a central problem in the rhetoric
of sustainability is its reticence in
calling for fundamental changes to
existing power structures.
The strategy of most sustainability
activists, especially those based in
wealthy countries, has been timid.
The 1992 Earth Summit called for a
fundamentally fairer world order, but
few Western participants took this
seriously. It was at that meeting that
US President George Bush famously
stated that the lifestyle of the average
American was not open to negotiation.
Environmentalists often call for
ecological and climatic protection
for its own sake, but rarely discuss the
really difficult personal, social, and
economic actions necessary to achieve
this. Finally, very few environmentalists
are genuinely engaged with the
struggle to reduce global poverty.
In short, just as health promotion
could learn from ecohealth, so too
could ecohealth learn from health
promotion.
We propose three concrete steps
to revitalise health promotion. The
success of these suggestions depends
on a more receptive international
milieu. However, as environmental
harm intensifies, and as the price of
oil climbs ever higher, it is plausible
that this milieu will become much
more favourable to the quest for
sustainability. The discipline and
goals of ecohealth will benefit from
an interaction with health promotion,
especially if ecohealth can use some of
the insights and strategies developed
and used by health promotion to
counter the marketing of products that
are harmful to health, such as tobacco.
First, we suggest that a re-
invigoration of the Healthy Cities
movement, with an equity focus,
is keenly needed. This movement,
sometimes traced to Toronto in 1984,
is an attempt to foster friendlier and
less environmentally damaging urban
settings, which, consequently, will be
healthier and more sustainable. There
are potential synergies in addressing
the challenges of climate change, oil
depletion, unsustainable agriculture,
the “obesogenic” environment, and
improving communication and
energy technology. (The obesogenic
environment refers to settings that
encourage excess caloric intake
through the use of fossil fuel–powered
devices rather than the expenditure
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iMedPub :: Thematic Collections :: Volume 1
of human muscular energy, coupled
with excess availability of energy-dense,
nutrient-empty foods). Such synergies
could stimulate a large market not
only for more sustainable urban areas,
but also for healthier villages and
communities.
Second, the movements of ecohealth
and health promotion combined may
have sufficient clout at a global level
to nurture a “coalition of the giving”
between the G-8 and large developing
countries in order to accelerate the
new technologies desperately needed
to slow climate change and ease the
growing energy crisis. Increased
funding, permitted by this more
favourable milieu, would allow a
large increase in the employment
of practitioners with training and
experience in these issues, trained by
improved curricula, and supported
at the local level by infrastructure
which encourages sustainability.
Similar to health impact assessments,
“sustainability impact statements”
could be mandatory for all new
developments.
Third, reducing global poverty
and inequality will dramatically slow
population growth, and thus greatly
enhance population health [15,25].
Ecohealth and health promotion
combined could advance awareness
and action concerning this issue.
Conclusion
When Katherine Mansfield wrote, “By
health I mean the power to live a full,
adult, living, breathing life in close
contact with what I love” [26], she
inadvertently captured the political,
environmental, social, and personal
context in which health promotion
finds itself in the 21st century.
The knowledge and methods
developed by health promoters to
advance social change to improve
health can and should be used to
promote the social changes needed to
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iMedPub :: Thematic collections :: Volume 1
promote ecohealth. Such promotion
will have symbiotic benefits for the
health of human populations and the
state of the physical environment. The
challenge is to ensure government
commitment to health-promoting
policies, whatever they are called, and
to advance partnerships between the
new and old health players. Health
promotion cannot abandon its pursuit
of social justice. Without sustainability,
neither health nor social justice can be
attained. �
Acknowledgments
We would like to thank Jan Ritchie, Rosmary
Erben, Susan Butler, Liam Glynn, Pieta
Laut, and participants at a workshop hosted
in Melbourne by VicHealth in July 2005,
especially Ali Barr. We also thank Ron
Labonté and an anonymous reviewer for
their helpful peer review reports.
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Social Medicine in the 21st Century
Student Forum
Why Should Medical Students Care
about Health Policy?
Rajesh Gupta
A
s the practice of medicine
becomes increasingly influenced
by political, economic, and
social policies, it is crucial that
medical students become well versed
in this expanded vision of “health
policy.” However, the current medical
curriculum at nearly all medical schools
contains very little formal education
and training in this area. In this Student
Forum, I argue for improvement in
medical education, to cultivate future
“physician/policy scientists.”
Redefining Health Policy and
the Practice of Medicine
Traditionally, the field of “health
policy” has referred to medical
policies affecting the health of
people. However, many have argued
that political, social, and economic
policies have an equal, and sometimes
greater, influence on the health of
populations [1–4]. For example,
economic sanctions in Iraq and
Cuba were intended as political
punishment for those in power, but
ultimately they led to increased infant
morbidity and mortality, respectively
[5,6]. Genocide campaigns, coupled
with their direct effects on morbidity
and mortality, tend to result in the
formation of refugee camps plagued
with disease [7,8]. In addition,
international trade agreements affect
the availability of key drugs for the
treatment of many communicable
and noncommunicable diseases
[9,10]. Pharmaceutical companies
The Student Forum is for medical students
to give their perspective on any topic related
to health or medicine
PLoS Medicine | www.plosmedicine.org
40
have, thus far, mostly focused their
efforts on the needs of the wealthy
minority rather than diseases affecting
the poor majority [11], although
there are encouraging signs that
drug companies are now becoming
interested in neglected diseases of
poverty [12]. Financial counsel and
policies from institutions such as the
World Bank and the International
Monetary Fund to resource-poor
countries, unintentionally, have been
linked to increases in disease morbidity
[1]. Health-related benefits from
technological advances may be limited
if the underlying determinants of
health are not equally addressed [13].
Political, economic, and social policies
have direct downstream consequences
on health, and, unfortunately, it is the
poor that suffer the most from this
“systemic dysfunction [with]in [our]
complex world” [14].
Political, economic, and social
policies affect health through their
direct effects on both prevention and
treatment policies—the two interlinked
foundations of modern medicine.
For example, epidemiological risk
factors are important in reference
to prevention efforts, but we must
also examine the core issues that
give rise to those risk factors (i.e., the
biosocial determinants of health). The
nonmedical determinants of health can
influence the behavior of populations
to the point of pushing selective groups
into “high-risk” categories. Treatment
is affected by both clinical knowledge
and the diagnostic/therapeutic tools
available to the physician. In turn, the
effectiveness of these tools is often
influenced by policies affecting issues
such as access to clean water and
electricity. Thus, the field of health
policy cannot be limited to only
medical policies, but must also include
these equally influential, nonmedical
determinants of health.
Women’s Health in Haiti
A brief examination of health in Haiti
further highlights how health policies
1696
DOI: 10.1371/journal.pmed.0030199.g001
In many countries, the health of
women and children is linked with their
economic and social status
(Photo: Rick Maiman, on behalf of the David
and Lucile Packard Foundation)
Funding: Rajesh Gupta is sponsored by the Paul and
Daisy Soros Foundation.
Competing Interests: The author has no competing
interests. The Paul and Daisy Soros Foundation
played no role in the preparation of this article.
Citation: Gupta R (2006) Why should medical
students care about health policy? PLoS Med 3(10):
e199. DOI: 10.1371/journal.pmed.0030199
DOI: 10.1371/journal.pmed.0030199
Copyright: © 2006 Rajesh Gupta. This is an
open-access article distributed under the terms
of the Creative Commons Attribution License,
which permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Abbreviations: ARV, antiretroviral; CSW, commercial
sex worker
Rajesh Gupta is a medical and policy student at
Stanford University School of Medicine, Stanford,
California, United States of America. E-mail: rgupta1@
stanford.edu
October 2006 | Volume 3 | Issue 10 | e199
iMedPub :: Thematic Collections :: Volume 1
must incorporate the nonmedical
determinants of health. In Haiti (and
in other countries), commercial sex
workers (CSWs) are at risk for sexually
transmitted infections (including HIV).
This epidemiological association is
built upon a socioeconomic principle
that many CSWs do not “choose” to
become CSWs but rather become
CSWs out of necessity for survival.
Once commercial farmers, these
individuals were displaced from their
land ultimately as a result of political
and economic policies, with no option
of an alternative source of income.
Structural adjustment programs are
a good example of a policy that has
led to displacement—these programs
involve economic policies such as
currency devaluation and trade
liberalization, which countries must
follow in order to qualify for World
Bank and International Monetary Fund
loans. Thus, as a result of the political,
economic, and social history of Haiti,
sexual relations as a way of economic
survival remains the only choice for
many women in the country [15].
The role of the physician
needs to be expanded to
include the notion of the
policy scientist.
An effective strategy to address
HIV in Haiti will require a synergistic
combination of prevention and
treatment. Prevention efforts should
not only focus on condom provision but
also target those political and economic
policies placing populations at risk for
becoming CSWs. As a cross-cultural
example, an adolescent “street girl”
in Rwanda, working as a CSW, stated
the following in one interview: “Of
course I know we should use condoms.
But let me tell you this. I get paid the
equivalent of US 25¢ a night if I ask the
man to use a condom and 50¢ a night if
we do not use one. My family is starving
at home. What would you do?” (J. Furin,
personal communication).
For those CSWs already infected
with HIV and progressing to AIDS,
treatment with antiretrovirals (ARVs)
has only recently become a viable
option. However, the Trade-Related
Aspects of Intellectual Property Rights
agreement (an international trade
law adopted by the World Trade
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iMedPub :: Thematic collections :: Volume 1
Organization in 1994 that outlines rules
and regulations—such as patents and
copyrights—for protecting intellectual
property) may significantly affect
Haiti’s (and other poor countries’)
access to many high-quality, affordable,
generic ARVs, as producers in other
countries may have to cease production
and exportation (http:⁄⁄www.wto.org/
english/tratop_e/trips_e/trips_e.htm).
Lack of access to ARVs will limit the
ways physicians can treat their patients.
Thus, prevention and treatment can
only be optimal if policies are geared
toward truly empowering individuals to
use condoms, and if access to ARVs is
not impaired or limited.
Redefining Medical School
Training and the Role of the
Physician
Ultimately, physicians face a conflict
between medical knowledge and the
practice of medicine. To address this
conflict, and to truly place the needs
of patients first, physicians need to
be able to put into practice their best
understanding of prevention and
treatment. This inherently implies
being involved in the political,
economic, social, and medical affairs
affecting the field of health policy.
However, as medical trainees, we
focus primarily on clinical knowledge.
Once we gain this knowledge, we
are then thrust into the practice of
medicine. Some individuals ultimately
shift toward health policy–oriented
careers, with most of that subset
focusing on medical policies. What is
clearly lacking in this process is the focus
on health policy as a career from the
outset. Thus, the role of the physician
needs to be expanded to include the
notion of the policy scientist.
The idea of redefining the role
of the physician is not novel, and
is exemplified by the concepts of
the physician/research scientist
and the physician/public health
specialist. Such individuals gain
training and experience early in their
medical school curriculum via joint-
degree programs and integration
of these disciplines into core class
work. Significant training and job
opportunities (government, public-
sector, and private-sector) are provided,
and within many programs exist to
foster clinical research or public
health as careers. Residency programs,
although still extremely oriented
1697
Social Medicine in the 21st Century
toward clinical practice, include
tracks designed for clinical research
and public health (http:⁄⁄www.amsa.
org/global/ih/resprograms.cfm;
http:⁄⁄rwjcsp.stanford.edu) [16].
What is needed now is the physician/
policy scientist. Medical schools should
structure their curriculum to expose
all students to the various aspects of
health policy. This would include not
only focusing on the medical decision-
making process but also on examining
how political, economic, and social
policies influence health. Formally, the
standard medical curriculum should
include a specific course devoted to this
issue. Schools should offer seminars
and training opportunities to further
encourage students interested in
health policy as a career. Formalized
joint-degree programs and internship
opportunities at political, economic,
social, and medical policy institutions
should be developed. Residency
programs could be designed to
combine clinical training with health
policy studies. Finally, specific careers
in health policy should be supported
by governments, the public sector,
and the private sector. Emphasizing
health policy from the beginning of the
medical education process will properly
equip trainees with the skills to be
effective in the health policy arena.
Conclusion
As trainees, we can work hard
by narrowly focusing on clinical
training. As many of us know and
are experiencing, shaping and
defining our clinical knowledge is
a formidable task that sometimes
appears insurmountable. But while
clinical knowledge may have been
weighted as the dictating force in the
practice of medicine in the past, it is
no longer the dictating force, nor will
it be the force of the future. Political,
economic, social, and medical policies
of transnational agencies, governments,
and the private sector are equal (and
sometimes greater) guiding forces in
the practice of medicine. We must
involve ourselves in these determinants
of health as early as possible. And to
properly do so, we must support the
early development of physicians who
delve deeply into these issues.
Trainees should care about health
policy because we have chosen a career
that requires us to serve our patients,
and we have committed ourselves to
October 2006 | Volume 3 | Issue 10 | e199
41
Social Medicine in the 21st Century
providing the best standard of care
to them. The integrity and the future
of our profession now depend upon
our influence in the expanding world
of health policy, and not solely upon
on our clinical knowledge. We will
be judged by our actions during this
critical stage of health in the world. If
we do not act now, we may indeed fail
our patients in the future. �
Acknowledgments
I would like to thank Peter Hotez, Jennifer
Furin, and Paul Wise for their insightful
comments.
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saving drugs now. Available: http:⁄⁄www.
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091E8829E29F80E6&component=toolkit.
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September 2006.
11. Trouiller P, Olliaro P, Torreele E, Orbinski J,
Laing R, et al. (2002) Drug development for
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12. Moran M (2005) A breakthrough in R&D for
neglected diseases: New ways to get the drugs
we need. PLoS Med 2: e302. DOI: 10.1371/
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13. Birn AE (2005) Gates’ grandest challenge:
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15. Farmer PE (1993) AIDS and accusation:
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16. Farmer PE, Furin JJ, Katz JT (2004) Global
health equity. Lancet 363:1832.
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iMedPub :: Thematic Collections :: Volume 1
Social Medicine in the 21st Century
PLoS MEDICINE
An Ethnographic Study of the Social Context
of Migrant Health in the United States
Seth M. Holmes1,2
1 Department of Anthropology, History, and Social Medicine, School of Medicine, University of California San Francisco, San Francisco, California, United States of America,
2 Department of Anthropology, University of California, Berkeley, California, United States of America
Funding: This research was funded
by the UCSF Medical Scientist ABSTRACT
Training Program, the University of
California Institute for Mexico and
Background
the United States, the UCSF Center
for Reproductive Health Research
Migrant workers in the United States have extremely poor health. This paper aims to identify
and Policy, the UCSF Graduate
Division, and the Mustard Seed ways in which the social context of migrant farm workers affects their health and health care.
Foundation. The funders had no role
in study design, data collection and
analysis, decision to publish, or Methods and Findings
preparation of the manuscript.
Competing Interests: The author
This qualitative study employs participant observation and interviews on farms and in clinics
was one of the guest editors of the throughout 15 months of migration with a group of indigenous Triqui Mexicans in the western
social medicine theme issue in which US and Mexico. Study participants include more than 130 farm workers and 30 clinicians. Data
this article appears; however, he
played no part in the review of this are analyzed utilizing grounded theory, accompanied by theories of structural violence,
manuscript. No other competing symbolic violence, and the clinical gaze. The study reveals that farm working and housing
interests exist. conditions are organized according to ethnicity and citizenship. This hierarchy determines
Academic Editor: Paramjit Gill, health disparities, with undocumented indigenous Mexicans having the worst health. Yet, each
University of Birmingham, United group is understood to deserve its place in the hierarchy, migrant farm workers often being
Kingdom
blamed for their own sicknesses.
Citation: Holmes SM (2006) An
ethnographic study of the social
context of migrant health in the Conclusions
United States. PLoS Med 3(10): e448.
DOI: 10.1371/journal.pmed.0030448 Structural racism and anti-immigrant practices determine the poor working conditions, living
conditions, and health of migrant workers. Subtle racism serves to reduce awareness of this
Received: April 10, 2006
Accepted: September 15, 2006
social context for all involved, including clinicians. The paper concludes with strategies toward
Published: October 24, 2006 improving migrant health in four areas: health disparities research, clinical interactions with
migrant laborers, medical education, and policy making.
DOI:
10.1371/journal.pmed.0030448
Copyright: � 2006 Seth M. Holmes. The Editors’ Summary of this article follows the references.
This is an open-access article
distributed under the terms of the
Creative Commons Attribution
License, which permits unrestricted
use, distribution, and reproduction
in any medium, provided the
original author and source are
credited.
E-mail: seth.holmes@ucsf.edu
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Social Medicine in the 21st Century
Introduction
Labor migration is a significant phenomenon throughout
the world, with high economic, political, medical, and human
stakes. The UN Population Division estimates that there are
175 million migrants in the world, 46% more than a decade
ago [1]. Worldwide, the majority of migrant laborers are of a
minority ethnicity in the country in which they work, most
live in poverty and suffer poor health, and significant
numbers are undocumented.
What is often framed as ‘‘the migrant problem’’ [2,3] in the
US has received great political, journalistic, and medical
attention in the past few years. Recent research estimates that
there are 293 million residents in the US, 36 million of whom
are foreign-born and 10.3 million of whom are unauthorized
[4,5]. According to the 2000 US Census, there were 9.2 million
Mexican-born US residents, including 2.3 million naturalized
US citizens, 2.1 authorized immigrants, and 4.8 undocu-
mented immigrants [6]. It is estimated that there are 1 million
indigenous Mexicans from the state of Oaxaca in the US,
mostly Mixtec, Zapotec, and Triqui people [7]. Approximately
95% of the agricultural workers in the US were born in
Mexico [8] and 52% are undocumented [9]. The average age
of agricultural workers is 29 years, with very few older than 60
years [10,11] and the vast majority of these individuals and
families live below the poverty line [9,11,12].
Most researchers agree that inequalities in the global
market make up the primary driving force of labor migration
patterns (e.g., [12]). Mexico’s average minimum wage is
US$4.12 per day and varies by region, with the lowest
minimum wage in southern Mexico, from which come most
indigenous Mexican migrants to the US. In contrast, the US
federal minimum wage is $5.15 per hour, while it is $6.75 in
California and $7.15 in Washington state. Regardless of the
lack of parity in economic power between Mexico and the US,
the North American Free Trade Agreement (NAFTA)
deregulated all agricultural trade in 2003 except for corn
and dairy products, which will be unprotected in 2008 [13].
The Mexican government complains that since NAFTA’s
initial implementation in 1994, the US has raised farm
subsidies by 300% [13]. Throughout the 1990s, Mexico, on the
other hand, has reduced financial supports for corn
producers, millions of whom are indigenous peasants for
whom corn cultivation is the primary source of income [13].
Various Mexican organizations are pressing the Mexican
government to renegotiate NAFTA so that more farm owners
and workers will not be forced by poverty to emigrate for
wage labor [13]. In various rural parts of Mexico, rebel groups
have risen up, some armed and some not, to demand a change
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Social Context of Migrant Health
to the economic marginalization and geographic displace-
ment justified by the rhetoric of ‘‘development’’ and ‘‘free
trade’’ (e.g., [14,15]).
Mexican laborers, often called ‘‘illegal aliens’’ in the US, are
often victims of negative prejudice and violence, including
murders by civilian vigilante squads, so-called ‘‘beaner raids’’
by off-duty Marines, BB gun shootings by white American
youth, deportations of sick workers by company owners
under the guise of taking them to the hospital, the paying of
entire farm labor crews in wine and illicit drugs, and pesticide
poisoning by company crop dusters (for specific examples,
see [2,4,16–19]). They are blamed for everything from
unemployment rates to state budget deficits [20] in efforts
to pass bills (such as California’s ‘‘Save Our State’’ initiative in
the 1990s, a similar 2005 initiative in Arizona, and various US
Congress bills in 2006) that bar undocumented immigrants
from public services, including health care. In such political
debates about immigrants, it is rarely acknowledged that
these laborers are actively recruited by US employers to take
jobs that US citizens most often are unwilling to fill, and that
the laborers pay sales taxes as well as the federal, state, and
local taxes taken out of their paychecks [5,21–24].
In 1994, the US Border Patrol launched Operation Gate-
keeper to deter migrants from crossing the southern border
by utilizing more agents, more barriers, and more technology.
According to critics, this has simply moved the location of
crossings to more deadly areas that are less visible to border
area residents [25]. Already by August, 2005 had become the
deadliest year on record, with 385 recorded border-crossing
deaths, surpassing the previous record of 383 set in 2000 [25].
In addition, undocumented immigrants report that coyote
(unauthorized border-crossing guide from Mexico to the US)
fees have risen to approximately US$2,000. Nonetheless, the
‘‘new nativism’’ [26,27] active in the US calls for further
militarization of the border. During the summer of 2005,
more than 1,000 private volunteer militiamen, calling
themselves ‘‘Minutemen,’’ began patrolling 23 miles of the
Arizona border [28]. California governor Arnold Schwarze-
negger commended the Minutemen for doing a ‘‘terrific job’’
[25], while others consider it dangerous and illegal vigilantism
[29].
Previous medical and public health research shows that
migrant farm workers have significantly worse health statis-
tics than other populations. Such statistics are somewhat
unreliable, due to the difficulty of studying a largely invisible
population. Estimates of the migrant farm laborer population
in the US range from 750,000 to 12 million, though most
approach 10 million [11]. In addition, most morbidity and
mortality data are skewed lower due to undocumented
workers’ fear of reporting health problems, poor enforce-
ment of labor and health policies in agriculture, as well as the
fact that many Latin American migrant laborers return to
their home countries as they age or become disabled, which
leads to a ‘‘healthy worker bias’’ [30]. Regardless of these
issues, previous research shows that health disparities related
to migrant farm workers fall into the areas of ethnicity,
citizenship, and social class. According to recent research,
Latino children have twice the death and hospitalization rates
from pedestrian injury than do white children in the US, and
Latino adults have lower rates of preventive medicine
screening [8]. A recent Institute of Medicine report indicates
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that all ethnic minorities receive definitively lower-quality
health care in the US [31].
In addition, several studies show that the health status of
immigrants declines with increasing time in the US. Such
health markers as obesity, serum cholesterol, tobacco smok-
ing, alcohol use, illicit drug use, mental illness, suicide, and
death by homicide increase between first- and second-
generation Mexican immigrants in the US [8,30]. The nutri-
tional value of immigrants’ diets also decreases significantly
during the first year in the US [30]. Undocumented status
further increases allostatic load due to, among other things,
crossing the ‘‘most violent border in the world between two
countries not at war with one another’’ as well as ongoing fear
of immigration and other authorities [7].
Beyond ethnicity and immigration status, the class position
of Mexican migrant farm workers is also associated with their
decreased health status. Agricultural work has a high fatality
rate, with 21.3 deaths per 100,000 workers per year,
compared with the overall worker rate of 3.9 [10]. In addition,
agricultural workers have increased rates of nonfatal injuries,
chronic pain, heart disease, many cancers, and chronic
symptoms associated with pesticide exposure [10]. There is
also an increased risk of stillbirth and of congenital birth
defects in children born near farms [10,32]. To further specify
class position, migrant and seasonal farm workers suffer the
poorest health status within the agriculture industry. Migrant
and seasonal workers have increased rates of many chronic
conditions, such as HIV infection, malnutrition, anemia,
hypertension, diabetes, chronic dermatitis, fatigue, head-
aches, sleep disturbances, anxiety, memory problems, steri-
lity, blood disorders, dental problems, and abnormalities in
liver and kidney function [11]. This population has an
increased incidence of acute sicknesses such as urinary tract
and kidney infections, lung infections, heat stroke, anthrax,
ascariasis, encephalitis, leptospirosis, rabies, salmonellosis,
tetanus, and coccidioidomycosis [32,33]. Tuberculosis preva-
lence is six times more common in this population than in
the general US population [30]. Finally, children of migrant
farm workers show high rates of malnutrition, vision
problems, dental problems, anemia, and excess blood lead
levels [32].
Despite their worse health status and a correlated need for
more health and social services, migrant farm workers face
many obstacles to access such services. Farm workers are
entirely or partially excluded from worker’s compensation
benefits in all but 15 states [33]. The Fair Labor Standards Act
of 1938 guaranteed minimum wage, time-and-a-half wage for
overtime, and restricted child labor, but this did not apply to
farm workers. Amendments in 1966 ostensibly extended
eligibility to farm workers, but disqualified the majority by
excluding such categories of workers as those on small farms
and those paid piece wages. The majority of farm workers are
also excluded by the Social Security Act and its later
amendments from benefits related to unemployment. In
addition, even though migrant housing conditions are
addressed in Housing Act of 1949 and Occupational Safety
and Health Act of 1970, living conditions in labor camps
continue to be appalling. Finally, farm workers were denied
the right to collective bargaining under Wagner Act of 1935,
which has changed in only a very few states. Furthermore,
even existing provisions for farm workers are regularly
violated.
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Social Context of Migrant Health
Only 5% of migrant farm workers have health insurance,
contrasted with 84% of US residents overall [30,34]. Migrant
laborers are less likely than other groups to obtain preventive
care, with 27% never receiving a routine physical exam, 25%
never having a dental check-up, and 43% never receiving an
eye exam [11]. Although there is a federal Migrant Health
Program funding migrant clinics, it is estimated that this
program serves only 13% of the intended population [11].
Finally, undocumented status and the inter-state migratory
nature of their lives means that less than one-third of migrant
women qualify for Medicaid, despite living well below the
poverty line [31]. Many migrant workers in the US go through
many hardships to return to Mexico for health care [31], and
they cite economic, cultural, and linguistic reasons for this
choice.
The social science research cited above indicates that
Mexican migrant workers in the US are the focus of many
forms of prejudice and violence. The health research brings
to light significant health disparities related to undocu-
mented Mexican migrant workers, specifically along the lines
of ethnicity, citizenship, and social class. However, it is not yet
understood how prejudice—specifically, institutional racism
and anti-immigrant prejudice—might influence such health
disparities. There has been very little research related to the
ethnic make-up of migrant workers in general, especially with
relation to indigenous Mexican migrants. This study aims to
fill these gaps by identifying ways in which the social context
of indigenous, undocumented migrant farm workers’ affects
their health status, well-being, and medical care.
This research investigates the social forces in the web of
causation of ill health among migrant workers in the US by
reporting in-depth qualitative research data and analysis
from an extended ethnographic case study with undocu-
mented, indigenous Mexican migrant laborers in the western
US and Mexico. In addition, the investigator analyzed ways in
which the social origins of sickness are obscured by an
individualizing medical gaze as well as societal normalizing
notions of essential ethnic difference.
Methods
In order to address these research questions, this study
employs the classic anthropological technique of participant
observation [35], supplemented by tape-recorded, semi-
structured, in-depth interviews in farms as well as in clinics
and hospitals frequented by migrant farm workers. Because
the study question relates to subtle forms of prejudice,
assumption, and meaning that are often difficult to assess
with quantitative methods or interviews alone, this study
makes use of the above standard qualitative research methods
utilized over the long term. Anthropological methods, such as
those described below in the case of migrant health, are
critical to investigating social disparities in health in vivo
without simplifying the complex reality in which they are
embedded. Specifically, participant observation involves
long-term immersion in a particular social and cultural
context. The researcher participates in everyday life during
an extended period of time, while observing interactions and
listening to conversations in order to identify significant
practices, political economic forces, and cultural concepts.
The investigator regularly records events and conversations
in detailed field notes. While this methodology may include
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Social Context of Migrant Health Social Context of Migrant Health

Table 1. Primary Study Participants

Participants Location Description

130 farm employees Washington state 20 white and Asian-American US citizens

20 Latino US citizens
20 mestizo Mexican citizens
20 Mixteco Mexican citizens
50 Triqui Mexican citizens
30 clinicians Washington state, California, and Oaxaca, Mexico 18 physicians
10 nurses
2 dentists
22 border residents Arizona 15 border activists
5 border patrol officers
2 vigilantes

‘‘Mestizo’’ refers to the ethnic group that is often called ‘‘regular Mexicans,’’ with mixed indigenous Mexican and Spanish ancestry. Mixteco people are an indigenous group from the
Mexican state of Oaxaca who have their own language. Mixteco people have been migrating to the US for well over three decades, and most speak Spanish fluently. Triqui people are also
an indigenous group from the Mexican state of Oaxaca who have their own language. Triqui people began to migrate to the US within the past 10 to 15 years, and most of those younger
than 40 years speak Spanish, while the older generation is largely monolingual in Triqui.
DOI: 10.1371/journal.pmed.0030448.t001

data from interviews and surveys, it differs significantly from
many other methods of research in that it is performed and
analyzed within the situational knowledge provided by long-
term participation, observation, and relationship.
Tape-recorded interviews were conducted with five to ten
members of each of the groups of primary study participants
outlined in Table 1, except for vigilante members and Border
Patrol officers (who refused to be recorded but agreed to be
interviewed and for notes to be taken). The researcher is
fluent in English and Spanish and speaks and understands
limited Triqui Alto. Interviews were conducted by the
investigator in English or Spanish when either of these was
fluently spoken and understood by the participant. Given the
extreme lack of Triqui translators, the investigator utilized
the translation help of other primary study participants in
order to interview the few participants who spoke only Triqui
Alto.
The participant sample was selected in order to balance the
need for the organic development of relationships within
participant observation and the desire for a representative
sample. The selection of participants on the Tanaka Farm will
serve as an example. First, this farm was selected for the study
because it contains populations that represent the ethnic and
citizenship make-up of much of the agricultural workforce in
the US [36–38], thus increasing the generalizability of the
findings. Second, the investigator was able to build rapport
with the farm management due to his prior acquaintance
with several area residents.. The sample of participants was
selected to represent each of the primary labor, ethnicity, and
citizenship positions on the farm. Within each of these
positions, the individuals whom the investigator was able to
observe in multiple meetings were consented and included as
study participants. The general principles of choosing
participants from each of the primary ethnicity and citizen-
ship categories whom the investigator was then able to
observe in multiple temporal and social contexts were
repeated throughout the multi-sited field research.
The research was conducted along the lines of ‘‘follow the
people’’ multi-sited fieldwork [39] full-time for 15 months
throughout a migration circuit with a group of indigenous
Triqui Mexicans starting in an agricultural community in
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Washington state, moving to central California, next moving
to their hometown in the mountains of Oaxaca, migrating
across the border into Arizona, and finally returning to
Washington state (see Figure 1). Six months were spent living
in a migrant camp, picking berries, as well as observing and
interviewing in migrant clinics and hospitals in Washington
state. Four months were spent living with Triqui migrant
workers in a slum apartment, pruning vineyards, as well as
observing and interviewing in migrant clinics and hospitals in
central California. Four months were spent living with a
family, planting and harvesting corn, and observing and
interviewing staff in the local medical clinic in a village in the
mountains of Oaxaca. One month was spent hiking through
the desert, meeting with and interviewing Border Patrol
agents, local residents, activists, and vigilante members in
Arizona (Figures 1 and 2).
More than 3,000 pages of field notes from observations and
experiences, oral histories and transcribed interviews, as well
as photographs, surveys, clinical medical charts, newspaper
and other media clips comprise the data analyzed in this
study. In this project, data were analyzed according to the
primary foci of living and working conditions, ethnic
relations, immigration status, health status, and medical care,
as well as prejudices and stereotypes.
A general overview of the initial stages of data analysis is
provided by the model of grounded theory [40], which can be
particularly useful in participant-observation studies. The
most intensive phase in each research site can be understood
as the scientific method of hypothesis testing via observation
done in an iterative process over the longue durée.
Frequently during fieldwork, the primary investigator system-
atically analyzed and coded field notes and interviews in
order to test the primary hypotheses of the study and develop
more precise questions for the next rounds of interviews.
This method allows for ongoing contextual development of
more and more precise hypothesis testing. Fieldwork notes
and transcribed interviews were coded utilizing Atlas.ti
software. The analysis process includes coding of data
through cycles of increasing precision. The data with a single
code were compiled and analyzed for their characteristics
and meanings. Then, data were coded axially, focusing on
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Figure 1. Summary of Field Work
DOI: 10.1371/journal.pmed.0030448.g001
connections among categories. Data analysis also entailed a
research verification technique called triangulation. This
involves collecting several kinds of data from the same
sources over time as well as from independent sources in
order to verify the validity of research findings and to
diminish distortion due to self-report alone.
This analysis was performed with cross-checking by 15
scholars in the fields of cultural anthropology, medical
anthropology, and medical sociology. During the analysis
and writing phases of the study, meetings were scheduled with
seven senior scholars individually and as a group with the
eight researchers in the Violence in the Americas Writing
Group (see Acknowledgements section) to discuss developing
analyses of field notes and interview transcriptions that had
been sent to them earlier. Consensus regarding analysis was
achieved through discussion of the analyses—including
themes—arrived at separately by each of the individuals
mentioned above. In addition, several study participants were
invited to discuss the conclusions of this project. The
invitation of critiques and analyses by study participants is
an increasingly common practice in cultural and medical
anthropology that works to increase the validity of findings by
minimizing the a priori bias of the outsider. The investigator,
however, holds the final responsibility for the conclusions
presented in this article.
The theoretical framework of this study falls within the
subfield of critically interpretive medical anthropology
[41,42]. This subfield of medical anthropology seeks to remain
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close to the origins of cultural and medical anthropology in
the US by focusing on the interpretation of local meanings
and experiences while linking these interpretations with an
analysis of larger social, political, and economic forces. This
framework is especially helpful in answering research ques-
tions that attempt to understand the inter-relationships
between the micro illness experiences of individuals and
the macro social and cultural forces influencing those
experiences. The specific concepts within this field that will
be employed in this paper will be described in the Results and
Discussion sections. This study was approved by the Commit-
tee on Human Research at the University of California San
Francisco. The identity and research aims of the investigator
were made clear throughout the fieldwork. Names and
identities of study participants have been changed without
altering the nature of the data. Consent for photographs was
obtained from all participants in the manner suggested by the
Committee on Human Research at the University of
California San Francisco.
Results
Ethnicity and Citizenship Hierarchies in Farm Labor
The Tanaka Farm, in which several months of fieldwork
were performed in Washington state, serves as an extended
case study in order to understand the effects of prejudice on
the health of farm workers. The first, general phase of
fieldwork yielded the contextual data [43] that will be
presented in this section.
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Social Medicine in the 21st Century
Figure 2. Map of Migration Route
This map shows the route of migration field research followed by the
anthropologist, from the Skagit Valley of Washington state to the central
Valley of California, the mountains of Oaxaca, Mexico, the Arizona
borderlands, and then back to central California and Washington state.
(Illustration: Natalie Davis)
DOI: 10.1371/journal.pmed.0030448.g002
The Tanaka Farm is a relatively small family farm, with
executives focused on growing the business for future
generations and keeping agricultural land in Washington
state. This farm employs more than 400 workers at the peak
of picking season and approximately 50 during the rest of the
year. On a practical and explicit level, employees on the farm
plant, harvest, and process berries, supporting the published
goals of the company. On another level, the structure of farm
work inheres a hierarchy reflecting the inequalities in US
society at large—specifically, those organized around eth-
nicity and citizenship. Duties, privileges, as well as exposures
to weather, pesticides, and other dangers differ from the top
to the bottom of this hierarchy (see Figure 3).
The broad contours of the structure of labor on the Tanaka
Farm follow. The top executives work seated behind desks in
private offices and live in their own houses, some with
panoramic views. All are white or Asian-American. The
administrative assistants who work seated at desks in public
spaces as well as the teenagers who stand outside checking
weights and time cards live in relatively simple houses near the
farm. They are almost entirely white, with a few US Latinos.
The other workers live in one of three labor camps. Each labor
camp is made up of shacks, the average of which is 10 feet by
15 feet with one or two mattresses, one small refrigerator, two
camping-style gas stoves, one table with a bench, and a small
sink with one hose each of hot and cold water. The first camp
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Social Medicine in the 21st Century
Social Context of Migrant Health Social Context of Migrant Health
holds almost 50 people and is located 100 feet from the road.
Each shack has heating, insulation, and wooden roofs under
the tin metal sheets. Here live the field bosses who walk outside
supervising the pickers, almost entirely Latino US citizens,
along with one Mixteco from the state of Oaxaca in Mexico.
The second camp holds approximately 100 people and is
located a few hundred feet from the road. Most units here
have a wooden roof under the tin metal sheets, though none
have heating or insulation. Here live primarily apple and
raspberry pickers, as well as several strawberry pickers. The
residents of this camp are made up almost entirely of
undocumented mestizo Mexicans, along with several Mixtecos
and a few Triquis, also from Oaxaca. The third camp, located
several miles from the farm headquarters down a back road,
holds 250 people. The shacks here have tin roofs without
wood, heating, or insulation. Here live the majority of the
strawberry pickers, primarily Triqui indigenous Mexicans, as
well as several Mixtecos and two indigenous people from the
Mexican state of Chiapas (Figure 4).
The ethnic and citizenship hierarchy seen here—white and
Asian-American US citizen, Latino US citizen or resident,
undocumented mestizo Mexican, and undocumented indig-
enous Mexican—is common in North American farming [36–
38,44]. The relative status of Triqui people below Mixtecos
can be understood as a difference in perceived indigeneity.
Many farm workers and managers indicated in interviews that
they believed that the Triqui were more ‘‘purely indigenous,’’
‘‘more simple,’’ and ‘‘less civilized’’ than other groups.
In many ways—ethnicity, citizenship, social class—the
investigator did not take the appropriate position in the
labor hierarchy. In order to answer the research questions,
the anthropologist placed himself in the housing and
occupations of the Triqui undocumented immigrants. This,
then, added experiential data beyond the observations and
interviews. The farm executives treated the investigator as
someone out of place, giving him special permission to keep
Figure 3. Labor Hierarchy on the Tanaka Farm
his job and shack even though he was never able to pick the DOI: 10.1371/journal.pmed.0030448.g003
minimum weight. They joked and talked with him as he
picked, treating him like a respected form of entertainment.
On the other hand, the Oaxacan berry pickers treated him down the ladder from Euro-American to indigenous Mexican Strawberry pickers must bring in 50 pounds of de-leafed
with a mixture of respect and suspicion. Many wondered why one is positioned, the less control over time one has, the more berries every hour. Otherwise, they will be fired and kicked
there was a gabacho chakuh (bald, white American) picking degrading treatment by supervisors one receives, the more out of the camp. In order to meet this minimum weight
berries. Many suggested that the investigator might be a spy physically taxing one’s work is, and the more exposed one’s requirement, they take few or no breaks from 5:00 A.M. until
for the police, the border patrol, or the US government. body is to weather and pesticides. As enumerated in the the afternoon or evening when that particular field is
Others stated that he might be a drug smuggler looking for a Introduction section, disparities in many areas of health in the completed. Often, they are reprimanded nonetheless and
good cover (Figure 5). US fall along this hierarchy of ethnicity, labor, and citizenship. called perros (dogs), burros (burros), Oaxacos (a derogatory term
After sharing a meal in the labor camp, a Triqui man The Triqui people inhabit the bottom rung of the pecking for ‘‘Oaxacan’’), or indios estupidos (stupid Indians). Many do
named Samuel made a statement representative of many order on the Tanaka Farm. The relationship between their not eat or drink anything before work so that they do not have
interactions between the berry pickers and the investigator. position in the farm labor structure and their health to take time to use the outhouse. They work as hard and fast as
He mused, ‘‘Right now you and I are the same; we are poor. constitutes a representative case in point. As described above, they can, picking and running with their buckets of berries to
But, later you will be rich and live in a luxury house (casa de the Triqui berry pickers live in the coldest, wettest shacks. the white teen checkers. Meanwhile, the white teenagers stand
lujo).’’ The anthropologist explained that he did not want a They hold the most stressful, humiliating, as well as physically to the side, talking and laughing, sometimes throwing berries
luxury house, but rather a small, simple house. Samuel strenuous and dangerous jobs picking strawberries. Occupy- at each other in jest, and occasionally hurling berries at Triqui
clarified, ‘‘But you will have a bathroom on the inside, right?’’ ing the bottom of the labor hierarchy, Triqui strawberry pickers with statements made at high volume such as, ‘‘Eat it!,’’
pickers bear an unequal share of health problems, commonly or simply, ‘‘No!’’(Figure 6). One of the first Triqui pickers the
Health Disparities and Health Care experiencing back and knee degeneration, diabetes, dental investigator came to know, named Abelino, explained the
The first question in the hypothesis-testing phase of problems, and often giving birth prematurely to low–birth experience of picking in the following way (Figure 7):
research follows: How does the above ethnic and citizenship weight infants (see, e.g., [7,9,10,11,30,32,33]). Four common
hierarchy in agricultural labor relate to health status and health problems among Triqui pickers that will be explored ‘‘. . . You pick with both hands, bent over, kneeling like
health care? With time and observation, it became clear that further below include occupational injury and pain, somati- this [demonstrating with both knees fully bent and his
the complex of ethnicity, citizenship, labor, and housing maps zation, substance abuse, and trauma. Triqui experiences of head bowed forward]. Your back hurts; you get knee
onto a hierarchy of health status and suffering. The further health care will also be examined. pains and pain here [touching his hip]. Well, when it
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Figure 4. Labor Camp on the Tanaka Farm
Each of the Tanaka Farm’s labor camp units, called ‘‘cabins’’ by farm executives, is split in half, with each side housing one family.
DOI: 10.1371/journal.pmed.0030448.g004
Figure 5. The Anthropologist with Triqui Migrant Workers in Washington State
The anthropologist with Triqui migrant workers in Washington state.
DOI: 10.1371/journal.pmed.0030448.g005
rains, you get pretty mad and—and—you have to keep
picking. They don’t give lunch breaks. You have to work
every day like that . . . You suffer a lot in work.’’
During the fieldwork, the anthropologist picked once or
twice a week, providing valuable experiential data for analysis
[45]. After each day of picking, the investigator experienced
gastritis, headaches, as well as knee, back, and hip pain for
two to three days afterward. Triqui strawberry pickers, on the
other hand, worked seven days a week, rain or shine, until the
last strawberry was processed. In order to more fully explore
the effects of social context, including prejudice, on the
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health and health care of Triqui people, three individual
cases will be highlighted.
Abelino: Work Injury and Chronic Pain
Due to the long hours and difficult conditions of strawberry
picking, many workers complained of back, hip, and knee
pain. In order to further understand the experiences and
meanings of such common pain, one extended case study will
be presented here. Abelino, a Triqui father of four who was
mentioned above and lived near the anthropologist in the
labor camp, came to the US across the deadly desert border to
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Figure 6. Teenage Checker Punches the Weight of Berries Brought in by a Picker
A teenage checker punches the weight of berries brought in by a picker.
DOI: 10.1371/journal.pmed.0030448.g006
work long enough to save approximately US$10,000 in order
to return to his hometown in the mountains of Oaxaca and
build a concrete house for himself and his extended family. He
summarized the need to migrate one day, stating:
‘‘In Oaxaca, there’s no work for us. There’s no work.
There’s nothing. When there is no money, you don’t
know what to do. And shoes; you can’t get any. A shoe
like this [pointing to his tennis shoes] cost about 300
Mexican pesos. Per day, they’re paying 30 or 40 pesos.
You have to work two weeks to buy a pair of shoes . . . We
have to migrate to survive. And we have to cross the
Figure 7. Triqui People Bent Over Picking Strawberries in Washington State
Triqui laborers picking strawberries on the Tanaka Farm in Washington state.
DOI: 10.1371/journal.pmed.0030448.g007
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border, suffering and—and—and walk two days and two
nights, sometimes five days to get here and work and
support the American people. Because they don’t work
like we do. They just get rich working a job—a light job—
like the shops, the offices, but they don’t work in the
field. But we Mexicans from many Mexican states come
here to maintain our families. We want to get permission
to enter just for a harvest season and then return to our
country . . . And we come here and it is a little better, but
you still suffer in the work . . . Coming here with the
family and moving around to different places, we suffer.
And the children miss their classes . . . and don’t learn
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well. Because of this, we want to stay here only for a
season with [legal documents] and let the children study
in Mexico. Do we have to migrate to survive? Yes, we do.’’
One Saturday, Abelino experienced acute, sharp pain in his
knee when he turned while picking strawberries in the row
next to where his wife and oldest daughter were also picking.
After continuing his work in vain hopes that the pain would
go away, he told his field boss about the incident. The boss
simply said, ‘‘OK,’’ and drove away without any follow-up.
Unsure of what to do, Abelino attempted to keep picking.
Two days later, work was abruptly canceled without
explanation from the supervisors, and Abelino went to a
local urgent care clinic. During the course of the next year, he
ended up seeing four doctors and a physical therapist, usually
without a translator. During this time, he limped around
camp, taking care of his kids while his wife and oldest
daughter continued picking in the fields.
The urgent-care doctor he first saw explained that Abelino
should not work, but should rest and let his knee recover. The
occupational health doctor he saw the following week said
Abelino could work but without bending, walking, or
prolonged standing. Abelino went to the farm office to ask
for lighter work of this sort. The bilingual receptionist told
him in Spanish in a frustrated tone, ‘‘No, because no,’’ and
did not let him talk with anyone else. After a few weeks, the
occupational health doctor passed Abelino to a reluctant
physiatrist who told Abelino that he must work hard picking
strawberries in order to make his knee better. She told
Abelino that he had been picking incorrectly and hurt his
knee because he ‘‘didn’t know how to bend over correctly.’’
Once Abelino had recovered, this doctor explained to the
researcher that Abelino no longer felt pain, not because he
got better, but because the picking season was over and he
could no longer apply for worker’s compensation. Two years
later, Abelino still tells the anthropologist that he has
occasional knee pain and that ‘‘the doctors don’t know
anything (no saben nada).’’ Knee and back pain continue to be
the most common health complaints among pickers on the
Tanaka Farm (see also [10]).
Crescencio: Somatization and Substance Use
Crescencio, another Triqui father who lived in the same
camp, approached the investigator later in the summer and
asked for medicine for headaches. He explained that every
time a crew boss called him names on the job, made fun of
him, or reprimanded him unfairly he got an excruciating
headache in the center of his head. He told the researcher
that the headaches made him more prone to anger with his
wife and his children and that he wanted treatment so that he
would not be at risk of abusing them. He had seen a few
doctors in Mexico and the US as well as a traditional Triqui
healer, all to no avail. The only remedy he found to make the
headache go away was drinking 24 beers. He resorted to this
form of self-medication a few times in an average week. A
week later, he saw one of the doctors in the local migrant
clinic to seek help, but left disappointed. In an interview, the
physician explained her perspective:
‘‘Well, yes, he thinks that he is the victim and thinks
that the alcohol or the headache makes him beat his wife
. . . but really he is the perpetrator and everyone else is
the victim. And until he owns his problem, he can’t really
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change. I’m on the CPS [Child Protective Services]
subcommittee and so I know a lot about domestic
violence, and what we’ve seen is that nothing really
works, none of these migraine medicines or anything, but
to put people in jail because then they see a show of
force. That’s the only thing that works because then they
have to own the problem as theirs and they start to
change. It’s a classic case of domestic abuse. He came to
see me once, and I told him to come back two weeks later
after not drinking. But he didn’t come back two weeks
later; instead, he came back a month later and saw not
one of our best doctors but an OK doctor, one of our
locums. Apparently, he told the doc something about
when people at work tell him what to do, it makes him
mad and that’s what gives him a headache. Obviously he
has issues. He needs to learn how to deal with authority.
We referred him to therapy. Do you know if he’s going to
therapy?’’
While the specific details of Crescencio’s story are unique,
his problem is representative of the common phenomena of
somatization and substance use among migrant laborers.
When asked to enumerate the most common problems of this
population, several physicians and nurses in the local migrant
clinic in Washington state responded that the issue they saw
most commonly was depression in the form of somatization
and/or substance abuse. Commonly, when somatic complaints
of unclear etiology and substance use were explored further
during interviews of pickers in the context of rapport and
trust, it became clear that many of the important proximal
determinants of such suffering involved social and cultural
factors. The most common of such factors included disrespect
from supervisors and area residents, lack of choices for work,
lack of opportunities for social advancement, fear of being
deported, and grieving the distance from family members and
home in Oaxaca state.
Bernardo: Trauma and Political Violence
Violence and trauma make up another important health-
related factor experienced by every Triqui picker in one way
or another, from commonly reported border violence, to
frequent violence at the hands of the Mexican military in
Oaxaca state, to regularly experienced violence in the
workplace. Some of the myriad health effects of such
experiences of violence are made clear in the extended case
study of Bernardo. Bernardo, a Triqui man who indicates that
he is now somewhere between 62 and 80 years old, was one of
the first Triqui people to come to the US in the 1980s. He
stopped working on the farm and moved back to Oaxaca
when he became a US resident in the 1986 amnesty. He has
spent five months each summer since then working in a fish
processing plant in Alaska in order to support himself, his
wife, and his sister. The rest of the year, he returns to the
mountains of Oaxaca, to be with his family. This area,
sometimes called ‘‘the Triqui Zone’’ of Oaxaca, is reputed to
be violent. There have been several small land wars between
Triqui villages and neighboring mestizo towns. There have
also been conflagrations between a local movement cum
political party, known as the Unified Movement for Triqui
Progress (MULT), and the political party that has been in
power in Oaxaca for dozens of years, the Institutional
Revolutionary Party (PRI) (Figure 8).
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Figure 8. A Hometown of the Triqui People in Oaxaca State, Mexico
The hometown in the mountains of Oaxaca, Mexico, of many Triqui migrant laborers.
DOI: 10.1371/journal.pmed.0030448.g008
During part of the field research in Oaxaca, the inves-
tigator lived and worked with Bernardo and his family in the
small city of Juxtlahuaca. This family is originally from a small
Triqui town further into the mountains; however, the family’s
land was on the edge of town next to a different village, with
whom there was a slow, ongoing land and political war.
Bernardo described this situation:
‘‘There have been many deaths. Oh! Many deaths! . . .
Maybe eight, maybe ten in the last two months ... They
kill between political parties. There is a lot of danger
here. If you say something and don’t realize someone
heard you and they are hidden, all of a sudden, ‘Pow!’ or
a knife and you are dead. I can’t go out at night, even if
we need something. Not at night, no! A lot of danger.
There is a lot of danger here. During the day is fine. I go
to the market and to the doctor, but not at night. I have
fear. A lot of danger, yes, yes.’’
Bernardo’s family, along with many others, moved to
Juxtlahuaca to escape the violence. With the money Bernardo
made migrating to the US, the family was able to build a
house and start a very small store in Juxtlahuaca.
One night, Bernardo asked the investigator if he knew of
any good medicine for Bernardo’s stomach. Bernardo
explained that he had experienced stomach pain for
approximately eight years. He stated, ‘‘My stomach does not
like food any more. I don’t have the desire (ganas) to eat. It
hurts to eat.’’ Before he goes to Alaska each spring, his doctor
in Juxtlahuaca gives him a long series of vitamin shots and
‘‘shots to give hunger’’ so that he has enough energy to work.
When he returns from Alaska, he is weak and thin and is given
another long series of the same shots to recover from the
work. The following description of his pain was punctuated
by groans and accented by many hand gestures:
‘‘It gives me such a pain! Right here [pointing to his
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stomach], such a pain, and it goes up . . . It jumps and
jumps like chords jumping, like this, like this [rapidly
opening and closing his hands] . . . I wake up and my
stomach hurts; ay! It was hard like this bench is hard . . .
So, I mash my stomach with a soda bottle. I mash, mash,
mash, mash here, mash here. And it helps a little. But, ay!
I can’t stand it. I can’t eat! Nothing! Each time I eat it
hurts; but it hurts. But I hold out [me aguanto], I hold
out, and I hold out until work is over. It feels like it is
twisting, twisting like so [rotating his hands quickly].’’
Bernardo explained that he has lost weight over the past
several years and feels weak each morning when he goes to
work his family’s cornfields at 5:00 A.M. He has to force himself
to eat a tortilla and an egg before working his fields.
In response to the question, ‘‘Why does your stomach
hurt?’’, Bernardo explains that it is because he has worked so
hard all of his life. Bernardo has lived the migrant life since the
age of eight, working from dawn until dusk seven days a week
in northern Mexico or the US, then returning to work hard on
his family’s land in Oaxaca state. ‘‘So much working (tanto
trabajar) wears out a body,’’ he explained with a weak smile.
Yet, when asked more specifically why the pain started
eight years ago, Bernardo added:
‘‘Also . . . the soldiers punched and kicked me many,
many times. Punched like this [making a fist and
punching into the air], here in my stomach. Ah! But
many beatings [chingadazos] . . . Until there was blood all
over. Because of the movement [the MULT]. People said
rumors against us and the soldiers, the blue ones, came
and beat me up.’’
Eight years ago, Bernardo was kidnapped and tortured by
the Mexican federal police in charge of narcotics enforce-
ment (‘‘the blue ones’’), who are supported by US Drug
Enforcement Agency money. Bernardo was beaten several
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times and put in prison. There, he was allowed no medical
help and resorted to drinking his own urine as a remedy to
help his abdomen heal. Furthermore, he reported that he was
denied food many of the days while in captivity. Members of
the ‘‘blue military,’’ as he called them because of their
uniform color, told him that he had been kidnapped under
the suspicion that he was part of the MULT, even though the
movement has no history with drugs. After several months,
the mayor of Juxtlahuaca wrote, signed, and stamped an
official paper stating that Bernardo had done no wrong, and
he was finally released from prison.
In an interview with the researcher, Bernardo’s physician in
Oaxaca state told the investigator that Bernardo has a peptic
acid problem like gastritis. He suggested that this gastro-
intestinal problem was due to eating ‘‘too much hot chili, too
much fat, and many condiments.’’ He continued, ‘‘They
[indigenous people] also don’t eat at the right time, but wait
a long time in between meals.’’ The physician gives Bernardo
an H2-blocker to decrease his peptic acid levels. He stated that
proton-pump inhibitors would work better, but they are too
expensive for Bernardo to afford. He also recommends that
Bernardo eat milk and yogurt. Finally, the physician gives
injections of vitamin B12 in order to treat what he diagnosed
as Bernardo’s neuropathy. He explained that this neuropathy
was due to the fact that indigenous people ‘‘bend over too
much at work and bend too much in their sleep.’’
While most Triqui people have not been wrongfully
imprisoned and beaten by the federal police, all of them
are affected in one way or another by political violence.
Beyond crossing the politically violent border between the US
and Mexico [46], Triqui migrant laborers deal with land wars
and political violence in their hometowns every time they
return home. For some, like Bernardo, this leads to somatic
complaints, for some it leads to poor mental health, and for
still others it leads to mortal injury (e.g., five Triqui people
involved in this research project were shot in Oaxaca, four of
them fatally, during the field research; see also [47,48]). Much
of the violence in southern Mexico is directed against
indigenous people, especially against those involved in
movements working toward equality. This violence affects
indigenous people not only in Mexico, but also when they are
in the US as migrants.
Racism, Naturalization, and Internalization
The second primary question of the hypothesis-testing
phase follows: How has the order of ethnic, citizenship, labor,
and health inequalities become seen as so normal that it is
rarely questioned or challenged? Though there were many
different prejudices, stereotypes, and metaphors employed by
interviewees to make sense of these inequalities, one of the
most prevalent involved perceptions of natural differences
among the bodies of different ethnicities. When asked why
very few Triqui people were harvesting apples, the field job
known to pay the most, the Tanaka Farm’s apple crop
supervisor explained in detail that ‘‘they are too short to
reach the apples, and, besides, they don’t like ladders
anyway.’’ He continued that Triqui people are perfect for
picking berries because they are ‘‘lower to the ground.’’ When
asked why Triqui people have only berry-picking jobs, a
mestiza Mexican social worker in Washington state explained
that ‘‘a los Oaxaqueños les gusta trabajar agachado [Oaxacans
like to work bent over],’’ whereas, she told me, ‘‘Mexicanos
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[mestizo Mexicans] get too many pains if they work in the
fields.’’ In these examples and the many other responses they
represent, perceived bodily difference along ethnic lines
serves to justify or naturalize inequalities, making them
appear purely or primarily natural and not also social in
origin. Thus, each kind of ethnic body is understood to
deserve its relative social position.
At the same time that area residents and other farm
employees naturalized the position of Triqui pickers, it was
also rare for the Triqui pickers to question the hierarchies
described above. On one of the days when the investigator
picked strawberries, a tractor with long metal extensions
spraying something in the air drove through the same field
that was being picked. The anthropologist asked a supervisor
what it was. ‘‘Do you really want to know? You sure you want
the truth? Dangerous insecticides,’’ he said, shaking his head.
In addition, one of the primary hand-washing and outhouse
stations on the edge of the field was located within an area of
several large canisters marked with pesticide danger signs.
Strawberry pickers in Washington state worked every day
without gloves as the visible pesticide residues dissolved in
the mixture of strawberry juice and morning dew that would
stain their hands dark maroon for days. If they ate anything,
they ate it in the fields, while picking, without washing their
hands to save time and make the minimum weight. The only
education for pickers about pesticides came from a short
warning cassette tape in monotone Spanish played inaudibly
in one corner of a huge warehouse full of 100 or more
workers and their children during the picker orientation
(Figure 9).
The same week as the spraying described above, the
researcher, along with several Triqui pickers, watched a
video about the health-related dangers of pesticides. After-
ward, one commented matter-of-factly that ‘‘pesticides affect
only white Americans (gabachos) because your bodies are
delicate and weak,’’ whereas ‘‘we, the Triquis, are strong and
hold out (aguantamos).’’ The others agreed. Here, Triqui
people internalize their position in the labor and health
hierarchy through their pride in perceived bodily differences.
Triqui people naturalize the labor hierarchy utilizing similar
perceptions of ethnic difference. Because of these percep-
tions, the migrant body is seen as belonging in its position in
the very system that then leads to its deterioration.
Figure 10 summarizes, utilizing a conceptual diagram,
many of the themes resulting from this field research. The y-
axis represents respect, health, financial security, and control
over one’s own time as well as control over others’ labor. The
various columns along the x-axis show differences among
types of work, citizenship statuses, languages, and ethnic
groups. Gender is another important variable that is not
considered here due to space constraints, but should be
examined further in future research.
Discussion
In conclusion, this research reveals insights into the
relationships between ethnic and citizenship prejudices and
the health status and health-care experiences of migrant
laborers. The health and well-being of such workers are
influenced on several levels from international to domestic,
as well as local to occupational and clinical. To summarize the
results of this study, working and housing conditions are
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Figure 9. Pesticide Containers Surround Hand-Washing Station and Outhouse
Containers of pesticides surround one of the hand-washing stations and outhouses on the farm.
DOI: 10.1371/journal.pmed.0030448.g009
organized from best to worst among farm employees
according to ethnicity and citizenship status: from white or
Asian-American US citizen to Latino US citizen or resident to
undocumented mestizo Mexican to undocumented indige-
nous Mexican. This ethnicity–immigration–labor hierarchy
determines a correlated hierarchy of health status, with the
undocumented Triqui Mexicans having the worst health. Yet,
those involved—including medical professionals—are largely
unaware of the social context of health. Subtle forms of
racism, specifically understandings of ethnic bodily differ-
ences, function to justify and naturalize the place of each
group in the labor and health hierarchies (Holmes, In Press).
The choice to use qualitative methods presents advantages
as well as disadvantages. The ethnographic study design does
not allow for a determination of the strength of association
among different factors studied. Similarly, ethnographic
methods do not allow for the calculation of prevalence and
incidence of various forms of suffering. The relatively small
study population and its geographical specificities limit the
ability to generalize to other populations of migrant workers
worldwide. The recruitment of the majority of the study
participants from the Tanaka Farm labor pool inevitably
excluded those workers who had become sick or injured
enough to be unable to return to their work, and this may,
therefore, lead to an underestimation of suffering.
As shown by various researchers in the field of social
studies of science and technology (e.g., [49–51]), the social
position and social interactions of scientific investigators
influence their own research as well as how their results are
viewed by others. This is true not only in laboratory science,
but also in social science. In the case of ethnographic research
such as the present study, the interactions of the investigator
and the participants become data for analysis. Much of this
kind of data is considered above. In addition, the researcher
affected the populations studied in several other practical
ways. For example, his presence during the housing search of
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Social Context of Migrant Health
the Triqui people in central California appeared to make
landlords of substandard housing nervous and, thus, more
likely to reject these Triqui people as tenants. His presence in
Washington state played a significant role in raising aware-
ness of the desires of Triqui laborers to have English as a
Second Language (ESL) courses as well as gravel covering the
alternately dusty and muddy labor camp driveways. Through
the coalition of various community members and organiza-
tions, ESL courses were offered in the labor camps during the
second summer of the research and the primary camp
driveways were graveled. The investigator’s presence in
Oaxaca meant that the families with whom he lived could
communicate—via sending and receiving small packages of
food and clothing—more easily with their loved ones across
the border, though it also meant that the children in these
families were sometimes made fun of by their peers. As a final
example, the investigator was involved in raising awareness of
the desire of several of the Triqui high school students to
have a Triqui Alto dictionary in order to prevent the
continued loss of their language. Through various circum-
stances, a linguistics doctoral student from one of the
investigator’s home institutions is currently working on this
project (C. Dicanio, personal communication).
Ethnographic research did, however, allow for in-depth
investigation into the dynamics of complex social forces—
such as meanings of ethnicity and experiences of inequal-
ities—that are not amenable to epidemiologic or survey
studies alone. Participant observation allowed the investiga-
tor to move beyond worker, employer, or medical profes-
sional report in order to observe and experience interactions
and conditions firsthand. Ethnography uniquely allowed for
the investigation of these multiple forms of data and multiple
points of view in order to produce data and analysis that
more fully represent the complex reality it studied. Finally,
long-term involvement in the lives of marginalized groups
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Figure 10. Conceptual Diagram of Hierarchies on the Farm
DOI: 10.1371/journal.pmed.0030448.g010
that may often be suspicious of outsiders allowed for rapport
building that increases the validity of data.
Structural Features of Inequalities
As the qualitative data above suggest, these hierarchies are
not conscious or willed on the part of the farm owners or
managers. Much the opposite, larger structural forces as well
as the anxieties they produce drive these inequalities. The
Tanaka Farm executives are ethical people who have a vision
of a good society that includes family farming. Perhaps
instead of blaming the growers, it is more appropriate to
understand them as human beings trying to lead ethical,
comfortable lives, committed to the family farm in the midst
of an unequal, harsh system. The corporatization of US
agriculture and the deregulation of international free
markets squeeze growers such that they cannot imagine
increasing the pay of the pickers or improving the labor
camps without bankrupting the farm. In this case, structural
violence is enacted by market rule and then channeled
through international and domestic racism, classism, sexism,
and anti-‘‘illegal’’ immigrant sentiments. Wacquant [52]
points out the analytical pitfalls of overly generalized,
nonspecific use of the term ‘‘structural violence.’’ This term
is employed here to mean simply the violence—visible as
injury to body and self-respect—enacted by social structures,
primarily exploitative economic relations. Engels [53] ex-
plains that the effects of unequal social structures can be ‘‘as
violent as if [the economically exploited] had been stabbed or
shot.’’
Abelino, Crescencio, Bernardo, and other farm workers
endure forms of suffering that are directly and indirectly
influenced by social and political forces. The late modern
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system of free-trade capitalism has compounded global
inequities, leading southern Mexico into a deepening
economic depression. This poverty is one of the primary
factors producing the local land wars as well as the survival-
seeking out-migration of able-bodied workers. Once in the
US, these people are relegated to some of the most unhealthy
labor positions. The political alliances of the Mexican
military, with its ties to the US federal government via
financing, have translated into a repression of the many
movements seeking redistribution of power in a more
equitable fashion. The torturing of members of indigenous
rights movements by the military functions not only to
deepen the suffering of its victims, like Bernardo, but also to
reinforce the neoliberal economic system and thus deepen
global economic inequalities.
Symbolic Features of Inequalities in Society and the Clinic
In order to further understand the naturalization of the
inequalities described above, Pierre Bourdieu’s theory of
symbolic violence proves effective [54–56]. According to
Bourdieu, symbolic violence is the naturalization and
internalization of social asymmetries. He explains that
humans perceive the social world through lenses issued forth
from that very social world. Thus, we misrecognize the social
order as natural. The structures of inequalities comprising
the social world are thus made invisible and taken for granted
for all involved. The concept of symbolic violence also
inheres a sense of internalization such that one does not
perceive only others, but also oneself, as belonging in
particular social and economic locations. As seen in the
qualitative data above, perceived bodily differences along
ethnic lines comprise one of the lenses through which
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symbolic violence is enacted such that each ethnic group is
understood to deserve its relative social position. The
structural violence inherent to segregated labor on the farm
is so effectively erased precisely because its disappearance
takes place at the level of the body, and is thus understood to
be natural. This was seen in the data retrieved from area
residents, farm employees, and medical professionals.
Physicians and nurses in migrant clinics work hard under
relatively poor conditions without access to state-of-the-art
medicines and instruments and are often frustrated by the
obstacles in a system with irregular funding and virtually no
insurance coverage. One physician in Washington state
explained one of many obstacles in her work: ‘‘Most
[migrants] don’t have any insurance, so that’s even harder
’cause you start them on a medication and you know they are
just going to be off it again wherever they go next.’’ Despite
the hard work and dedication of clinicians in the field of
migrant health, the Triqui people regularly stated that the
‘‘doctors don’t know anything (no saben nada).’’ What explains
this apparent discrepancy?
In The Birth of the Clinic, Michel Foucault describes what he
calls the ‘‘clinical gaze’’ [57]. Foucault explains that there was
a change in clinical medicine with the advent of cadaveric
dissection in the early modern era. Whereas physicians used
to focus on the words of the patient, the symptoms as
expressed by the patient, they began to focus on the isolated,
diseased organs, treating the patient more and more as an
object, a body. As would be expected within this paradigm,
the medical professionals described above saw the Triqui
bodies in their offices, yet were unable to engage the human
and social context leading to their suffering. These clinicians,
like most medical professionals, were not trained to see the
social determinants of health problems. Thus, it was
unavoidable that they would fall into the trap of utilizing a
narrow lens that decontextualizes sickness. Thus, many of the
most proximal determinants of suffering were left unac-
knowledged, unaddressed, and untreated.
Beyond this acontextual gaze, physicians in North America
today are also taught to see behavioral factors in health—such
as lifestyle, diet, habits, and addictions. Behavioral health
education has been added as part of the laudable move to
broaden medical education within the paradigm of biopsy-
chosocial health first described by George Engel in 1977 [58].
However, without being trained to consider the global
political economic structures and local prejudices that shape
the suffering of their patients, health professionals are
equipped with only biological and behavioral lenses to
understand suffering.
As seen in the cases above, well-meaning clinicians often
blame the sickness on the patient—e.g., the assumed incorrect
bend while picking, the supposed trouble with authority, or
the ‘‘incorrect’’ eating and sleeping habits—without appreci-
ating the local hierarchies and international forces that place
their patients in injurious working conditions in the first
place. Ironically, the progressive move to include behavioral
health in medical education without the correlate inclusion
of social context may be precisely that which leads clinicians
to blame the victims of social suffering. In addition, stereo-
types of Mexican migrant workers—e.g., that the men are
alcoholics and abuse their wives—are supported by lenses
that decontextualize the suffering and marginalization often
at the root of their poor health behaviors. Even those health
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Social Medicine in the 21st Century
Social Context of Migrant Health
professionals acutely aware of the social determinants of
health may resort to biological and behavioral explanations
as a defense mechanism against what they experience as
overwhelmingly hopeless. The relationship between undocu-
mented Mexicans and the migrant clinic is further convo-
luted by the clinic’s own affiliation with the US government
via funding and regulations. This affiliation foments inter-
mittent rumors and fear among Triqui workers that clinic
staff may turn them in to the Border Patrol.
Implications for Medicine and Beyond
Drawing on the ethnographic data above, this article will
close with recommendations toward improving the health of
migrant farm workers in four areas: research into ethnic and
immigration status disparities in health, clinical interactions
with individual migrant laborers, medical education, and
policy making.
First, in order to further understand ethnic and citizenship
disparities in health, researchers must take into account the
international context of migration. Research remaining
limited to local and domestic factors will inevitably fall short
of describing the reality for immigrants. Qualitative and
quantitative researchers must find ways to explore the
implications of racism and anti-immigrant prejudices in the
development and maintenance of health disparities. Further
dissecting the mechanisms by which social inequalities
become taken for granted is an especially critical area for
such research, especially in the current political climate. Only
in this way will people become able to see the social
determinants of such inequalities and capable of imagining
and working toward alternatives. In-depth, ethnographic
methods appear to be especially capable of describing the
webs of causation of health disparities without losing the
complexity of the context in which they are embedded.
Second, the ethnographic data indicate several steps
clinicians can take in order to provide more appropriate
and competent care to this population (see also [59]). Given
the difficulties of clinical encounters in a medical system
that is practiced—as it is in the US—on an individual level,
often semi-controlled by funders, and usually in unrealisti-
cally short time allotments, clinicians must be creative within
the constraints of their context of practice, while also
considering means to change these constraints. The first step
for clinicians to provide more appropriate care is screening,
identifying an individual patient as a migrant laborer. The
clinician may ask such questions as: Where is the patient’s
hometown? How long have they been in the area and in their
present post of employment? What are their work and
housing arrangements? Does the patient feel that she has the
ability to negotiate with her employer and landlord over
these conditions? For undocumented immigrants, a physi-
cian’s acknowledgement of these circumstances and valida-
tion of their right to safe conditions may be a powerful
intervention in and of itself (see also [59]). In addition,
workers at risk of depression and substance use may be
identified and referred for further help. The second step is
to consider the contributing etiologies of a patient’s sickness
from not only biological and behavioral but also social
domains [60–62]. The clinician can ask herself: How do
international and local inequalities, occupational structures,
economic forces, racial inequalities, and other social and
cultural factors influence the health and sickness of the
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Social Medicine in the 21st Century
patient? This identification and acknowledgement of social
determinants of disease not only allows for a more precise
understanding of a patient’s sickness, but also prevents
unfairly blaming the patient for their sickness. This, then,
avoids inflicting further psychological harm at the same time
that it allows for the building of a more effective therapeutic
relationship. Finally, in their mandate to alleviate suffering,
physicians are called to attend to all of the determinants of a
given patient’s sickness. Instead of addressing solely the
biological and behavioral etiologies by offering only medical,
surgical, and psychological therapy, this mandate indicates
that physicians should also tackle social determinants. This
could take the form of advocating for the amelioration of
specific workplace hazards, educating migrant laborers about
their rights, and pointing them in the direction of available
services in the area, or becoming involved in policy making
(as described below).
Third, in order for the clinical changes above to take
effect, medical education must be broadened to reflect the
multifaceted etiology of disease. Those readers who work in
medical curricula will recognize that the vast majority of
training programs spend most of their time on biological or
pathophysiological etiologies and a small part of their time
on psychological or behavioral components. Very few
programs spend any appreciable time teaching social
analysis to medical trainees. This study shows that the social
context is critical to the development of sickness and
suffering among migrant workers, and this is likely true
among other populations. The lack of training to recognize
social determinants of disease relates partially to a paucity
of capable educators in this area. Most academic physicians
do not have adequate training in social analysis themselves
in order to teach it to their students. Most social scientists
do not know how to speak the language of medical students
and, thus, either come off as ethereal or attempt to simplify
their message and inadvertently make it boring. Medical
educators must attempt new methods for social medicine
education—such as the case-based program of social
medicine grand rounds at the University of California San
Francisco—and new programs and further funding must be
developed for training social medicine educators who are
both knowledgeable in social theory and conversant in
clinical medicine.
Policy making will be the final area of consideration of
implications from this study. In the specific case of Triqui
migrant laborers and in the world at large, medicine and
sociopolitical inequalities are interrelated. As Rudolf Virch-
ow argued in the 19th century after his investigations in
population health, ‘‘Medicine is a social science, and politics
is nothing else but medicine on a large scale’’ [63]. He also
said that, due to the unequal distribution of morbidity and
mortality along socioeconomic classes and the calling of
physicians to alleviate suffering first and foremost, ‘‘physi-
cians are the natural attorneys of the poor’’ [ibid]. With these
reasons in mind and considering the moral authority of
medical personnel in much of the world, it is essential for
physicians to consider and become involved in politics. In
this effort, it is important to take cues from the long history
of health and community activism that has revolved around
migrant farm workers’ rights as related to the present
research findings, from the United Farm Workers nationally
to the Tierra Nueva Family Resource Center in western
58
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Social Context of Migrant Health
Washington state; from Marion Moses and the Pesticide
Education Center’s online database to the Food Justice
Alliance’s roundtable discussions; and from the No More
Deaths Movement of Arizona to the programs of California
Rural Legal Assistance.
Mexican migration to the US is complexly determined by
international market policies, global power inequalities, as
well as regional and local prejudices and fears. The nexus of
political economic structures driving migration with legal
structures barring entry to immigrants and widespread anti-
immigrant sentiments proves unhealthy and dangerous. This
nexus is becoming especially volatile at the time of this
writing [64], with the US Congress discussing bills that would
give local police the authority to investigate and enforce
federal immigration laws, federal policy makers proposing
hundreds of miles of new fence and significantly increased
military personnel along the already militarized US-Mexico
border, and the George W. Bush administration discussing a
poorly defined temporary worker program that appears to
make the power differential between worker and employer
even greater than it is already. While policy change is
critically necessary, any proposal that does not address the
primary political and economic determinants of migration is
doomed to fail. Amelioration of the social suffering inherent
to undocumented labor migration requires a careful con-
sideration and confrontation of historical, political, eco-
nomic, and symbolic factors producing and reproducing this
phenomenon. The further deregulation of international and
domestic trade—such as the currently proposed Central
American Free Trade Agreement [65]—should be questioned
critically and vocally for its potential effects on marginalized
people and their ability to survive in their home commun-
ities without being forced to migrate for work. Policies
supporting the labeling of products according to the labor
conditions under which they were made—such as those
agricultural products from farms with United Farm Workers
contracts, thus allowing consumers to make decisions related
to this information—should be considered strongly. The
growing Domestic Fair Trade Working Group is working
toward such a labeling program in the US [66].
The Triqui people involved in this study indicated
repeatedly that they want to keep their homes in Oaxaca
and work in the US one season at a time. They support a fair
temporary worker system that does not increase the power
differential between employers and employees, as many fear
the George W. Bush administration’s current plan would do.
The poorly outlined Bush proposal appears to link legal
permission to be in the US with one specific employment
contract, thus giving that particular employer the virtual
power to deport via firing [67]. This inability to change
employers is reminiscent of the recent convictions of slavery
related to the horrendous conditions in which many
migrants are already forced to work (see also [68]). A fairer
program would allow employee mobility when working
contracts are undesirable, unfair, or unfulfilled. The US
government and US society gain much from migrant
laborers and give little back beyond prejudice, criminaliza-
tion, and suffering [16,22,69]. This dishonest relationship,
similar to many labor migration systems around the world,
must be acknowledged and changed. Medical professionals
have the calling and the authority to work toward this
change.
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Supporting Information
Text S1. Translation of the Abstract into Spanish
Found at DOI: 10.1371/journal.pmed.0030448.sd001 (22 KB DOC).
Acknowledgments
Special gratitude to all those who participated in the study, letting the
investigator into the mundane, intimate, and exciting events of their
everyday lives. Thank you to the many professors, friends, family
members, classmates, and study participants who read and com-
mented on early drafts of this paper. Thank you, especially to my
doctoral committee members: Philippe Bourgois, PhD (UCSF); Nancy
Scheper-Hughes, PhD (UCB); Stanley Brandes, PhD (UCB); Loı̈c
Wacquant, PhD (UCB); Thomas Denberg, MD, PhD (UCHSC), Gaylene
Becker, PhD (UCSF), and Catherine Maternowska, PhD, MPH (UCSF).
Thank you, also to the Violence and the Americas Writing Group at
the Center for Latin American Studies at UCB, all of whom gave
feedback on my analysis and writing. Thank you to Francisco Guzman
for his conceptual feedback and design expertise. Finally, any
inconsistencies or oversights within this article are my own and
should not be taken to reflect upon those acknowledged above.
Author contributions. SMH designed the study, analyzed the data,
enrolled patients, and wrote the paper.
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specific funding for this study. ABSTRACT
Competing Interests: The authors
have declared that no competing Background
interests exist.
Systematic evidence on the patterns of health deprivation among indigenous peoples
Editors’ Summary Academic Editor: Simon Hales, remains scant in developing countries. We investigate the inequalities in mortality and
University of Otago, New Zealand
Background. For centuries, recent immigrants have experienced poorer What Do These Findings Mean? The author concludes that ‘‘structural
substance use between indigenous and non-indigenous, and within indigenous, groups in
living and working conditions than more established inhabitants, which racism and anti-immigrant practices determine the poor working Citation: Subramanian SV, Smith India, with an aim to establishing the relative contribution of socioeconomic status in
in turn means that the health of immigrants is often worse. Immigrants conditions, living conditions, and health of migrant workers.’’ Further- GD, Subramanyam M (2006) generating health inequalities.
more, it seems that ‘‘subtle’’ racism among all involved, including Indigenous health and
often take on the very lowest-paid jobs. One might suppose that in more
clinicians, reduces awareness and perhaps even allows tacit acceptance socioeconomic status in India. PLoS
recent years the increasing prosperity of countries such as the United Med 3(10): e421. DOI: 10.1371/
States and those of western Europe would have reversed this trend. But of these patterns of health. It seems that targets for specific health
journal.pmed.0030421
Methods and Findings
as recently as 2005 the New York–based Human Rights Watch published interventions for these workers will need to be closely integrated with a
a report entitled ‘‘Blood, Sweat and Fear,’’ which documented appalling broader approach to improving migrant health including medical Received: December 28, 2005 Cross-sectional population-based data were obtained from the 1998–1999 Indian National
conditions for the mostly immigrant workers in the US meat and poultry education and policymaking. Accepted: August 4, 2006 Family Health Survey. Mortality, smoking, chewing tobacco use, and alcohol use were four
industry. In the UK also, legislation has recently been introduced to try to Published: October 24, 2006 separate binary outcomes in our analysis. Indigenous status in the context of India was
Additional Information. Please access these Web sites via the online
regulate the activity of ‘‘gang masters’’ who control large groups of version of this summary at http://dx.doi.org/10.1371/journal.pmed.
immigrant workers. This legislation was triggered by public horror about DOI: operationalized through the Indian government category of scheduled tribes, or Adivasis,
0030448. 10.1371/journal.pmed.0030421 which refers to people living in tribal communities characterized by distinctive social, cultural,
the deaths in 2004 of 21 immigrant cockle pickers who drowned in � Migration Dialogue regularly consolidates news related to immigration
Morecambe Bay in Lancashire. A group of workers at particular risk of around the world Copyright: � 2006 Subramanian et
historical, and geographical circumstances.
poor conditions because of the seasonal and uncertain patterns of work � Global Exchange has information related to fair trade, CAFTA, and al. This is an open-access article Indigenous groups experience excess mortality compared to non-indigenous groups, even
are those who work as farm laborers. other related current events distributed under the terms of the after adjusting for economic standard of living (odds ratio 1.22; 95% confidence interval 1.13–
� United Farm Workers has information related to working conditions of Creative Commons Attribution
Why Was This Study Done? There are relatively few studies that have migrant laborers License, which permits unrestricted 1.30). They are also more likely to smoke and (especially) drink alcohol, but the prevalence of
looked in detail at the pattern of health problems among migrant farm � PCUN has information related to migrant laborers in the Pacific use, distribution, and reproduction chewing tobacco is not substantially different between indigenous and non-indigenous
workers in the US. Understanding the working conditions of these Northwest in any medium, provided the
workers would be of help in understanding more about their health
groups. There are substantial health variations within indigenous groups, such that indigenous
� The Border Action Network has information related to the US-Mexico original author and source are
problems and, in particular, how to prevent them. One problem is that border credited. peoples in the bottom quintile of the indigenous-peoples-specific standard of living index have
few of these workers are seen in the usual health-care settings; few of � Border Links provides education and experiential learning related to an odds ratio for mortality of 1.61 (95% confidence interval 1.33–1.95) compared to indigenous
them have health insurance. Abbreviations: CI, confidence
the US-Mexico Border
interval; INFHS, Indian National
peoples in the top fifth of the wealth distribution. Smoking, drinking alcohol, and chewing
� Tierra Nueva and the Peoples Seminary provide social services for tobacco also show graded associations with socioeconomic status within indigenous groups.
What Did the Researchers Do and Find? The paper’s author spent 15 Family Health Survey; OR, odds ratio;
migrant laborers in the Pacific Northwest and education related to the SRS, Sample Registration System
months with a group of indigenous Triqui Mexicans as they migrated lives of migrant workers
around the western US and Mexico working on farms. He used a type of � The Pesticide Action Network of North America provides information
research called qualitative research, which involved observing and *To whom correspondence should Conclusions
related to pesticides and health be addressed. E-mail: svsubram@
interviewing more than 130 farm workers and 30 health workers on � The Pesticide Education Center provides detailed lists of the contents
farms and in clinics. He found that working and housing conditions were
hsph.harvard.edu Socioeconomic status differentials substantially account for the health inequalities between
of pesticides and their health effects
organized according to ethnicity and citizenship, and that there was an � The Center for Comparative Immigration Studies conducts research indigenous and non-indigenous groups in India. However, a strong socioeconomic gradient in
unofficial hierarchy, with undocumented indigenous Mexicans having and education projects related to international migration health is also evident within indigenous populations, reiterating the overall importance of
the worst health. Even worse, migrant farm workers were often blamed � Human Rights Watch publishes and campaigns on many issues, socioeconomic status for reducing population-level health disparities, regardless of indigeneity.
for their sicknesses by those in charge of them or those from whom they including conditions for workers, such as that on the US meat-packing
sought help. industry
The Editors’ Summary of this article follows the references.

60 iMedPub :: Thematic Collections :: Volume 1 iMedPub :: Thematic collections :: Volume 1 61

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Social Medicine in the 21st Century
Introduction
Indigenous people are amongst the poorest and most
marginalized population groups experiencing extreme levels
of health deprivation [1]. The suboptimal health status of
indigenous peoples and the health inequalities between
indigenous and non-indigenous populations reflect a funda-
mental failure to ensure the freedom of indigenous peoples
to fully realize their human, social, economic, and political
capabilities [2]. Importantly, the health and wealth disparities
between indigenous and non-indigenous populations are
universal [3,4]. Improving indigenous health as well as
eliminating the indigenous/non-indigenous health divide
requires addressing the knowledge gap related to under-
standing the patterns of indigenous health deprivation [3].
Surveillance of, as well as research on, indigenous health
remains inadequate [3], even though this gap is beginning to
be bridged in developed countries [5–7]. While the unfavor-
able health status of indigenous peoples in developed
countries has been shown across a range of outcomes,
including mortality [8], disease [9], health behaviors [10,11],
and health care [12,13], there are few systematic accounts of
the health of indigenous peoples in developing countries
[14,15].
This study examines the patterns of health deprivation
amongst indigenous populations in India. Notwithstanding
the challenges of defining indigenous populations [16],
including those specific to India [17,18], the group classified
by the Indian government as ‘‘scheduled tribes’’ has often
been categorized as being indigenous [19,20]. Over 84 million
people belonging to 698 communities are identified as
members of scheduled tribes [18], constituting 8.2% of the
total Indian population [21]. Through a constitutional
mandate [18], formulated in 1950, scheduled tribes have been
formally recognized as a distinct community in India.
Consequently, there exist clear governmental policies for
affirmative actions targeted towards scheduled tribes [22],
and their members are routinely enumerated in national
surveys [23] and censuses [21]. The Indian government
identifies communities as scheduled tribes based on a
community’s ‘‘primitive traits, distinctive culture, shyness
with the public at large, geographical isolation and social and
economic backwardness’’ [18], with substantial variations in
each of these dimensions with respect to different scheduled
tribe communities [24]. While ‘‘scheduled tribes’’ is an
administrative term adopted by the Government of India,
the term ‘‘Adivasis’’ (meaning ‘‘original inhabitants’’ in
Sanskrit) is often used to describe the different communities
that belong to scheduled tribes. The Adivasis are thought to
be the earliest settlers in, and the original inhabitants of, the
62
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Indigenous Health and Socioeconomic Status
Indian peninsula, with their presence dating back to before
the Aryan colonization (pp. 37–38 of [25]). The distinct
identity of Adivasis has many aspects: language, religion, a
profound bond linking the individual to the community and
to nature, minimal dependence on money and markets, a
tradition of community-level self-government, and an egali-
tarian culture that rejects the rigid social hierarchy of the
Hindu caste system [26], all of which closely approximates the
indigenous definition articulated at the international level
[27]. Since the formal recognition of scheduled tribes in 1950,
the proportion of individuals of scheduled tribes in the total
Indian population has increased from 5.3% (1951) to 8.2%
(2001) [18]. The concentration of scheduled tribes varies
substantially between the Indian states [21]. In northeastern
states, scheduled tribes constitute 65% or more of the total
population; in Chattisgarh, Jharkhand, Orissa, Madhya
Pradesh, Gujarat, and Rajasthan this proportion ranges
between 13% and 32% of the population; and in other
states, including Punjab, Haryana, Delhi, and Goa, the
contribution of scheduled tribes to the total population is
negligible. In this study, we consider the scheduled tribe
category as being equivalent to indigenous within the Indian
context.
Existing research on indigenous health in India, as in many
developing countries [28–30], is restricted to specific indig-
enous groups [31,32]. The ability to meaningfully generalize
the extent and nature of indigenous health patterns in India,
consequently, remains limited. Using a nationally represen-
tative sample, we investigate the extent to which the
indigenous/non-indigenous health divide is a reflection of
the differences in socioeconomic well-being between indig-
enous and non-indigenous groups. If differential distribution
of socioeconomic resources accounts for indigenous/non-
indigenous health inequalities, this would emphasize the need
to redress the pervasive and chronic socioeconomic inequal-
ities between the indigenous and non-indigenous groups.
Furthermore, we also examine the extent to which socio-
economic well-being predicts health outcomes within indig-
enous populations. If health inequalities are fundamentally
social in nature [33,34], and have less to do with being
indigenous, we should expect a socioeconomic gradient in
health even within this marginalized population. The
patterns of indigenous health deprivation and heterogeneity
are investigated for all-cause mortality and tobacco and
alcohol consumption; the public health relevance of tobacco
and alcohol use in India has been well documented in recent
years [35–43].
Methods
Data
The analyses are based on the representative cross-sec-
tional 1998–1999 Indian National Family Health Survey
(INFHS) household data [23]. The household data were
obtained by face-to-face interviews, conducted in one of the
18 Indian languages, in the respondent’s own home, and
information was obtained on a range of health, demographic,
and socioeconomic topics for each member of the household.
The survey response rate ranged from 89% to almost 100%,
with 24 of the 26 states having a rate of more than 94% [23].
All households were geocoded to the primary sampling unit,
district, and state to which they belonged. The primary
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sampling units, hereafter called ‘‘local areas,’’ were villages or
groups of villages in rural areas, and wards or municipal
localities in urban areas.
Outcomes
The study analyzed the health inequalities between
indigenous and non-indigenous groups across four different
outcomes: mortality, smoking tobacco use, chewing tobacco
use, and alcohol consumption. All four outcomes were
measured at the level of individuals and were analyzed
separately; the lowest unit of observation for this study was
the individual. We briefly describe the survey-based defini-
tion of each of the outcome variables.
Mortality. The respondent to the household survey
(typically the head of the household) was asked about the
number of living resident members of the household and the
number who had died in the 2 y (1997–1998) preceding the
survey. For each deceased household member, information
was obtained on gender and age at death. The total number
of household members who were alive at the time of the
survey was 517,379, and the number of deaths reported for
the previous 2 y was 11,827. For the mortality analysis, we thus
observed a sample of 529,206 individuals (number of house-
hold members alive and dead). This constituted the basis for
defining the outcome variable mortality, which was then
modeled as a dichotomous outcome (one if an individual was
dead, zero if alive) [23]. Thus, mortality was an outcome even
though it was estimated from a cross-sectional survey. Such
indirect methods of mortality assessment are widely utilized
in demographic studies, and their suitability for this is widely
tested [44,45].
Smoking behavior, tobacco chewing, and alcohol use. The
respondent to the household survey was also asked, via three
separate questions, ‘‘Does anyone listed as a member of this
household in this survey smoke/chew tobacco/drink alcohol?’’
Independent Variables
Predictors were measured at the individual and at the
household level simultaneously. For the mortality analysis, the
individual predictor variables that were common to both the
deceased and alive household members were gender and age.
At the household level, the respondent to the household
survey was asked about (1) whether he or she was a member of
a scheduled tribe (our operational definition of indigenous),
(2) religious affiliation, and (3) the possession of various
production and consumption assets. Under the reasonable
assumption that characteristics associated with being indig-
enous, religious affiliation, and standard of living would not
have changed in the 2-y window when mortality was reported,
we assigned the values of the household predictors to both
the deceased and alive household members. Thus, for the
mortality analysis, the predictors included age and gender at
the individual level, and ethnicity, religion, standard of living,
and urban/rural at the household level.
Standard of living—the key indicator for socioeconomic
status common to the analysis pertaining to mortality and the
three health behaviors—was measured by household assets
and material possessions. While there is some argument
about the relative merits of using asset, consumption, or
income data to measure economic well-being, empirical
evidence suggests that there is a strong positive association
between the three types of data, and as such an asset index, as
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Social Medicine in the 21st Century
Indigenous Health and Socioeconomic Status
used here, is a reliable proxy for household income [46,47].
To the extent this is true, asset ownership can be considered a
reasonable proxy for consumption, in addition to being an
indicator of economic status in its own right, and this has also
been validated in the Indian context [48]. We adapted the
INFHS standard of living index to the ‘‘proportionate
possession weighting’’ used in studies of poverty in a number
of countries [49–51]. The INFHS standard of living index and
the weighted standard of living index that we used were
correlated to the order of 0.93 (p , 0.001). The weights for
each item were derived on the basis of the proportion of
households owning the particular item. Thus, for example, if
40 of the households in a sample of 100 owned a radio, then a
radio would get a weight of 60 (100 � 40). Weights for each
item were summed into a linear index, and households were
allocated a final score. Since the standard of living index is a
constructed composite measure, it does not have a direct
interpretation. We followed the convention of dividing the
population into quintiles of the standard of living index for
our analysis.
Urban/rural status was categorized in terms of the location
of the household: large city (population � 1 million), small
city (population 100,000–1 million), town (population �
100,000), or village/rural area.
For the analysis related to tobacco and alcohol consump-
tion, we additionally could specify marital status and educa-
tional attainment (in terms of years of schooling) at the
individual level. Tables 1 and 2 present the prevalence of
mortality (Table 1) and tobacco and alcohol use (Table 2) in
the sample population disaggregated for indigenous and non-
indigenous populations by the different variables studied.
Statistical Analysis
We modeled the variation in mortality and tobacco and
alcohol use using a multilevel modeling approach [52]. The
binary response, y (dead or not; smoke or not; chew tobacco
or not; drink alcohol or not), for individual i living in local
area j in district k in state l was formulated as:
� �
pijkl
logitðpijkl Þ ¼ log ¼ b0 þ bðXÞ þ u0jkl þ v0kl þ f0l
ð1 � pijkl Þ
ð1Þ
The equation consists of a fixed part, b0 þ b(X), and random
effects attributable to local areas (u0jkl), districts (v0kl), and
states (f0l). The parameter b0 estimates the log odds in the
outcome for the reference group, and the parameters b(X)
estimate the differential in the log odds in the outcome for
the different predictors. Assuming an independent and
identical distribution, the random effects are summarized as
r2u (local areas), r2v (districts), and r2f (states). These variance
parameters quantify the heterogeneity in the outcome at each
level, thus being suggestive of the independent importance of
geographic contexts [53]. Model estimates are marginal quasi-
likelihood-based with a first-order Taylor linearization
procedure [52,54]. Models were stratified for indigenous
and non-indigenous samples, and a formal test of interaction
was conducted to test for the differentials by the same
predictor in the two populations [55].
Specifically, we calibrated the following types of models: (1)
a pooled model of all indigenous and non-indigenous samples
separately for mortality, smoking, drinking alcohol, and
chewing tobacco (Table 3); (2) a gender-stratified model of
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Social Medicine in the 21st Century Social Medicine in the 21st Century
Indigenous Health and Socioeconomic Status
Indigenous Health and Socioeconomic Status

Use (%)
Alcohol

3.1

37.9
14.2
38.0
28.9
16.7
25.0
20.1
30.1
26.8
21.0
18.2
17.9
12.1
27.2

16.1
51.8

34.5
30.4
27.8
21.5
16.3
12.6
15.9
16.9
28.6
26.1
Table 1. Descriptive Information on the Analytic Sample Considered for the Mortality Analysis (1998–1999 INFHS)

Chewing (%)
Variable Subcategory All Non-Indigenous Indigenous

Tobacco
Total Deaths (%) Total Deaths (%) Total Deaths (%)

32.8
27.6
43.5
37.3
27.9
36.4
45.3
33.4
40.3
37.8
29.9
32.7
29.3
31.6
21.1
24.1
37.3

37.4
35.0
32.2
37.6
35.7
44.8
28.6
42.2
34.0
35.6
Ethnicity Non-indigenous 460,569 10,024 (2.2%)
Indigenous 68,637 1,803 (2.6%)
Age (in years) ,1 25,306 1,979 (2.1) 21,673 1,635 (7.5) 3,633 344 (9.5)

Smoking
2–5 50,157 646 (1.3) 42,831 475 (1.1) 7,326 171 (2.3)
6–18 157,540 691 (0.4) 135,813 527 (0.4) 21,727 164 (0.8)

7.4

15.5
42.3
27.3
17.6
20.7
24.9
21.9
33.4
25.4
19.4
23.1
16.0
22.0
26.7
31.5
19.0

26.1
25.3
23.9
27.1
21.8
27.4
16.1
26.0
24.6
24.8
(%)
Indigenous
19–44 196,184 1,679 (0.9) 171,648 1,352 (0.8) 24,536 327 (1.3)
45–64 70,208 2,304 (3.3) 61,981 1,993 (3.2) 8,227 311 (3.8)
�65 29,811 4,528 (15.2) 26,623 4,042 (15.2) 3,188 486 (15.3)

58
18,373
18,362
26,088

680
17,315

256
20,072
322
12,180

472

29,895
36,735
7,095
2,872

6,896
9,350
1,784
1,134

4,103

7,347
7,347
7,347
7,347
7,347
2,893

3,475
Total
Gender Female 303,795 7,274 (2.4) 269,765 6,492 (2.4) 34,030 782 (2.3)

(n)
Male 294,048 6,356 (2.2) 259,441 5,335 (2.1) 34,607 1,021 (3.0)
Religion Hindu 400,885 9,223 (2.3) 363,094 8,126 (2.2) 37,791 1,097 (2.9)

Use (%)
Alcohol
Muslim 68,172 1,340 (2.0) 67,527 1,322 (2.0) 645 18 (2.8)
Christian 33,045 647 (2.0) 10,576 196 (1.9) 22,469 451 (2.0)

11.8
17.3
11.0

11.8
10.2

10.0

17.1
15.2

12.8
11.0

10.2
1.3

4.0
5.7
8.0
9.2

6.0
5.6
5.8

2.2

9.4
7.8
7.0
7.6
7.0
8.3

9.3
Other 26,575 609 (2.3) 18,953 374 (2.0) 7,622 235 (3.1)
Missing 529 8 (1.5) 419 6 (1.4) 110 2 (1.8)
Standard of living index Bottom quintile 98,445 2,947 (3.0) 84,718 2,481 (2.9) 13,727 466 (3.4)

Table 2. Descriptive Information on the Analytic Sample Considered for the Health Behavior Analyses (1998–1999 INFHS)

Chewing (%)
Second quintile 102,665 2,605 (2.5) 88,937 2,193 (2.5) 13,728 412 (3.0)
Third quintile 103,598 2,216 (2.1) 89,871 1,845 (2.1) 13,727 371 (2.7)

Tobacco
Fourth quintile 110,000 2,119 (1.9) 96,272 1,816 (1.9) 13,728 303 (2.2)

10.9
27.0
20.4
10.5
24.2
22.5
22.3
23.7
17.1
11.8
10.0
8.9
19.9
18.7
8.6
10.9
24.1
29.7
25.2
20.0
15.5
9.6
13.3
14.7
15.9
21.4
19.0
Top quintile 114,498 1,940 (1.7) 100,771 1,689 (1.7) 13,727 251 (1.8)
Type of residence Large city 60,599 994 (1.6) 55,760 920 (1.6) 4,839 74 (1.5)
Small city 33,158 621 (1.9) 32,330 610 (1.9) 828 11 (1.3)

Smoking
Town 71,198 1,396 (2.0) 64,798 1,260 (1.9) 6,400 136 (2.1)

Non-Indigenous
Village/rural area 364,251 8,816 (2.4) 307,681 7,234 (2.4) 56,570 1,582 (2.8)

32.0
20.3

13.6
15.4
19.1
22.8
17.5
10.1

17.7
21.3
13.9

20.3
24.5
23.1
19.3
15.2

12.6
12.4
14.1
20.0
17.6
2.8

7.8

8.5
8.0

6.6

9.5
(%)
Total 529,206 11,827 (2.2) 460,569 10,024 (2.2) 68,637 1,803 (2.6)

237
2,376

6,226

6,945
131,566

46,321
21,249

98,389
43,560
78,299
19,957
18,818

34,982

11,659

44,137
48,021
50,828
57,100
65,163
36,037
19,717
38,829
133,683
195,303

211,426

170,666
265,249
DOI: 10.1371/journal.pmed.0030421.t001

Total
(n)
all indigenous and non-indigenous samples separately for using alcohol in the sample of indigenous populations were
mortality, smoking, drinking alcohol, and chewing tobacco 25%, 36%, and 26%, respectively, compared to 18%, 19%,

Use (%)
Alcohol
(Table 3); (3) an age-stratified model of all indigenous and and 9% for non-indigenous populations (Table 2). Indige-

9.3

2.8

5.7
8.0

7.0
6.3
6.1

2.2

8.8
7.3
7.9
7.2
9.0
26.1

19.8
13.1

10.7
12.3
13.9
11.3

11.5

16.4
24.7
16.9
16.9
13.7
11.4

13.0
11.4
non-indigenous samples for mortality (Figure 1); (4) a nous/non-indigenous differentials are substantial for smoking
stratified model of mortality for indigenous and non- and drinking. The OR related to being indigenous for

Chewing (%)
indigenous samples (Table 4); and (5) a stratified model of smoking was 1.47 (95% CI 1.40–1.55) and for drinking alcohol
alcohol and tobacco use for indigenous and non-indigenous was 2.67 (95% CI 2.52–2.82). The ORs are attenuated to 1.22

Tobacco
samples (Table 5). (95% CI 1.16–1.28) for smoking and 2.27 (95% CI 2.15–2.40)

19.0
35.6

9.7
13.0
29.0
22.4
12.8
25.6
27.6
24.0
25.9
19.3
13.3
11.3

20.9
18.7
29.9
17.7
25.8
31.1
26.4
22.5
17.2
10.6
15.7
15.0
18.0
23.3
21.0
for drinking after adjustment for standard of living. The
Results indigenous/non-indigenous differentials for tobacco chewing

Smoking
Differentials between Indigenous and Non-Indigenous are not substantial, especially after adjustment for standard
of living. Even after adjusting for standard of living, the
Groups

3.4

9.1

9.4
8.3

9.8

9.9
17.6
24.8

33.3
21.1

14.5
17.5
19.6
24.3
18.3
10.8

18.0
21.3
25.1

19.3
24.8
23.3
20.4
15.9

13.7
12.5
15.1
20.7
18.4
(%)
indigenous/non-indigenous differential is greater among
In the indigenous sample, the proportion of the total
women, than men, for both smoking and drinking (p , 0.001).
number of deaths in the total sample of individuals (alive and

295
3,056

6,482
36,735

53,416
24,121

50,456
87,649
21,741
19,952

35,304
19,125
15,762

55,003
265,249

149,939
152,045
221,391

115,704

231,498

56,821
59,569
62,409
68,182
38,930
20,189
42,304
200,561
301,984
Figure 1 shows the excess mortality in indigenous peoples

Total
dead) over the 2-y period was 2.6%, compared to 2.2% in the
across the different stages of the life course before and after

All

(n)
non-indigenous sample (Table 1). Table 3 presents differ-
entials in mortality and health behaviors between indigenous adjusting for gender, religion, urban/rural status, and stand-
ard of living index. No statistically significant differences

Divorced/separated
and non-indigenous populations, before and after adjusting

Married/partnered

Village/rural area
Non-indigenous
were observed between indigenous and non-indigenous

Bottom quintile
Second quintile
Subcategory

Fourth quintile
for indicators of socioeconomic circumstances. Indigenous

Post-graduate

Third quintile

Top quintile
groups for mortality in the age groups under 1 y and 45–64

Indigenous
peoples have higher mortality (odds ratio [OR] 1.33; 95%

Secondary

Large city
Small city
Christian
y; in the remaining age groups the mortality risk for

Illiterate
Primary

Missing
College
confidence interval [CI] 1.24–1.42) than non-indigenous

DOI: 10.1371/journal.pmed.0030421.t002
Muslim
Female

Widow

Higher
Single

Hindu

Other

Town

peoples. Adjusting for the standard of living index attenuates
the OR to 1.22 (95% CI 1.13–1.30). The mortality OR for
indigenous men was 1.41 (95% CI 1.29–1.54), while for
Total
Male
indigenous groups was consistently greater than that
observed for non-indigenous groups. As shown in Figure 1,
it is only after adjustment for household socioeconomic

Standard of living index

indigenous women it was 1.25 (95% CI 1.13–1.39), suggesting status that the mortality differentials for the age group under
that the indigenous/non-indigenous divide was larger for men 1 y for indigenous groups becomes substantially attenuated.

Type of residence
(p ¼ 0.04). This gender difference remained with adjustment This finding suggests that while there are likely to be

Marital status
for standard of living, although with weaker statistical differences in the determinants of the infant mortality (e.g.,

Education
Variable

Ethnicity

Religion
support (p ¼ 0.11). access and availability of public health measures and health-

Gender
Based on the response to the three questions, the care services) between indigenous and non-indigenous
proportions of individuals smoking, chewing tobacco, and groups, such differences seem to get largely accounted by
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Social Medicine in the 21st Century Social Medicine in the 21st Century

Indigenous Health and Socioeconomic Status Indigenous Health and Socioeconomic Status

Table 3. Unadjusted and Adjusted Indigenous and Non-Indigenous Differentials in Mortality and Tobacco and Alcohol Use Table 4. Gender and Socioeconomic Differentials in Mortality within Indigenous and Non-Indigenous Groups

Variable Group All Male Female Variable Subcategory Indigenous Non-Indigenous p-Value
Before After Before After Before After
Adjustment Adjustment Adjustment Adjustment Adjustment Adjustment Gender Male 1.00 1.00
Female 0.82 (0.74–0.91) 0.91 (0.87–0.95) 0.036
Standard of living index Bottom quintile 1.61 (1.33–1.95) 1.85 (1.72–2.00) 0.092
Mortality Non-indigenous 1.00 1.00 1.00 1.00 1.00 1.00 Second quintile 1.42 (1.18–1.72) 1.63 (1.51–1.76) 0.091
Indigenous 1.33 (1.24–1.42) 1.22 (1.13–1.30) 1.41 (1.29–1.54) 1.27 (1.16–1.39) 1.25 (1.13–1.39) 1.17 (1.05–1.29) Third quintile 1.31 (1.09–1.57) 1.43 (1.32–1.54) 0.190
Smoking Non-indigenous 1.00 1.00 1.00 1.00 1.00 1.00 Fourth quintile 1.13 (0.94–1.36) 1.22 (1.13–1.32) 0.223
Indigenous 1.47 (1.40–1.55) 1.22 (1.16 to 1.28) 1.38 (1.31–1.45) 1.16 (1.10–1.22) 1.67 (1.52–1.84) 1.43 (1.31–1.56) Top quintile 1.00 1.00
Tobacco chewing Non-indigenous 1.00 1.00 1.00 1.00 1.00 1.00
Indigenous 1.17 (1.12–1.22) 1.05 (1.00–1.10) 1.11 (1.06–1.17) 1.01 (0.96–1.06) 1.33 (1.25–1.42) 1.16 (1.08–1.25)
Alcohol use Non-indigenous 1.00 1.00 1.00 1.00 1.00 1.00 The ORs and 95% CIs in both models are conditional upon state-, district-, and local area–level random effects. Models additionally adjusted for religion and urban/rural status. p-Value
Indigenous 2.67 (2.52–2.82) 2.27 (2.15–2.40) 1.97 (1.87–2.08) 1.72 (1.63–1.81) 3.10 (2.80–3.43) 2.77 (2.52–3.05) denotes the statistical significance based on a test of interaction.
DOI: 10.1371/journal.pmed.0030421.t004

Adjusted models include variables related to gender, religion, urban/rural status, and standard of living for mortality, and, additionally, marital status and years of education for tobacco
and alcohol use. The ORs and 95% CIs in both models are conditional upon state-, district-, and local area–level random effects.
DOI: 10.1371/journal.pmed.0030421.t003
the average differences in economic well-being between
indigenous and non-indigenous groups. Indeed, attenuation
is observed in the indigenous mortality differentials across
most age groups.
Differentials within Indigenous and Non-Indigenous
Groups
Mortality. As shown in Table 4 there are substantial mortality
differentials by standard of living index within indigenous
groups, with the OR for mortality being 1.61 (95% CI 1.33–
1.95) for those in the bottom fifth of the standard of living
index compared to those in the top fifth. In non-indigenous
groups, the socioeconomic differential is greater, with the
bottom fifth 85% more likely to experience mortality than
the top fifth. The statistical evidence for a difference in the
relationship between standard of living and mortality
between indigenous and non-indigenous groups, however,
was not strong (Table 4). The results from the stratified
analysis of mortality (Table 4) were similar to those from
overall models with interaction terms specified between
indigenous status and standard of living. Similarly, while we
report results from a stratified analysis for each of the health
behaviors, we also tested for interactions between indigenous
Figure 1. Unadjusted and Adjusted Indigenous and Non-Indigenous
Differentials in Mortality across Life Stages
Adjusted models include variables related to gender, religion, urban/
rural status, and standard of living. The ORs and 95% CIs in both models
are conditional upon state-, district-, and local area–level random effects.
DOI: 10.1371/journal.pmed.0030421.g001
groups, a pattern different from those observed for tobacco Furthermore, the differential attenuation in the mortality
smoking and chewing. gap for indigenous groups across life stages may suggest that
the importance of socioeconomic status is greater at younger
status and socioeconomic position in pooled models, and the Discussion ages than older ones. This mirrors the magnitude of socio-
results were similar. economic differentials in mortality within India, which are
Smoking. Table 5 presents the adjusted socioeconomic Our analysis has two major findings related to patterns of also greatest in young age groups [56]. This result may reflect
differentials in tobacco use in indigenous and non-indige- health deprivation among indigenous peoples in India. First, mortality related to socio-environmental factors important
nous populations. Indigenous men are substantially more there are substantial differences in mortality and tobacco and
for childhood mortality (such as water availability and
likely to smoke than non-indigenous men. The gender alcohol consumption between indigenous and non-indigenous
overcrowded or inadequate housing), unequal access to
differential in smoking is, however, much stronger in non- peoples, with all values being disproportionately greater for
health care, and the patterning of health-related behaviors,
indigenous groups. Indigenous groups with no education are indigenous peoples. The differential distribution of demo-
including tobacco and alcohol use.
more likely to smoke than the most educated indigenous graphic factors as well as socioeconomic status in indigenous
and non-indigenous populations accounts for a substantial The excess use of tobacco and alcohol among indigenous
groups (OR 3.96; 95% CI 2.65–5.91), while those in the
portion of the health inequalities between these two groups. groups observed in this study is important in its own right
bottom fifth of the standard of living index are more than
The relative excess mortality among indigenous peoples is [40,41], as well as in terms of its contribution to accounting
twice as likely to smoke than those in the top fifth (95% CI
greatest for children and adults up to middle age; for adults for the excess mortality [57,58], though in this study we were
1.88–2.46). While the educational differentials in smoking are
over 45 y and for infants under 1 y the differences are unable to examine the latter directly since information on
similar in indigenous and non-indigenous populations, the
relatively small. As shown in Figure 1, a substantial tobacco and alcohol consumption was not ascertained for the
standard of living differentials in smoking are marginally
attenuation is observed in the indigenous mortality differ- deceased household members. The excess use of tobacco and
larger within non-indigenous groups.
entials across all age groups (and especially for infants) once alcohol in some indigenous populations has been shown to be
Tobacco chewing. Within indigenous and non-indigenous
we adjust for differences in household socioeconomic linked to the process of colonization [10] and increased
groups, there are substantial gender differences in tobacco
position. This finding favors an interpretation focused on influence of Western culture [11,14], which may be in direct
chewing, with men being much more likely to engage in this
the importance of socioeconomic status over an interpreta- conflict with indigenous models of normative social behavior.
behavior than women (Table 5). The gender differentials are,
tion that views indigeneity as an intrinsic risk factor. The greater indigenous/non-indigenous mortality differen-
however, stronger in non-indigenous groups than in indige-
nous groups. Indigenous people with secondary or less
education (i.e., primary or no education) are more likely to
chew tobacco than those with the most education. Similarly, Table 5. Gender and Socioeconomic Differentials in Tobacco and Alcohol Use within Indigenous and Non-Indigenous Groups
an increased likelihood of chewing tobacco use (OR 1.75; 95%
CI 1.57–1.95) is observed for those in the bottom quintile of Variable Subcategory Smoking Tobacco Chewing Alcohol Use
the standard of living index (Table 5). The pattern of Indigenous Non- p- Indigenous Non- p- Indigenous Non- p-
socioeconomic differentials in tobacco chewing is largely Indigenous Value Indigenous Value Indigenous Value
similar in indigenous and non-indigenous groups, with the
Gender Male 19.63 (17.98–21.43) 32.07 (30.77–33.43) ,0.001 2.81 (2.66–2.97) 4.47 (4.34–4.60) ,0.001 9.66 (8.87–10.52) 33.65 (31.62–35.81) ,0.001
actual differential being somewhat greater in non-indigenous
Female 1.00 1.00 1.00 1.00 1.00 1.00
groups. Education Illiterate 3.96 (2.65–5.91) 3.89 (3.49–4.34) 0.469 2.03 (1.48–2.79) 2.41 (2.17–2.67) 0.158 4.09 (2.55–6.55) 2.96 (2.60–3.37) 0.098
Alcohol use. Men, indigenous or non-indigenous, are more Primary 4.02 (2.69–6.00) 3.11 (2.80–3.47) 0.113 1.86 (1.36–2.56) 2.16 (1.95–2.39) 0.192 3.03 (1.89–4.85) 2.53 (2.22–2.87) 0.232
likely to drink alcohol than women. As with smoking and Secondary 2.67 (1.80–3.97) 2.27 (2.04–2.52) 0.214 1.70 (1.24–2.32) 1.75 (1.58–1.93) 0.432 2.27 (1.42–3.61) 1.99 (1.76–2.25) 0.300
Higher 2.31 (1.53–3.50) 1.43 (1.27–1.60) 0.013 1.35 (0.97–1.87) 1.36 (1.22–1.52) 0.482 1.53 (0.94–2.50) 1.25 (1.09–1.43) 0.210
tobacco chewing, the gender differentials in alcohol use are
College 2.20 (1.44–3.36) 1.20 (1.07–1.34) 0.003 1.25 (0.89–1.75) 1.18 (1.06–1.32) 0.386 1.78 (1.08–2.93) 1.08 (0.94–1.24) 0.028
greater in non-indigenous groups. The odds of alcohol use Post-graduate 1.00 1.00 1.00 1.00 1.00 1.00
are four times (95% CI 2.55–6.55) greater in indigenous Standard of Bottom quintile 2.15 (1.88–2.46) 2.73 (2.58–2.88) ,0.001 1.75 (1.57–1.95) 2.06 (1.96–2.17) 0.003 2.57 (2.23–2.96) 2.26 (2.11–2.42) 0.056
populations with no education and ; 2.5 times (95% CI 2.23– living index Second quintile 1.80 (1.58–2.04) 2.32 (2.20–2.44) ,0.001 1.52 (1.37–1.68) 1.83 (1.75–1.93) ,0.001 1.91 (1.67–2.19) 1.69 (1.58–1.80) 0.049
2.96) greater in indigenous populations in the bottom Third quintile 1.54 (1.37–1.73) 1.81 (1.72–1.90) 0.006 1.31 (1.19–1.44) 1.62 (1.54–1.69) ,0.001 1.59 (1.40–1.81) 1.32 (1.24–1.40) 0.004
Fourth quintile 1.37 (1.24–1.52) 1.45 (1.38–1.52) 0.172 1.17 (1.07–1.27) 1.37 (1.31–1.43) ,0.001 1.22 (1.08–1.38) 1.13 (1.07–1.20) 0.131
quintile of the standard of living index, compared to those Top quintile 1.00 1.00 1.00 1.00 1.00 1.00
with the most education and in the top quintile of the
standard of living index, respectively (Table 5). The standard
The ORs and 95% CIs in both models are conditional upon state-, district-, and local area–level random effects. Models additionally adjusted for age, marital status, and urban/rural status.
of living differentials within indigenous populations are p-Value denotes the statistical significance based on a test of interaction.
substantially larger than those observed in non-indigenous DOI: 10.1371/journal.pmed.0030421.t005

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Social Medicine in the 21st Century
tials in men than women may reflect the considerably higher
prevalence of tobacco and alcohol use in men than women
and thus their contribution to greater mortality differentials,
despite relative differences in these behaviors being greater
among women than among men.
An important second finding of this study is that there are
substantial heterogeneities in mortality and tobacco and
alcohol consumption within indigenous peoples. Differential
educational attainment and standard of living are major
producers of health-related heterogeneities even within
indigenous populations. This finding reiterates the impor-
tance of social and economic well-being in creating health
differences within indigenous groups, as well as between
indigenous peoples and other population groups. Whilst, in
general, the socioeconomic differentials within indigenous
groups are smaller than those observed in non-indigenous
groups they are still substantial. The presence of such
differentials draws attention to the need to consider such
heterogeneities within population groups that are seen as
having less favorable socioeconomic and health experiences.
Indeed, sometimes the comparison of the health of such
groups—whether indigenous or minority ethnic groups—
with the majority population can lead to indigenous group
membership (or minority ethnic group status) being taken as
a straightforward proxy for adverse socioeconomic circum-
stances. This can draw attention away from the considerably
important social differences within as well as between
population groups. The socioeconomic differentials observed
within indigenous groups also suggest that the indicators of
socioeconomic well-being such as educational attainment and
material assets have at least some common meaning within
indigenous groups as well as in the non-indigenous popula-
tion.
The findings of our study need to be considered alongside
the following limitations. The findings related to mortality
are likely to be influenced by recall bias of deaths (and of the
age of the dead) that occurred in the household [59]. While
this is expected to be a greater limitation for cause-specific
mortality analyses, the possible under-reporting of deaths
remains a concern [59], with under-reporting being possibly
greater for indigenous populations. Analyses of mortality
differentials based on household surveys may also raise
concerns related to sample sizes [60]. Consequently, caution
is necessary when drawing inferences about population-level
mortality estimates (in particular adult mortality estimates)
based on the data source used for this study. In support of the
mortality data, however, it is noted that the crude death rates
estimated from the INFHS closely approximates the crude
death rates obtained from more routine sources, such as the
Sample Registration System (SRS), which is a large-scale
demographic survey conducted in India that has historically
provided the annual estimates of birth rate, death rate, and
other fertility and mortality indicators at the national and
sub-national levels (http://www.censusindia.net/srs21.html; ac-
cessed on March 9, 2006). The crude death rate from INFHS
(covering roughly the period of 1997–1998) was 9.7 deaths per
1000 population compared with 8.9 from the 1997 SRS [23].
This finding, contrary to the expectations, actually suggests
that reporting of deaths may have been better in the INFHS
than in the SRS. The INFHS age-specific death rates were also
higher for most of the age groups, with one notable
68
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Indigenous Health and Socioeconomic Status
exception, the age group 0–4 y, where the INFHS estimate
is considerably lower than the SRS estimate.
Given the above, conclusions drawn from the mortality
analyses presented here should be restricted to descriptive
inferences on the underlying patterning of mortality differ-
ences between and within indigenous and non-indigenous
groups. Furthermore, while overall mortality patterns reflect
the general underlying health burden, cause-specific analysis
of mortality across indigenous and non-indigenous groups is
necessary to develop specific public health and medical
interventions.
Our analysis also does not cover all dimensions of socio-
economic status, and some of the apparent residual worse
mortality and health-related behavior could be due to
unmeasured aspects of socioeconomic position [61]. For
instance, since educational levels were not ascertained for
deceased individuals, we could not ascertain the contribution
of educational differences to the indigenous/non-indigenous
mortality divide, nor to the heterogeneities in mortality
within indigenous populations. Many studies have demon-
strated that incorporating additional measures of socio-
economic position into studies utilizing just one dimension
leads to greater differentials being demonstrated and
increased statistical explanation of variance and health
outcomes [62]. Consequently, what we report in this study
as the contribution of socioeconomic status in attenuating
the indigenous/non-indigenous health divide and the extent
of socioeconomic inequalities in health within indigenous
groups are likely to be underestimates of the true contribu-
tion of socioeconomic circumstances to explaining health
differentials between and within population groups [59]. It is,
however, possible that the socioeconomic measures consid-
ered in this study may not have the same meaning within
indigenous and non-indigenous peoples, leading to inad-
equate control for this determinant of health differences
between population groups [61].
With regards to the analysis of tobacco and alcohol
consumption, the survey data did not measure the levels of
consumption, or the type of alcohol or form of tobacco
smoked, as such limiting us to investigating overall preva-
lence. It is, however, likely that including type of tobacco or
alcohol consumed would only exacerbate the observed
indigenous/non-indigenous disparities in health behaviors.
For instance, bidi smoking and drinking locally produced
alcohol are likely to be more common amongst indigenous
groups. Finally, since the health behaviors were reported, we
are unable to ascertain the extent to which the observed
disparities reflect actual behavior and the degree to which
there are systematic reporting gaps.
Indigenous Population Groups in the Indian Context
The definition of indigenous peoples put forward by the
International Labor Organization in Convention 169, as well
as the recently revised World Bank Policy on indigenous
people, supports the application of the term ‘‘indigenous’’ to
the scheduled tribes in India [19,20]. However, the Govern-
ment of India has resisted the use of the term indigenous
when referring to the scheduled tribes on the grounds that it
is a practical impossibility to decide indigeneity after
centuries of ‘‘migration, absorption, and differentiation’’
[18]. As reflected in the ‘‘National Policy on Tribals’’ draft
[18], a formal recognition of the indigeneity of the scheduled
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1801 October 2006 | Volume 3 | Issue 10 | e421
tribes is also interpreted as contradictory to the overall spirit
underlying the recognition of the tribal populations [63],
which is to facilitate ‘‘assimilation’’ of the tribal population
into the country’s mainstream [18]. From a political stand-
point, it has been argued that official adoption of the term
‘‘indigenous’’ also legitimizes the potential for secession of
scheduled tribal areas from the Indian state [17]. Notwith-
standing the identification challenges related to ‘‘who is
indigenous,’’ the scheduled tribes in India approximately fit
the definition by Maybury-Lewis [16], who states, ‘‘Indigenous
peoples are defined as much by their relations with the state
as by an intrinsic characteristic that they may possess. They
are often considered to be tribal people in the sense that they
belong to small-scale pre-industrial societies that live in
comparative isolation and manage their own affairs without
the centralized authority of a state.’’ We would contend that
many of the same forces—historical and contemporary—that
lead to adverse socioeconomic and health consequences for
indigenous populations in other parts of the world [1,3–
7,10,11] apply to the scheduled tribe populations of India.
Conclusions
Our analysis presents evidence for excess mortality and
tobacco and alcohol use in the indigenous populations in
India. This excess mortality and tobacco and alcohol use,
however, is markedly attenuated once the average differences
in socioeconomic well-being between the indigenous and
non-indigenous groups are taken into account. Since differ-
ences in socioeconomic well-being are unlikely to account for
all the indigenous/non-indigenous differentials in health, the
question remains, what does the residual difference indicate?
Does it reflect unobserved confounding due to biological
predispositions? Does it reflect the effect of ‘‘racism’’? Recent
evidence from New Zealand emphasizes the importance of
discrimination in explaining the adverse health status of the
Maoris [64]; research on the role of discrimination in
accounting for indigenous/non-indigenous health differences
in India is absent, but may provide important insights into
explaining the residual differences in health status between
indigenous and non-indigenous groups. The presence of
socioeconomic inequalities in health even within indigenous
populations is a key finding of our study. The mortality
differentials by material standard of living within the
indigenous populations are similar to those seen within the
non-indigenous population. While there are critical issues
related to political and social marginalization that are central
to improving the health and wealth of indigenous popula-
tions in absolute terms (in addition to reducing the gap
between indigenous and non-indigenous groups), our find-
ings suggest that a focused approach to addressing inequal-
ities in social and economic well-being within and between
the indigenous and non-indigenous populations would
contribute to reducing health inequalities in a general
fashion. An effective application of such approaches is likely
to lead to decreasing relevance of the indigenous aspect of
the experience of scheduled tribal populations, in line with
the stated objectives of the Government of India.
Acknowledgments
SVS is supported by the National Institutes of Health Career
Development Award (NHLBI 1 K25 HL081275). We thank Shailen
Nandy for preparing an earlier version of the dataset used in this study.
iMedPub :: Thematic collections :: Volume 1
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Social Medicine in the 21st Century
Indigenous Health and Socioeconomic Status
We acknowledge the support of Macro International (http://www.
orcmacro.com) in providing us access to the 1998–1999 INFHS data.
Author contributions. SVS conceived the study and analyzed and
interpreted the data. GDS contributed to the analysis and inter-
pretation of the results. MS assisted with literature review and data
analysis. SVS wrote and edited the manuscript. GDS contributed to
the editing of the manuscript.
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health research. In: Kawachi I, Berkman LF, editors. Neighborhoods and
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54. Rasbash J, Steele F, Browne W, Prosser B (2005) A user’s guide to MLwiN
version 2.0. Bristol: Centre for Multilevel Modelling, University of Bristol.
Available: http://www.mlwin.com/download/userman_2005.pdf. Accessed
26 September 2006.
55. Altman DG, Bland JM (2003) Interaction revisited: The difference between
two estimates. BMJ 326: 219.
56. Subramanian SV, Nandy S, Irving M, Gordon D, Lambert H, et al. (2006)
The mortality divide in India: The differential contribution of gender, caste
and standard of living across the life course. Am J Public Health 96: 826–
833.
57. Gupta PC, Mehta HC (2000) Cohort study of all-cause mortality among
tobacco users in Mumbai, India. Bull World Health Organ 78: 877–883.
58. Gajalakshmi V, Peto R, Kanaka TS, Jha P (2003) Smoking and mortality
from tuberculosis and other diseases in India: Retrospective study of 43000
adult male deaths and 35000 controls. Lancet 362: 507–515.
59. Gakidou E, Hogan M, Lopez AD (2004) Adult mortality: Time for a
reappraisal. Int J Epidemiol 33: 710–717.
60. Timaeus I (1993) Demographic change in sub-Saharan Africa. Washington
(D. C.): National Academy of Sciences. 396 p.
61. Davey Smith G (2000) Learning to live with complexity: Ethnicity,
socioeconomic position, and health in Britain and the United States. Am
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62. Davey Smith G, editor (2003) Health inequalities: Lifecourse approaches.
Bristol: Policy Press. 548 p.
63. Kingsbury B (1998) Indigenous peoples in international law: A construc-
tivist approach to the Asian controversy. Am J Int Law 92: 414–457.
64. Harris R, Tobias M, Jeffreys M, Waldegrave K, Karlsen S, et al. (2006) Effects
of self-reported racial discrimination and deprivation on Maori health and
inequalities in New Zealand: Cross-sectional study. Lancet 367: 2005–2009.
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Editors’ Summary
Background. In many parts of the world the majority of the population
are the descendants of immigrants who arrived there within the last few
hundred years. Living alongside of them, and in a minority, are the so-
called indigenous (or aboriginal) people who are the descendants of
people who lived there in more ancient times. It is estimated that there
are 300 million indigenous people worldwide. They are frequently
marginalized from the rest of the population, their human rights are
often abused, and there are serious concerns about their health and
welfare. The state of health of the indigenous people of developed
countries such as the US and Australia has often been studied, and we
have a fairly clear idea of the kinds of problems these people face. Most
indigenous people, however, live in developing countries, and less is
known about their health.
India is the second-most populous country in the world, with an
estimated 1.1 billion inhabitants. An estimated 90 million indigenous
people live in India, where they are often referred to as ‘‘scheduled
tribes’’ or Adivasis. They live in many parts of the country but are much
more numerous in some Indian states than in others.
Why Was This Study Done? It has often been said that indigenous
people in India have worse health than other Indians, though no figures
have been compiled to confirm these claims. The researchers wanted to
establish whether it is simply an issue of indigenous people being poorer
than other Indians—poverty being well known as a cause of disease—or
whether being indigenous is, in itself, a health risk. The researchers also
wanted to establish whether there are health inequalities within
indigenous groups, and if these differences also followed a socio-
economic patterning.
What Did the Researchers Do and Find? They used figures collected in
the 1998–1999 Indian National Family Health Survey. When this survey
was conducted, it was noted whether people were considered to be
members of scheduled tribes. The researchers also knew, from the
survey, about the income of the families, their death rates, and whether
they drank alcohol or smoked or chewed tobacco. They found that
indigenous people had higher death rates than other Indians. They made
statistical calculations to account for differences in standard of living, and
iMedPub :: Thematic collections :: Volume 1
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Social Medicine in the 21st Century
Indigenous Health and Socioeconomic Status
this substantially reduced the difference in death rate among indigenous
groups, but an indigenous person was still 1.2 times more likely to die
than a non-indigenous person with the same standard of living.
Indigenous people were also more likely to drink alcohol and smoke
tobacco, and here again, differences in standard of living accounted for a
substantial portion of the differences. Importantly, the researchers’
analysis showed a strong socioeconomic patterning of health inequal-
ities within the indigenous population groups: the health differences
between the poorest and richest indigenous groups were similar in scale
to the differences between the poorest and richest non-indigenous
groups.
What Do These Findings Mean? The authors consider their finding that
there is a socioeconomic gradient in mortality and health behaviors
among indigenous people to be an important result from the study. The
socioeconomic marginalization of indigenous people from the rest of
Indian society does seem to increase their health risks, and so does their
use of alcohol and tobacco. However, if their standard of living can be
improved there would be major benefits for their health and welfare.
Additional Information. Please access these Web sites via the online
version of this summary at http://dx.doi.org/XXXXXXX.
A useful discussion of the term ‘‘indigenous people’’ (with links to
documents about international agreements intended to improve their
human rights) may be found on Wikipedia. (Wikipedia is an internet
encyclopedia that anyone can edit.)
� Survival International is a human rights organization that campaigns
for the rights of indigenous peoples, helping them preserve their land
and culture.
� The charity Health Unlimited also works with indigenous people and
its Web site includes links to recent studies and conferences.
� A news item from the BBC describes a recent investigation into the
health of indigenous people worldwide.
� The World Health Organization has produced a number of reports on
the health of indigenous people
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Social Medicine in the 21st Century
Insights into the Management of Emerging
Infections: Regulating Variant Creutzfeldt-Jakob
Disease Transfusion Risk in the UK and the US
Maya L. Ponte
Department of Anthropology, History, and Social Medicine, University of California San Francisco, San Francisco, California, United States of America
Funding: Support from the US
National Institutes of Health (NIH)
through the DeWitt Stetten Jr.
Memorial Fellowship was provided
jointly by the Office of History and
the National Institute of Neurological
Disorders and Stroke (NINDS).
Additional support came from the
US National Science Foundation
(NSF), the University of California
presidential fellows program, and
the Institute for Global Conflict and
Cooperation (IGCC) studies
dissertation fellowship program. The
funders had no role in study design,
data collection and analysis, decision
to publish, or preparation of the
manuscript.
Competing Interests: The authors
have declared that no competing
interests exist.
Academic Editor: William Sibbald,
Sunnybrook and Women’s College
Health Sciences Centre, Canada
Citation: Ponte ML (2006) Insights
into the management of emerging
infections: Regulating variant
Creutzfeldt-Jakob disease
transfusion risk in the UK and the US.
PLoS Med 3(10): e342. DOI: 10.1371/
journal.pmed.0030342
Received: January 9, 2006
Accepted: June 8, 2006
Published: October 24, 2006
DOI:
10.1371/journal.pmed.0030342
Copyright: � 2006 Maya L. Ponte.
This is an open-access article
distributed under the terms of the
Creative Commons Attribution
License, which permits unrestricted
use, distribution, and reproduction
in any medium, provided the
original author and source are
credited.
Abbreviations: BSE, bovine
spongiform encephalopathy; sCJD,
sporadic Creutzfeldt-Jacob disease;
vCJD, variant Creutzfeldt-Jakob
disease
* To whom correspondence should
be addressed. E-mail: maya.ponte@
ucsf.edu
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PLoS MEDICINE
ABSTRACT
Background Introduction
Variant Creutzfeldt-Jakob disease (vCJD) is a human prion disease caused by infection with the Avian influenza is the latest in a long line of zoonoses, or
agent of bovine spongiform encephalopathy. After the recognition of vCJD in the UK in 1996, diseases transmissible from animal to human, to raise the
many nations implemented policies intended to reduce the hypothetical risk of transfusion specter of an impending epidemic of human-to-human trans-
transmission of vCJD. This was despite the fact that no cases of transfusion transmission had yet mission [1]. Solidarity amongst nations in their approach to this
been identified. In December 2003, however, the first case of vCJD in a recipient of blood from a
threat is deemed to be one key to a successful response [2]. The
vCJD-infected donor was announced. The aim of this study is to ascertain and compare the
other is careful use of scientific data to sculpt a rational strategy
factors that influenced the motivation for and the design of regulations to prevent transfusion
[3]. The two are felt to go hand in hand, as it is often inferred that
transmission of vCJD in the UK and US prior to the recognition of this case.
a reliance on science will lead to appropriate and harmonious
Methods and Findings policies amongst nations.
As efforts are already being made in many countries to
A document search was conducted to identify US and UK governmental policy statements
protect against an H5N1 epidemic, now is a good time to reflect
and guidance, transcripts (or minutes when transcripts were not available) of scientific advisory
on whether or not the use of science necessarily leads to
committee meetings, research articles, and editorials published in medical and scientific
agreement amongst nations and what factors, other than
journals on the topic of vCJD and blood transfusion transmission between March 1996 and
science, play a role in shaping disease management policy. In
December 2003. In addition, 40 interviews were conducted with individuals familiar with the
this vein, a case study of variant Creutzfeldt-Jakob disease
decision-making process and/or the science involved. All documents and transcripts were
coded and analyzed according to the methods and principles of grounded theory. Data (vCJD) is illustrative. vCJD is a prion disease that originated
showed that while resulting policies were based on the available science, social and historical from the transfer of bovine spongiform encephalopathy (BSE),
factors played a major role in the motivation for and the design of regulations to protect or ‘‘mad cow disease,’’ from cattle to humans [4]. Almost
against transfusion transmission of vCJD. First, recent experience with and collective guilt immediately after the disease was first reported in 1996,
resulting from the transfusion-transmitted epidemics of HIV/AIDS in both countries served as a concerns were raised about the possibility of transmission of
major, historically specific impetus for such policies. This history was brought to bear both by the disease between humans through blood transfusion [5]. The
hemophilia activists and those charged with regulating blood products in the US and UK. risk was purely hypothetical in nature, as there was no evidence
Second, local specificities, such as the recall of blood products for possible vCJD contamination of transfusion transmission having taken place,. The first
in the UK, contributed to a greater sense of urgency and a speedier implementation of probable case of transfusion-transmitted vCJD would not be
regulations in that country. Third, while the results of scientific studies played a prominent role identified until late 2003 [6], the second in 2004 [7]. And yet,
in the construction of regulations in both nations, this role was shaped by existing social and
many nations implemented regulations aimed at reducing the
professional networks. In the UK, early focus on a European study implicating B-lymphocytes as
risk of such transmission while the risk was still hypothetical in
the carrier of prion infectivity in blood led to the introduction of a policy that requires universal
nature. This study inquires into the factors that influenced the
leukoreduction of blood components. In the US, early focus on an American study highlighting
design of regulations to reduce the risk of transfusion trans-
the ability of plasma to serve as a reservoir of prion infectivity led the FDA and its advisory
mission of vCJD in the UK and the US before December 2003.
panel to eschew similar measures.
Prion diseases are fatal human and animal neurological
Conclusions disorders defined by their transmissibility and characteristic
neuropathology [8]. Scrapie, a prion disease of sheep, was first
The results of this study yield three important theoretical insights that pertain to the global
described more than 200 years ago [9]. In the 1950s, scrapie
management of emerging infectious diseases. First, because the perception and management of
spread from Europe to many other parts of the world,
disease may be shaped by previous experience with disease, especially catastrophic experience,
there is always the possibility for over-management of some possible routes of transmission and including the US. The most common human form of prion
disease is sporadic Creutzfeldt-Jakob disease (sCJD). The
relative neglect of others. Second, local specificities within a given nation may influence the
temporality of decision making, which in turn may influence the choice of disease management incidence of sCJD is approximately one out of 1 million
policies. Third, a preference for science-based risk management among nations will not people per year, in each country around the world [10].
necessarily lead to homogeneous policies. This is because the exposure to and interpretation of Certain populations are also plagued by familial forms of
scientific results depends on the existing social and professional networks within a given nation. prion disease, including Gerstmann-Straussler syndrome [11]
Together, these theoretical insights provide a framework for analyzing and anticipating potential and familial CJD [12].
conflicts in the international management of emerging infectious diseases. In addition, this study CJD was first perceived as an infectious threat to developed
illustrates the utility of qualitative methods in investigating research questions that are difficult to nations when contaminated human growth hormone and dura
assess through quantitative means. mater grafts transmitted the disease to more than 250
individuals in the 1980s and 1990s [13]. However, it was the
The Editors’ Summary of this article follows the references. emergence of the BSE epidemic among British cattle in 1986,
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vCJD and Transfusion
and the transmission of BSE to humans in the form of vCJD [14],
that provided the major impetus to develop coherent disease
management policies in many nations. So far, more than 177
individuals have succumbed to vCJD, all but 21 of them UK
residents [15]. Only one US resident, who spent much of her
childhood in the UK, has been diagnosed with the disease [15].
The sense of urgency that accompanied vCJD was felt most
strongly in the UK, where the number of cattle diagnosed
with BSE had topped 170,000 by 1997 [16]. Some biostatis-
ticians estimated that this was just the tip of the iceberg,
representing only a fraction of the actual number of cases
[17]. The US did not detect BSE in its cattle herds until 2003
[18]. And yet, vCJD became a concern in the US due to the
number of US military troops stationed in the UK during the
peak of the BSE epidemic and the volume of travel between
the two countries [19].
Thus, US and UK regulatory agencies convened meetings of
their scientific advisory committees to evaluate the literature,
consider what was known about the disease, and debate an
effective means of preventing further spread. Both nations
quickly identified potential transfusion transmission of vCJD
as a risk that required regulation. In assessing this risk, the cost
of limiting the blood supply was weighed against the potential
harm of a blood-borne vCJD epidemic. Both nations, in
parallel fashion, ultimately chose to restrict certain portions of
the donor pool. The US and UK, however, developed strikingly
different positions regarding the removal of white blood cells
from blood components as a strategy for reducing vCJD
transmission risk. The process of removing white blood cells
from blood components is referred to by a variety of terms,
including leucocyte depletion, leucodepletion, leukocyte
reduction, and leukoreduction. The UK determined that
leukoreduction would likely reduce the transmission risk,
leading to a policy of universal leukoreduction. In the US, on
the other hand, it was felt that leukoreduction would have a
negligible effect on transmission risk and therefore did not
merit implementation for this purpose. Despite this differ-
ence, both US and UK regulatory agencies presented their
strategies as grounded in scientific evidence.
The questions that motivated this investigation were: (1)
How did transfusion transmission of vCJD become a
prominent concern of regulatory agencies in the US and
UK? (2) What role did science play in deliberations concern-
ing appropriate regulatory policy in each country? (3) What
non-scientific factors influenced the regulatory process in
each country? (4) And finally, if both the US and UK carried
out their deliberations in a science-based manner, how did
their processes result in policies that are parallel with respect
to sourcing of plasma but incongruous with respect to
leukoreduction of blood components?
The goal of qualitative research is the development of
concepts that aid in the understanding of social phenomena
[20]. As such, the goal of this study is not to ‘‘prove’’ or
‘‘verify’’ a testable hypothesis, but to provide a set of
theoretical insights that illuminate the processes involved in
the management of emerging infectious diseases.
Methods
Initial Data Collection
The data for this paper are part of a larger study on prion
disease in the US and UK that was conducted between October
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Social Medicine in the 21st Century
Figure 1. UK Government Documents
Searches conducted with results returned and excluded at each step.
DOI: 10.1371/journal.pmed.0030342.g001
2001 and July 2005. For this subsection of the study, a
background document search was conducted to identify US
and UK governmental announcements, policy statements,
documentation of governmental scientific advisory committee
meetings (including those of the US Food and Drug Admin-
istration Transmissible Spongiform Encephalopathy Advisory
Committee, the US Department of Health and Human Services
Blood Safety and Availability Committee, the UK Spongiform
Encephalopathy Advisory Committee, the UK Advisory Com-
mittee on the Microbiological Safety of Blood and Tissues for
Transplantation, and the UK Committee on the Safety of
Medicines), research articles, and editorials published on the
topic of vCJD and blood transfusion transmission between the
identification of vCJD (March 1996) and the identification of
the first likely case of transfusion-transmitted vCJD (December
2003). When transcripts of advisory committee meetings were
available, transcripts were always analyzed in preference to
minutes or summaries. When transcripts were not available,
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vCJD and Transfusion
minutes, summaries, and other supporting documentation
were analyzed. All document searches were restricted to the
period from March 1, 1996, to December 31, 2003, unless
otherwise specified.
UK governmental documents pertaining to the regulation
of vCJD with respect to the blood supply were identified
through online sources (Figure 1). The official Spongiform
Encephalopathy Advisory Committee Web site (http://www.
seac.gov.uk/papers/papers.htm) maintains archives of SEAC
meetings, from October 1997 onward. A search of the text of
minutes or summaries (when minutes were not available) of
the meetings that occurred between October 1997 and
December 2003 for the term ‘‘blood’’ yielded 20 results. Six
of the identified meetings were excluded from analysis
because the discussion did not pertain to human blood
products or blood transfusion (for example, the spreading of
bovine blood on fields as fertilizer). All documentation
available on the Web site from the remaining 14 meetings
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Figure 2. US Government Documents
Searches conducted with results returned and excluded at each step.
DOI: 10.1371/journal.pmed.0030342.g002
was included in the analysis. A manual search of the scanned
documents dating from March 1, 1996, or later contained
within the BSE Inquiry Web site Yearbook section (http://
www.bseinquiry.gov.uk/evidence/yb/index.htm), comprised of
primary evidence gathered during the inquiry, led to the
identification of nine additional documents in which blood
transfusion was discussed in relation to vCJD. These docu-
ments pertained to meetings of SEAC and other committees,
including three meetings of COHASE (Committee on the
Human Aspects of Spongiform Encephalopathies).
A search of the Government News Network site
(www.gnn.gov.uk), a repository for press releases and other
public documents of UK governmental departments, using
the terms ‘‘variant CJD blood’’ and selecting ‘‘all words’’ led
to the identification of 31 documents relating to the topic
between March 1996 and December 2003. After duplicates
were excluded, 12 items remained. One was a summary of a
SEAC meeting that had already been identified in a previous
search, leaving 11 unique documents. Two of the eleven
documents identified were summaries of meetings of the
Advisory Committee on the Microbiological Safety of Blood
and Tissues for Transplantation (MSBT). An advanced search
of the Department of Health Web site (www.dh.gov.uk/
AdvancedSearch/fs/en) of all documents from March 1996 to
December 2003 for all of the words ‘‘variant CJD blood’’
returned ten documents, eight of which had already been
identified in the previous search and two of which were newly
identified and included in the analysis.
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vCJD and Transfusion
The Medicines and Healthcare Products Regulatory Agency
(MHRA) of the UK Department of Health maintains archives
of meeting minutes of the Committee on Safety of Medicines
(CSM) from January 1998 onward at its Web site (http://www.
mhra.gov.uk). A search of the minutes of all meetings through
December 2003 for the term ‘‘CJD’’ led to the identification
of 18 documents. Minutes were included in the analysis if the
documented discussion pertained to vCJD. All documents
met this criterion and were included in the analysis.
US governmental documents pertaining to the regulation
of the vCJD transfusion risk were identified through several
online sources (Figure 2). A search of the text of the agendas
of archived TSEAC meetings on the FDA dockets Web site
(http://www.fda.gov/ohrms/dockets/) for the term ‘‘blood’’ led
to the identification of 11 meetings. Documents were
included in the analysis if they dealt with the topic of
transfusion transmission of vCJD. All of the meetings
identified met this criterion. Full transcripts were available
for analysis of all 11 meetings. Also at the FDA dockets Web
site, the agendas and transcripts of archived Blood Products
Advisory Committee (BPAC) meetings were searched for the
terms/phrases ‘‘vcjd’’, ‘‘variant cjd’’, or ‘‘variant creutzfeldt’’,
leading to the identification of 16 meetings that included at
least one instance of one of these terms. One was a joint
meeting with TSEAC and was thus a duplicate of a document
already identified. Three meeting transcripts were excluded
from analysis because the mention of vCJD was incidental to
the discussion of another topic. In sum, the BPAC archives
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Social Medicine in the 21st Century
Figure 3. Scientific Publications, Editorials, and Reviews
Searches conducted with results returned and excluded at each step.
DOI: 10.1371/journal.pmed.0030342.g003
search led to the identification of 12 additional meeting
transcripts that were included in the analysis. While the
dockets Web site is inclusive of meetings from January 1997
to the present, searches were restricted to those meetings
occurring before December 2003.
A search of the text of transcripts of archived Blood Safety
and Availability Committee (BSAC) meetings on the BSAC
Web site (http://www.hhs.gov/bloodsafety/) for the phrase
‘‘variant CJD’’ led to the identification of 16 meetings at
which vCJD was mentioned. Three of the meeting transcripts
were excluded from analysis because the mention of vCJD was
brief and incidental to another topic of discussion. The
remaining 13 meeting transcripts were analyzed as data. A
search of guidance documents published by the Center for
Biologics Evaluation and Review (CBER) of the FDA
(www.fda.gov/cber/guidelines.htm) using the terms ‘‘variant
CJD blood’’ led to the identification of 12 documents. After
duplicates were excluded, ten items remained and were
included in the analysis.
Publications in scientific and medical journals related to
blood transfusion and vCJD, CJD, or leukoreduction were
identified by searching the National Library of Medicine’s
MEDLINE database using PubMed (Figure 3). A PubMed
search for the text words ‘‘CJD’’ or ‘‘Creutzfeldt-Jakob’’ and
‘‘blood’’ identified 162 items that were published before 31
December, 2003. Documents were excluded from analysis if
they were in a language other than English or if they were of a
topic that was considered to be unrelated to CJD or vCJD and
blood infectivity or blood transfusion risk. These criteria led
to the exclusion of 45 items from analysis. A PubMed search
for the phrases ‘‘universal leucocyte depletion’’ or ‘‘universal
leukocyte depletion’’ or ‘‘universal leukoreduction’’ or
‘‘universal leukocyte reduction’’ yielded 38 results that were
published before 31 December, 2003. Documents were
excluded from analysis if they had already been identified
in a previous search or if they were of a topic involving an
aspect of universal leukoreduction that was considered to be
irrelevant to the analysis. These criteria led to the exclusion
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vCJD and Transfusion
of eight documents. In sum, a total of 147 unique scientific
articles, scientific reviews, policy reviews, editorials, and
commentaries were included in the analysis.
Selection of Participants
Forty interviews were conducted with individuals familiar
with the decision-making process in the US or the UK. The
goal was to target the individuals who were most knowledge-
able about the way decisions were made regarding the
management of vCJD in each country. Situational, rather
than demographic, representativeness was desirable. Because
some decisions and recommendations were made in the
course of advisory committee meetings and others within the
agencies, it was decided that a situationally representative
sample would include members of US and UK advisory
committees as well as relevant government agencies. For
purposes of simplification, only the advisory committee that
was most influential in determining the course of vCJD
management with respect to the blood supply, as judged by
document review, was targeted in each country. In the US,
this was the Transmissible Spongiform Encephalopathy
Advisory Committee (TSEAC), and in the UK this was the
Spongiform Encephalopathy Advisory Committee (SEAC).
In the US, all government employees who participated in
this portion of the study were employed by the Department
of Health and Human Services (DHHS). In the UK, the
government employees who were recruited for interview
came from the Department of Health as well as the National
Blood Service for England and Wales and the Scottish
National Blood Transfusion Service. Recruitment was con-
ducted in a stepwise fashion with the goal of recruiting
approximately equal numbers of participants from the US
and UK, with roughly twice as many advisory committee
members as government employees. First, 20 individuals who
were members of TSEAC or SEAC or who were government
agency employees involved in the management of vCJD were
invited to participate in the study. These individuals were
selected based on a number of considerations, including the
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time period during which they served on the government
advisory committee or in the government, their educational
background, their current position, and information pertain-
ing to their contributions that was derived from background
documents. Specifically, individuals were recruited to repre-
sent different backgrounds and to cover critical periods of
time in the decision-making process. Individuals were also
recruited based on the importance of the contributions they
made to the decision-making process as determined by the
document review. During interviews, other individuals
important to the decision-making process were identified
and further contacts were made. While most of these
additional contacts were also members of the advisory
committees or government employees, four were scientists
who were knowledgeable about the decision-making process
or the science involved, though they did not officially serve on
advisory committees. In this way, recruitment and data
collection was an iterative process.
Of the 14 current or former members of the UK Spongi-
form Encephalopathy Advisory Committee who were invited
to participate in the study, 12 were ultimately interviewed. Of
the members of SEAC who participated, nine were university
professors. Six held advanced scientific degrees, three held
medical degrees, and one held a non-medical, non-scientific
degree. Of the three who were not university professors, two
held degrees in veterinary medicine, one with experience in
private practice and the other with experience in research. Of
the two who declined to participate in the study, one was a
university professor with an advanced scientific degree and
the other was a university professor with a degree in
medicine.
Of the 13 current or former members of the US Trans-
missible Spongiform Encephalopathy Advisory Committees
contacted, 12 agreed to participate and were included in the
study. Of the 12 who ultimately participated, six were
professors at research universities. Of these, three held a
medical degree and three held advanced scientific degrees.
Five of the participants were researchers at government
agencies, one with a degree in medicine, two with advanced
scientific degrees, and two with veterinary degrees. One was a
representative from a consumer rights organization with a
degree in medicine. The individual who declined to partic-
ipate was a university professor with a medical degree.
All six of the current or former employees of UK
government agencies (Department of Health, National Blood
Service for England and Wales, and the Scottish National
Blood Transfusion Service) who were asked to participate
agreed to be interviewed. Three held medical degrees, two
held advanced scientific degrees, and one held a non-medical,
non-scientific degree. Four had more than 20 years’ experi-
ence in UK government agencies, and two had fewer than 20
years’ experience.
Of the seven current or former employees of US govern-
ment agencies (Department of Health and Human Services)
that were invited to participate, six agreed to be interviewed.
Of the six who participated, four held degrees in medicine
and two held advanced scientific degrees. Half had more than
20 years’ experience in government, and half had less than 20
years’ experience in government. The one who did not
participate had a medical degree and more than 20 years’
experience in government.
Four individuals with advanced scientific degrees who were
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vCJD and Transfusion
not governmental employees or scientific advisers were
identified by members of SEAC or TSEAC as knowledgeable
about the decision-making process and were also invited to
participate. All four ultimately participated. Three were
professors in the UK, and one was a professor in the US.
The final tally of participants included six current or
former employees of UK government agencies (Department
of Health, National Blood Service for England and Wales, and
the Scottish National Blood Transfusion Service) and six
current or former employees of US government agencies
(Department of Health and Human Services), 12 current or
former members of the UK Spongiform Encephalopathy
Advisory Committee, 12 current or former members of the
US Transmissible Spongiform Encephalopathy Advisory
Committee, and four scientists who belonged to neither
group.
Interviews
Most interviews were conducted in person at a site that was
convenient for the interviewee. A small number of interviews
were conducted on the phone. In a few cases, more than one
interview was required to cover all the topics. The interviews
were conducted in an open-ended, semi-structured manner, a
technique common in ethnographic research [21]. While
there was no specific order to the questions that were asked, it
was ensured that the interview would cover the four topics
listed at the end of the introduction. Interviews were
recorded and transcribed verbatim.
Analysis
All data, including interview transcripts, transcripts or
minutes of advisory committee meetings, agency announce-
ments, and scientific literature, were analyzed using the
general principles of grounded theory [22,23]. Grounded
theory is a qualitative methodology that allows for the study
of topics in medicine and policy that are difficult to
investigate through deductive, quantitative mechanisms. For
example, researchers have used variations of grounded theory
to ask why people delay seeking care after a heart attack [24]
and how physicians and nurses decide whether to report a
medical error [25].
Grounded theory focuses on uncovering the social pro-
cesses and conditions that lie behind the phenomena in
question and following their consequences and effects. It
offers a systematic process through which concepts can be
developed inductively. Rather than beginning with a hypoth-
esis, the researcher begins with a set of questions. Codes are
then generated through the labeling of concepts, and the
concepts are grouped into categories. Conceptual categories
are then refined in terms of their properties and variations
through the analysis of further data. Connections between
categories are labeled through a process referred to as axial
coding, eventually forming the basis for constructing major
categories.
Specifically, data analysis proceeded as follows. First, data
were stratified by country (US versus UK), source (regulatory,
scientific advisory committee, etc.), and regulation strategy
under discussion (leukoreduction, deferral of donors, etc.).
Descriptive codes were then developed based on the type of
information cited (scientific, experiential, etc.), the origin of
the material, and the role it played in the consideration of
various risks and policy interventions. Through a comparison
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of the resulting codes, numbering more than 100, 22 major
categories were derived. Categories developed in the analysis
of data from documents were compared to those developed
through the analysis of interview data, allowing for cross-
validation between the categories derived from different
types of data. As a check on the validity of the author’s
interpretations, one respondent from each of the five groups
interviewed (members of SEAC, members of TSEAC, UK
government employees, US government employees, and
other) was consulted regarding the appropriateness of the
categories that pertained to his or her participant group.
From the resulting final categories, a series of theoretical
insights were derived by the author, three of which will be
described in this paper.
Results
Existing Scientific Evidence and Uncertainty
Government agency employees and scientific advisors from
both the US and UK were quick to point to a scientific basis
for the concern about transfusion transmission of vCJD. They
also pointed to the uncertainty, however, that accompanied
the interpretation of the evidence. Prior to the appearance of
vCJD, several studies had detected infectivity in the blood of
rodents with prion disease [26–28]. These data, along with the
growing number of human growth hormone and dura mater
transmitted cases of sCJD [29,30], led to the development of
concern that sCJD could be transmissible through blood
transfusion [28,31]. Several countries, including the US,
instituted policies aimed at preventing the transmission of
sCJD through blood [32]. Concern about this route of
transmission, however, was mitigated by epidemiological
studies that reported no association between blood trans-
fusion and sCJD [33–35] and surveillance studies that failed to
detect cases of sCJD in frequent users of blood products, such
as people with hemophilia [36]. Despite the reassuring
evidence on sCJD, vCJD was viewed as an entirely new disease
with potentially concerning properties. Unlike sCJD, infec-
tivity was detected in the lymphoreticular tissue, such as
tonsil, appendix, and lymph nodes, of patients with vCJD
[37,38]. Because this pattern was similar to that found in
rodents with prion disease, it led to speculation that vCJD,
like rodent-adapted prion disease, could be transmissible
through blood. There was no direct evidence, however, to
implicate the blood of individuals with vCJD as infectious.
The concern was therefore considered hypothetical in nature.
The weight granted to this hypothetical concern derived in
part from the uncertainty surrounding the magnitude of the
vCJD epidemic. With no ante-mortem diagnostic test capable
of detecting prion disease in humans, it was impossible to
assess the number of individuals infected. The unknown, yet
potentially lengthy, incubation period made this number
difficult to estimate. As a result, early predictions of the size
of the vCJD epidemic ranged from as few as 75 people to as
many as 13.7 million people [39,40].
Donor Selection Criteria: The Influence of the HIV
Experience in the US
The existing prion disease science and the uncertainty
surrounding the vCJD epidemic, however, were not the only
factors that led to a focus on transfusion as a potential
transmission risk of vCJD. All but one of the US government
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agency employees interviewed stated that if it had not been
for past experience with HIV, and to a smaller extent
hepatitis C, it is unlikely that the issue of transfusion
transmission of vCJD would have garnered so much attention.
The single employee who did not support this position had
not participated directly in the management of HIV at the
agency. According to the remainder of the government
employees interviewed, the history of HIV/AIDS is something
that had come to haunt US regulatory agencies, especially the
Food and Drug Administration (FDA). This stems from a
decision made by the FDA in 1983 not to call for removal
from the market of plasma products from donors with AIDS
[41]. After a widespread epidemic of transfusion trans-
missions ensued, the FDA was called to task for this decision
by hemophilia activists, by the US Congress, and by various
news organizations. One US government employee suggested
that when it came to regulating blood, the fallout from HIV/
AIDS continues to affect decision-making at the agency
‘‘every minute of every day.’’
Along these lines, half of the US government agency
employees also mentioned the influence of the Institute of
Medicine (IOM) report on HIV transmission through blood
and blood products. This report, published in 1995, a year
before vCJD was discovered, recommended that a precau-
tionary stance be taken with regard to potential future
threats to the blood supply [41]. Uncertainty, the report
claimed, should not be an excuse for inaction, especially when
it came to the efforts by the FDA to regulate blood and blood
products.
This history loomed large as the DHHS brought questions
about the potential transmissibility of vCJD through blood to
the Blood Products Advisory Committee (BPAC), the Trans-
missible Spongiform Encephalopathy Advisory Committee
(TSEAC), and the Blood Safety and Availability Committee
(BSAC). In addition, there was a heightened state of concern
and political activism within the hemophilia community due
to recent experience with HIV/AIDS. Tens of thousands of
people with hemophilia had contracted the disease through
contaminated plasma products, and the community was wary
of another threat to transfusion safety.
According to all but one of the US government agency
employees interviewed, hemophilia activists played a major
role in ensuring that the concern about vCJD transfusion
transmission became a focus at the agency. They did this by
writing letters, arranging meetings with staff, and attending
and speaking at advisory committee meetings. This contention
is supported by government documents [19,42,43] as well. The
single US government employee who did not feel that
hemophilia activists played a major role in ensuring that the
concern about vCJD transfusion transmission became a focus
at the agency was the same employee who felt that the HIV/
AIDS experience had not influenced the management of vCJD.
Three-quarters of the members of TSEAC who were
interviewed expressed their belief that the recent experience
with transfusion transmission of HIV/AIDS played a signifi-
cant role in creating concern about the hypothetical risk of
transfusion transmission of vCJD. They felt that the impas-
sioned speeches of hemophilia activists at advisory committee
meetings influenced the direction of the discussion and the
recommendations made. In addition, a few members of
TSEAC were influenced by their personal experience in
advising on blood policy during the HIV epidemic.
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The first strategy that was considered by the FDA and its
TSE advisory committee for reducing the exposure to vCJD
through the blood supply was to disqualify donors who had
spent time in the UK and other countries in which BSE had
been reported [19]. This strategy, however, conflicted with the
goal of maintaining an adequate blood supply. As a result,
discussion at advisory committee meetings centered on
balancing the potential benefit achieved through donor
exclusion criteria with the potential risk of reducing the
blood supply [19,43,44].
Blood collection organizations presented the advisory
committees with information and projections regarding the
effects of various donor selection criteria on the blood
supply. Based on a survey, the American Red Cross (ARC)
estimated a loss of 11.7% in blood donations if everyone who
visited the UK between 1984 and 1990 was excluded [19].
Representatives of the ARC expressed their concern that
recruitment efforts would not be able to make up for such a
loss. The American Association of Blood Banks (AABB),
estimating a loss of 1.4 million to 2 million units each year,
projected devastating problems for the blood supply [19].
Members of the hemophilia community attended advisory
committee meetings and demanded that maintaining an
adequate supply should not overshadow safety concerns
[19,42,43,45]. They pointed out that such concerns had
prevented the appropriate management of HIV with respect
to the blood supply. An example of this type of speech is
exhibited by Jan Hamilton of the Hemophilia Federation at a
1998 BSAC meeting:
Does anyone hear an echo? An echo which eerily reminds
us of the early 1980s? Are we once again being led down a
path which will attack and eradicate several thousand more
persons with hemophilia? We are constantly being put in the
position of having to take the risks and our community is
woefully tired of being the canaries in the coal mine . . . [42]
This line of argument was subsequently taken up by
members of the advisory committees. For example, Barbara
Harrell, a consumer representative on TSEAC, remarked at a
1998 meeting that: ‘‘the reluctance to reduce the repeat
donor pool to reduce the theoretical risk of HIV allowed that
disease to become epidemic in the United States’’ [19].
In order to balance these two competing concerns,
members of TSEAC recommended restricting donor deferral
to individuals who had spent a significant amount of time in
the UK. Because the majority of US tourists visit the UK for
only a short amount of time, it was suggested that such a
measure would limit losses to the blood supply while
excluding the riskiest donors. To aid in their selection of
the appropriate criteria, committee members asked the
blood-banking community to conduct another survey that
would specify the amount of time blood donors had spent in
the UK [19].
The results from this survey led to the introduction of a
tiered system of deferrals based on the estimated loss of
donors at each level. In November 1999, the FDA instituted
deferrals for anyone who had spent more than six months in
the UK between 1980 and 1996 [46]. In May 2002 they
decreased the allowable amount of time in the UK to three
months and added a deferral for members of the US military
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vCJD and Transfusion
who had been stationed in certain other parts of Europe for
more than six months [46]. In October 2002, a deferral was
instituted for all donors who had spent a total of more than
five years in Europe from 1980 to the present [46]. At each of
these steps, the number of donors likely to be lost was
weighed against the potential risk reduction [43,44].
Donor Selection Criteria: The Influence of the HIV
Experience in the UK
In the UK at that time, unlike the US, governmental
advisory committee meetings were closed to the public. While
hemophilia activists were unable to attend these meetings,
they found other avenues through which to make their voices
heard. An example of this is an open letter published in The
Lancet by the United Kingdom Haemophilia Centre Directors’
Organization (UKHCDO), demanding access for people with
hemophilia to plasma products imported from countries
thought to be free of BSE [47]. In their letter, the UKHCDO
explicitly drew on past experience with AIDS in calling for
such regulations.
Following the UKHCDO’s letter, Nature reported that
‘‘foot-dragging by the British government is exposing
hemophiliacs to an avoidable risk of infection with the new
variant of Creutzfeldt-Jakob disease’’ [5]. Although such a
measure had not been recommended by SEAC, UK Health
Minister Frank Dobson announced in February 1998 that UK
plasma fractionation centers would begin importing plasma
from BSE-free countries for the production of plasma
products. In his reasoning, Dobson explicitly noted that
while the risk of vCJD transmission ‘‘is hypothetical, never-
theless the fear of it is very real to this group which has
previously been affected by both HIV and Hepatitis C
transmitted from Factor VIII’’ [48].
As in the US, the selection of appropriate donor restriction
criteria in the UK was influenced by competing interest in
maintaining an adequate blood supply. Significantly, the
donor selection restrictions in the UK were applied to only
plasma products and not labile components such as packed
red blood cells. Due to their limited shelf life, there was
concern in the UK about maintaining an adequate supply of
labile components from overseas sources.
In interviews, all UK governmental employees said that the
experience with HIV/AIDS played a crucial role in shaping
concern about vCJD transmission through blood and plasma
products, especially through concerns raised by the hemo-
philia community. Evidence for this is found in government
documents as well [49]. Half of the government employees
mentioned the threat of recalls of plasma products for
possible vCJD contamination, as occurred in October and
November of 1997 in the UK [50], in contributing to the
decision to import plasma. Government employees pointed
out that recalls are expensive to carry out and often much of
the product has already been consumed by the time of the
recall, leading to fear of exposure on the part of consumers.
Just prior to the UK’s decision to import plasma, the
Committee for Proprietary Medicinal Products, Europe’s
pharmaceutical regulator, banned pharmaceuticals contain-
ing UK-derived albumin, a measure designed to avoid such
recalls [51]. While mentioned in only one interview, this likely
played a role in the UK’s decision-making process, as
evidenced by documentation of meetings held by the
Committee on the Safety of Medicines [52–54].
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While two-thirds of the members of SEAC felt that the
background of HIV/AIDS contributed to the focus on blood
as an avenue for transmission of vCJD, none of the members
of SEAC felt that hemophilia activists had a direct impact on
the flow of the discussion or the decision making by
committee members. Such an outcome is not surprising
considering that hemophilia activists were not present at
SEAC meetings. This observation is also consistent with the
fact that SEAC did not recommend the importation of
plasma at their 24 October 1997 meeting.
Consideration of Leukoreduction as a Risk Management
Strategy in the UK
At their 24 October 1997 meeting, SEAC recommended
‘‘that the Government should consider a precautionary policy
of extending the use of leucodepleted blood and blood
products as far as is practicable’’ [55]. Leucodepletion, often
referred to as leukoreduction in the US, is defined as the
removal of white blood cells by filtration or other approved
methods so that less than a specified number of lymphocytes
remain in the final product [56]. The members of SEAC
interviewed who were serving on the committee at the time
agreed that one particular scientific study became the focus
of discussion and motivated their decision to recommend
leukoreduction. This study, conducted by Adriano Aguzzi’s
lab at the University of Zurich, had not yet been published.
The committee was made aware of the study prior to
publication through the existence of social and professional
connections between Aguzzi’s lab and scientists and regu-
lators in the UK.
Aguzzi’s experiment employed a variety of transgenic
mouse models to clarify which elements of the immune
system were required for prion infection [57]. Some of the
mice were missing genes necessary for the production of B
and T cells, some for the production of B cells only, and
others for the production of T cells only. Aguzzi’s group
reported that when exposed, the mice deficient in functional
T cells developed the disease normally while those deficient in
B cells were protected. They concluded that ‘‘B cells may be
the physical carriers of prions’’ in the blood [57].
While Aguzzi’s results did not prove that B cells carry
prions, scientific advisors and regulators were intrigued by
this possibility. It implied that merely removing B cells from
blood products could reduce the likelihood of transmitting
infection. On this basis, SEAC suggested that ‘‘it is logical to
seek to minimize any risk from blood or blood products by
reducing the number of lymphocytes present’’ [55].
Members of SEAC viewed Aguzzi’s results as consistent with
the results of prior experiments on blood that had detected
infectivity through assay of the buffy coat, a component of
blood in which lymphocytes are concentrated. The buffy coat,
in fact, had been the sole component of blood to be assayed
in many of these studies [26,27]. This was due to the notion
that prion infectivity should be cell-associated. In other
words, most researchers had not looked for infectivity in
plasma or other blood components.
All of the UK government employees identified the results
of this experiment as having a significant influence on the
subsequent decision of the UK Department of Health to
implement SEAC’s recommendation. More than half indi-
cated that if the political environment at the time had not
necessitated immediate action on the issue, the results of a
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single experiment would never have been relied on to such an
extent. Pressure from the public was building in light of the
identification of several vCJD victims who had previously
donated blood. In late October and early November of 1997,
the UK government issued recalls of blood products for
possible vCJD contamination [50]. In both cases, most of the
implicated blood products had already been consumed. The
recalls were highly publicized, and the resulting public
concern raised the stakes for risk reduction efforts. Two days
after the second recall announcement, Health Minister Frank
Dobson issued a press release stating that the government had
accepted SEAC’s advice related to vCJD and had instructed
the NBS ‘‘to start work towards the possible extension of
leucodepletion of blood’’ [58].
In July 1998, after the NBS had developed the appropriate
infrastructure for managing universal leukoreduction, the
policy was officially implemented [59]. In the interim between
the government’s acceptance of SEAC’s recommendation and
its implementation, Lord Phillips’ inquiry into the manage-
ment of BSE had begun [60]. New revelations about the
mishandling of the BSE crisis appeared in the papers daily,
increasing the pressure on the government to do something.
In announcing the implementation, Frank Dobson said: ‘‘We
will do whatever we are advised to reduce the theoretical risk
to the blood supply of the transmission of nvCJD’’ [59].
Even at the time, a reduction in vCJD transfusion trans-
mission risk was not viewed as the only potential benefit of
leukoreduction. As the Deputy Chief Medical Officer, Jeremy
Metters, noted: ‘‘There are a variety of benefits for patients
attributed to the use of leucodepleted blood. It avoids the risk
of fever in patients who require repeated transfusions,
reduces the risk of graft rejection in patients requiring bone
marrow transplants, and prevents infections in babies young-
er than a year’’ [59]. It was estimated by the NBS, however,
that such identifiable clinical benefits could not justify the
cost of implementing universal leukoreduction [61]. Instead,
Dobson and Metters emphasized that ‘‘SEAC’s expert advice
is that leucodepletion would be a sensible and practical
precautionary measure to take against the theoretical risk
from [vCJD] because if infectivity were to be present in blood,
it would most likely be in the white cells’’ [59].
While a risk assessment of vCJD transfusion transmission
was commissioned on the advice of SEAC, the majority of the
government employees and members of SEAC who were
interviewed felt that it had little impact on the actual
decision-making process. Support for this conclusion is
found in documentation indicating that both the policy to
import plasma and the policy to universally leukoreduce
blood components were implemented before the risk assess-
ment was completed [49,59,62]. Among the majority who felt
the risk assessment did not play a significant role in the
decision-making process, the most common reason given was
that the risk assessment involved too many uncertainties
about which unreliable assumptions were made.
Consideration of Leukoreduction as a Risk Management
Strategy in the US
TSEAC also held its first meeting devoted to the trans-
fusion transmission risk of vCJD in October 1997 [45]. The
TSEAC meeting, however, followed a rather different format.
Aguzzi’s study was not presented. Instead, the focus in terms
of laboratory data was on the preliminary results of a study
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conducted in the US by Paul Brown and Robert Rohwer.
Brown and Rohwer had examined the distribution of prion
infectivity in different blood components and plasma
fractions [63]. Like Aguzzi’s research results when they were
first presented to SEAC, the results of their study were
unpublished at the time. Also like Aguzzi’s study, their study
had come to the attention of regulators through social and
professional connections.
Brown and Rohwer conducted their experiments in mice
infected with Gerstmann-Straussler syndrome, pooling the
blood from multiple animals and then separating and
fractionating it in a scaled-down version of the process used
by blood banks to process human blood [63]. They reported
that while infectivity was present in buffy coat, it was also
detectable in other blood components, such as plasma. In
fact, it appeared that less than half of the total infectivity in
blood was contained in the buffy coat. They admitted that
this result came as a surprise to them [45].
While Brown and Rohwer’s results were first presented to
TSEAC in October 1997 [45], Aguzzi’s results would not be
presented to the committee until December 1998 [19]. By that
time, many of the committee members were already aware of
Aguzzi’s results because they had been published [57]. At this
meeting, Aguzzi interpreted the results more cautiously than
he had in his publication, suggesting that while B-lympho-
cytes seemed to be required for infection, they might not
carry prions [19]. At the same meeting, Rohwer again
presented his finding that less than half of the infectivity in
blood appeared to be associated with lymphocytes [19]. After
much discussion, TSEAC recommended that deferrals be
instituted for donors who spent a significant amount of time
in the UK in order to decrease vCJD transfusion risk [19].
Leukoreduction, however, was not even suggested as a
management strategy.
In June 2000, the FDA asked TSEAC to specifically consider
the question of whether leukoreduction could be expected to
reduce the risk of transmitting vCJD [44]. BPAC had
recommended leukoreduction in 1998 for unrelated benefi-
cial purposes: reducing non-hemolytic transfusion reactions
and preventing the transmission of cytomegalovirus. Despite
BPAC’s recommendations, practical considerations, such as
cost, had so far prevented the FDA from implementing
regulations requiring universal leukoreduction. At this meet-
ing, FDA asked TSEAC to exclude these benefits from its
consideration and focus solely on vCJD.
Rohwer once again presented the results of the prion
infectivity distribution experiment, indicating that less than
half of the infectivity in blood was associated with the buffy
coat [44]. While a member of Aguzzi’s lab contributed to the
meeting, he focused on the results of more recent experi-
ments implicating the follicular dendritic cell, a long-lived
component of the immune system that resides in the spleen
and lymph nodes, as a potential site of prion replication [44].
He also presented the results of an experiment in which
reconstituting the B-lymphocytes of PrP-expressing mice
from PrP knock-out mice could re-establish susceptibility to
prion infection [64]. He interpreted these results as indicat-
ing that B-lymphocytes do not carry infectivity themselves,
but are required for the functioning of other components
that do [44]. As cells that depend on signaling from B-
lymphocytes for their maturation, follicular dendritic cells
were an ideal candidate.
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vCJD and Transfusion
Results of parallel experiments in a different laboratory
affirmed that PrP expression was not required by B-
lymphocytes for infection with prion disease, suggesting that
B-lymphocytes were unlikely to be the carrier of infectivity
[65]. While not presented or discussed at the TSEAC meeting,
at least three members of TSEAC were aware of these results
at the time of the meeting.
When it came time for TSEAC to vote on whether
leukoreduction could be expected to decrease significantly
the infectivity theoretically present in the blood of persons
with vCJD, the measure lost 13 to two [44]. Even the two
members of the committee who voted in the affirmative both
qualified their votes by stating that there was ‘‘insufficient
information’’ at present to be assured of this conclusion.
More than three-quarters of the members of TSEAC and all
but one of the US agency employees interviewed mentioned
Brown and Rohwer’s study when discussing the rationale for
the decision not to require leukoreduction for the purpose of
reducing vCJD transmission. While they were aware of
Aguzzi’s 1997 results, more than half of the members of
TSEAC indicated that they were unsure of how to interpret
them in light of further research. Four of the government
employees interviewed indicated that Aguzzi’s results had lost
their allure by the point in time that TSEAC considered
leukoreduction. One government employee specifically
pointed out that the results of Brown and Rohwer’s experi-
ment negated the initial interpretation of Aguzzi’s experi-
ment that B-cells were the carrier of prions.
Subsequent Events
In December 2003, the first probable transmission of vCJD
through blood transfusion was announced [67]. The victim
developed symptoms of vCJD 6.5 years after receiving a blood
transfusion at the age of 62 [6]. One of the units of red cells he
received had been donated by a 24-year-old man who later
developed vCJD. Statisticians calculated the probability of
recording a case of vCJD in this recipient in the absence of
transfusion transmission to be from one in 15,000 to one in
30,000 [6]. In response to this case, the UK government
announced a new policy excluding those who received blood
transfusions after 1980 from donating blood [67].
Then, in August 2004, researchers published another
worrisome case. They identified the disease-causing form of
the prion protein (PrPres) in the spleen of a recipient of
blood from a vCJD donor [7]. In this case, however, the
patient had died of causes unrelated to vCJD. In fact, no
PrPres had been identified in the patient’s brain and there
were no signs of neurological damage. Researchers ques-
tioned whether he would have gone on to develop the disease
had he lived long enough [7]. In addition, this patient was of a
different genotype than all other patients who had contracted
vCJD. He was heterozygous for methionine/valine at codon
129 of the prion protein gene [7]. This raised concern about
whether a larger subsection of the UK population might be at
risk for contracting the disease than was previously thought.
Even though the majority of research now indicates that
lymphocytes are unlikely to be the carriers of prion
infectivity in blood, the UK has not rescinded its policy of
leukoreduction. This is reconcilable with the fact that
leukoreduction has only increased in popularity around the
world since the UK made its decision, largely due to the
reputation of leukoreduction as a process capable of
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reducing problematic transfusion reactions [68–70]. The UK
continues its policy of universal leukoreduction, and many
other European countries and Canada have instituted the
process as well [71–73]. In the US, multiple hospitals and
blood banking services have implemented their own leukor-
eduction policies despite the fact that it is not an FDA
requirement [74].
Discussion
Qualitative case studies, such as the one described in this
article, provide an in-depth exploration of phenomena
bounded by space and time [75]. As such, the results of a
single case study are not expected to hold true universally.
They may be thought of as generalizable, however, in that
they attune us to certain possibilities and provide a frame-
work for analyzing similar phenomena [76]. The term
‘‘theoretical insight’’ will be used in place of ‘‘conclusion’’
in the following discussion in order to delineate this differ-
ence. While such theoretical insights should not be expected
to apply in all cases, they are useful in that they provide a
mechanism for anticipating possible future issues in the
management of emerging infectious disease.
In the past three decades, considerable efforts have been
made at the international level to enhance the science-based
quality of risk management. These efforts have been driven
by the desire to harmonize regulations and generate solid-
arity among nations, especially when issues of trade are
involved [77]. Such harmonization is thought to be important
to the smooth functioning of a free market. In this vein, the
1995 Sanitary and Phytosanitary Act of the World Trade
Organization called for all nations to base their food and
consumer product safety regulations on science [78].
While science is indeed an ingrained component of disease
management policy in many countries, science is not the only
factor that influences disease management policy. Recent
experience with other infectious diseases can have a
substantial impact on the direction and focus of disease
management policy. For example, the propensity to issue
recalls of blood and blood products in Western countries for
fear of transfusion transmission risk is influenced by the
experience with HIV/AIDS [79,80]. Past experience is invoked
both by affected communities as well as relevant regulators
and scientists. Such was the case with vCJD, where recent
experience with transfusion transmission of HIV generated a
context of heightened concern about other potential risks to
the blood supply, leading to both recalls and the institution of
policy changes. In contrast, recent experience with infectious
disease had the opposite effect when HIV was first recog-
nized. In this case, prior experience with swine flu [41] and
hepatitis B [81] led to the inappropriate minimization of
blood transfusion concerns. This leads us to our first
theoretical insight: because the perception and management
of disease may be shaped by previous experience, especially
catastrophic experience, there is always the possibility for
over-emphasis of certain potential routes of transmission and
under-emphasis of others.
In the above case study, UK government employees and
scientific advisors were under substantially greater time
pressure and approached issues pertaining to vCJD with
more urgency than their US counterparts. The public in the
UK felt that they had been duped by their government about
82
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vCJD and Transfusion
the threat of BSE, leading to calls for an inquiry into the
government’s management of the disease. In addition, the UK
government’s recall of blood products for possible vCJD
contamination increased the sense of urgency in that country.
This sense of urgency led the UK government to implement
policies within a relatively short time frame. Because BSE and
vCJD had not yet reached the US, US officials and scientific
advisors experienced less time pressure in considering
possible policy solutions, allowing for greater reflection on
the data and for the development of further scientific results
before making their decisions. Thus, the US did not impose
its first set of deferrals until November 1999, more than a
year after the UK had implemented both its plasma
importation and universal leukoreduction policies. Our
second theoretical insight follows from this observation: local
specificities may influence the temporality and direction of
disease management.
In addition, and contrary to published opinion [77], the
growing reliance on science in determining appropriate risk
management strategies does not ensure policy agreement. As
exhibited in this case study, the differential uptake and
interpretation of scientific studies can result in contradictory
policy decisions. This differential uptake may result from the
existence of alternative social and professional networks,
which promote or allow access to certain scientific studies,
especially unpublished ones, at different points in time. In
other words, what Choi refers to as ‘‘knowledge exchange,’’ or
the transfer of information between science and policy [82],
occurs along networks that are social in character. This is not
a new insight, but one that has been recognized by scholars in
the discipline of science and technology studies for some time
[83–85]. Social networks influence decisions about who is
invited to present research at advisory committee meetings,
how many times they are invited to present, and the manner
in which committee members refer to certain research results
during discussions.
The resulting differences in exposure can have important
consequences for the interpretation of results and subse-
quent decision making. Such was the case with vCJD, where
an alternate sequence of exposure to scientific studies and a
relative imbalance in the prominence of different results due
to existing social networks led to contradictory scientific
interpretations of the utility of leukoreduction as a risk
management strategy. This leads to our third theoretical
insight: basing risk management decisions on science will not
necessarily lead to homogeneous policies amongst nations
because the exposure to and interpretation of scientific
results depends on existing social and professional networks.
Qualitative Research as a Technique for Investigating
Complex Social Phenomena in Medicine and Health Policy
While quantitative methods are ideal for testing hypotheses
regarding simple causal relationships, there are certain
research questions, such as the questions asked in this study,
that are not readily amenable to quantitative forms of
investigation. Other unrelated but important questions in
health care and health policy today, such as how physicians
decide whether to classify an event as a medical error,
provide similar challenges. Because these questions revolve
around the organization and culture of institutions and the
people who occupy them, they require the application of in-
depth, broad-based, qualitative methods.
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1761 October 2006 | Volume 3 | Issue 10 | e342
Qualitative methods are sometimes viewed with suspicion
by clinicians who are more familiar with quantitative
methods. It should be remembered, however, that no form
of research is free from the influence of bias and personal
assumptions. As Ioannidis points out, quantitative studies are
habitually plagued by such issues, and they cannot be
eliminated simply by conducting more studies or involving
independent research teams [86]. ‘‘A major problem,’’ he
notes, ‘‘is that it is impossible to know with 100% certainty
what the truth is in any research question.’’
Popay has suggested that the primary marker of high-
quality qualitative research is its ability to produce a
provisional understanding of the basis of behavior and action
[87]. As such, good evidence in qualitative research is often
held to depend on a thorough investigation of subjective
meaning. In the above study, this was achieved through a
lengthy period of immersion (three years) in the field of prion
research and prion policy production. This immersion
involved multiple discussions with members of advisory
committees, agency employees, and scientists as well as
participation and observation at multiple scientific meetings,
advisory committee meetings, and other forums for the
discussion of issues related to the topic of study.
While quantitative research aims for reliability through the
use of standardized mechanisms of data collection, such as
surveys, these tools are antithetical to qualitative research
[88]. Because most qualitative research is inductive, it is
important not to impose ready-made categories on the
process of data collection, which is precisely what the
application of a survey or a standardized interview format
does. Thus, while a transparent description of methodology is
key to ensuring reliability in qualitative research [88],
qualitative methods will never achieve the level of reliability
inherent in quantitative methods due to their interpretive
nature. This should not, however, negate the utility of
qualitative research. The complexity of interpreting and
evaluating qualitative research is a by-product of the same
characteristics that make qualitative methods suitable for the
investigation of otherwise impenetrable problems in medi-
cine and health policy. In other words, this shortcoming can
be viewed as an opportunity.
The three theoretical insights outlined in this paper: that
the perception and management of disease may be shaped by
previous experience, that local specificities influence the
temporality of decision making, and that the exposure to and
interpretation of scientific results may depend on existing
social and professional networks within a given nation,
provide a frame-work for analyzing differences in disease
management policy across nations. They also provide a
mechanism for anticipating future international manage-
ment issues concerning emerging threats to human health,
such as SARS, H5N1 influenza, and even bioterrorism. The
above analysis indicates that improved dissemination and
uptake of science-based criteria is not enough to ensure
solidarity. Thus, it is important to have other mechanisms in
place for enhancing cooperation when cooperation is
desired.
Acknowledgments
Author contribution. MLP completed the work described in this
study.
iMedPub :: Thematic collections :: Volume 1
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Social Medicine in the 21st Century
vCJD and Transfusion
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Social Medicine in the 21st Century
Reconstructing Tuberculosis Services
after Major Conflict: Experiences
and Lessons Learned in East Timor
Nelson Martins1,2, Paul M. Kelly1,3*, Jocelyn A. Grace1, Anthony B. Zwi4
1 Menzies School of Health Research, Darwin, Northern Territory, Australia, 2 Institute of Advanced Studies, Charles Darwin University, Darwin, Northern Territory, Australia,
3 National Centre for Epidemiology and Population Health, College of Medicine and Health Sciences, Australian National University, Canberra, Australian Capital Territory,
Australia, 4 School of Public Health and Community Medicine, University of New South Wales, Sydney, New South Wales, Australia
Funding: NM is supported by the
United Nations Children’s Fund/
United Nations Development
Program/World Bank/World Health
Organization Special Program for
Research and Training in Tropical
Diseases. PMK is supported by the
National Health and Medical
Research Council of Australia. The
funders had no role in study design,
data collection and analysis, decision
to publish, or preparation of the
manuscript.
Competing Interests: The authors
have declared that no competing
interests exist.
Academic Editor: Alan D. Lopez,
The University of Queensland,
Australia
Citation: Martins N, Kelly PM, Grace
JA, Zwi AB (2006) Reconstructing
tuberculosis services after major
conflict: Experiences and lessons
learned in East Timor. PLoS Med
3(10): e383. DOI: 10.1371/journal.
pmed.0030383
Received: October 6, 2005
Accepted: July 10, 2006
Published: August 22, 2006
DOI:
10.1371/journal.pmed.0030383
Copyright: � 2006 Martins et al.
This is an open-access article
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Abbreviations: CNRT, National
Council of East Timorese Resistance;
INTERFET, International Force East
Timor; MoU, memorandum of
understanding; NGO, non-
government orgnanisation; TB,
tuberculosis; UN, United Nations;
WHO, World Health Organization
* To whom correspondence should
be addressed. E-mail: paul.kelly@
anu.edu.au
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Introduction
ABSTRACT Tuberculosis (TB) infection and disease is intertwined with
poverty [1]. The overwhelming burden of TB, over 80% of the
4.4 million cases of TB notified to the World Health
Background
Organization (WHO) in 2003, lies in developing countries
Tuberculosis (TB) is a major public health problem in developing countries. Following the [2]. Almost 60% of the cases were notified from Asian or
disruption to health services in East Timor due to violent political conflict in 1999, the National Pacific countries [2].
Tuberculosis Control Program was established, with a local non-government organisation as In 1993, WHO declared TB a global emergency and
the lead agency. Within a few months, the TB program was operational in all districts.
formulated a ‘‘five-point plan’’ known as DOTS (for ‘‘directly
observed treatment, short-course’’) to fight the disease. It
Methods and Findings comprises political commitment, case detection using sputum
Using the East Timor TB program as a case study, we have examined the enabling factors for microscopy, standardized short-course chemotherapy under
the implementation of this type of communicable disease control program in a post-conflict proper case-management conditions including directly ob-
setting. Stakeholder analysis was undertaken, and semi-structured interviews were conducted served treatment, a regular drug supply, and a standardized
in 2003 with 24 key local and international stakeholders. Coordination, cooperation, and recording and reporting system that allows assessment of
collaboration were identified as major contributors to the success of the TB program. The individual patients as well as overall program performance [3].
existing local structure and experience of the local non-government organisation, the Huge strides have been made in DOTS implementation during
the past decade. There is a need for research to address the
commitment among local personnel and international advisors to establishing an effective
program, and the willingness of international advisers and local counterparts to be flexible in applicability of the DOTS strategy in post-conflict settings
their approach were also important factors. This success was achieved despite major because of the often extraordinary circumstances present [1].
impediments, including mass population displacement, lack of infrastructure, and the East Timor shares a border with Indonesia and lies 800 km
competing interests of organisations working in the health sector.
Conclusions Table 1. Timeline of Key Political and TB Control Developments in East Timor
Five years after the conflict, the TB program continues to operate in all districts with high
Date Political Developments
notification rates, although the lack of a feeling of ownership by government health workers
remains a challenge. Lessons learned in East Timor may be applicable to other post-conflict Prior to 1974 Portuguese colonization
settings where TB is highly prevalent, and may have relevance to other disease control programs.
1975 to 1999 Indonesian occupation
May 1999 Referendum announcement; UN Mission in
The Editors’ Summary of this article follows the references. East Timor arrives to oversee democratic process
May to August 1999 Increasing militia activity disrupts health services
throughout East Timor
30 August 1999 78.5% of East Timorese vote for independence
1–19 September 1999 Post-referendum period; anti-independence militia
destroy East Timor; mass refugee movements
20 September 1999 First INTERFET troops arrive
September 1999 to February 2000 Emergency period
16 February 2000 Formation of the IHA under the UN Transitional
Authority in East Timor by eight international
and 16 Timorese health professionals
March 2000 to May 2002 Transition to independence
20 May 2002 East Timor independence day
IHA, Interim Health Authority (nascent Ministry of Health); NTP, National Tuberculosis Control Program.
DOI: 10.1371/journal.pmed.0030383.t001
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TB in Post-Conflict East Timor
to the northwest of Australia. It is one of the poorest
countries in the Asia-Pacific. The population of 925,000 are
predominantly subsistence farmers; their families live in rural
areas [4]. After 400 y as a colony of Portugal, East Timor was
annexed by Indonesia in 1975, and for the following 24 y it
was considered a province of Indonesia. In 1999, the country
was torn apart by political violence led by groups who
opposed the outcome of a referendum in favour of East
Timorese independence. Militia systematically ransacked,
looted, and destroyed up to 70% of infrastructure in almost
every town and village, with government buildings—includ-
ing health facilities—being major targets. The health-care
system collapsed. United Nations (UN) peacekeeping troops
intervened and stabilised the country under UN adminis-
tration for 2 y, before East Timor gained independence in
May 2002 (Table 1).
The international humanitarian response to the complex
emergency in 1999 was swift: within a week of the interna-
tional sanction of a UN peace enforcement mission (Interna-
tional Force East Timor [INTERFET]) in September, several
UN agencies (including WHO) had arrived. Within a month,
around 100 international non-government organisations
(NGOs), many with health components to their work, were
present in the country. The lack of government structures,
the absence of many community leaders, the mass displace-
ment of the population, and a perceived reluctance on the
part of East Timorese leaders to make decisions in these
circumstances made dealing with the situation from a
development perspective difficult [5]. In the emergency
phase, health services were mainly delivered by international
NGOs, with church-run clinics and some not-for-profit
private practices providing important additional coverage.
In the transition to independence, NGO-run health services
were progressively handed over to the nascent Ministry for
TB Control
Indonesian NTP (1996–1999);
Caritas East Timor TB control program (1997–1999)
TB control also severely affected
26–28 October 1999: WHO TB assessment mission to
East Timor; 26 November 1999: first meeting of National Tuberculosis
Committee; 21 January 2000: NTP established and commences
operations in three districts
October 2000: NTP operating in all 13 districts with NGOs as main
implementing partners in early period, then IHA in later period
By end of 2002: population coverage: 79%; 10,722 patients
treated (2000–2002); treatment success: 81%
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Box 1. Insider and Outsider Perspectives in Qualitative Research
An important feature of the work undertaken and presented
here was the involvement of two of the authors in the events
described in this paper. These insider–outsider perspectives are
contentious, but we believe add considerable strength to the
insights able to be derived through such work: they offer an
opportunity to tell the story of the TB program through the
words of both the authors and the range of informants
consulted, and they demand reference back to the real
constraints and opportunities operating in such environments.
They add to the reflections of others to develop a rich insight
into the perspectives of the stakeholders involved at the time,
and their voices, heard through this paper.
The boundary between researcher and researched frequently
blurs in qualitative studies [32]. The authors (N. M., the founding
director of the TB program, and P. M. K., an international TB
consultant) were key participants in the processes and events
described in this paper. Power relationships are always proble-
matic in research, in particular in qualitative research. We were
acutely aware of this during the planning phase, the research
itself, the analysis of the data, and the writing up of our findings.
The principal author (N. M.) was the key to access in this study,
and we feel that this unique access to such a wide variety of
opinions outweighs the potential bias that his previous position
may have bought to the study findings. It should be noted that
N. M. was not in a position of power when the interviews took
place (he had resigned as director of the TB program some 3 y
previously). In Timorese society, it is true that social hierarchy
can lead to those perceived as ‘‘inferiors’’ being reticent to
criticise their ‘‘superiors’’. However, peers and those in socially
establishment of a successful TB program in East Timor,
while attempts to develop other sustainable programs in the
post-conflict period have struggled [5]. We document,
analyse, and reflect on this set of experiences and place them
in the public domain for critique and lesson-learning.
Methods
Figure 1. Structure of the National Tuberculosis Control Program in East Timor, 1999–2002
1 The methods employed included the following: review of the
Minister of Health includes earlier health leaders, including the co-chair of the Interim Health Authority of the United Nations Transitional
Administration in East Timor (UNTAET) and later Head of the Division of Health Services in the East Timorese Transitional Authority (ETTA). published literature on post-conflict health systems develop-
2
MoH, Ministry of Health. ment, review of documents and reports from the time period
3
NTP, National Tuberculosis Control Program. 1999–2003 relating to East Timor, interview of key informants
4
Caritas, Caritas East Timor, a Timorese church-based NGO.
5
iNGO, international NGO. with knowledge of the TB program and its development over
DOI: 10.1371/journal.pmed.0030383.g001 this time period, and critical reflection on the experience of
two key stakeholders and authors (N. M. and P. M. K.).
Health (the Interim Health Authority) under the UN WHO’s DOTS strategy (Figure 1). In its first 5 y, the TB All stakeholders and influential individuals currently and/
administration (Table 1). program diagnosed and commenced treatment for 17,210 or previously involved in the setting up and administration of
TB had, for many years, been identified as a major public patients [7]. In 2001, the notification rate was 446 cases per the National Tuberculosis Control Program between 1999
health problem in East Timor. From 1996, two TB programs 100,000 population for all forms of TB, and 154 per 100,000 and 2003 were identified and contacted with a request to
operated in parallel: one run by the Indonesian Ministry of population for new smear-positive pulmonary cases. These are interview them. Of the 30 people identified, 24 were available
Health and one run by an externally funded church-based the highest rates in the Southeast Asian and Western Pacific for interview. No stakeholder refused participation, and the six
organisation (Caritas East Timor). Following the referendum Regions [2]. This reflects both the high burden of disease and who did not participate were either non-contactable or were
and associated violence, many health staff left East Timor or the effective case-finding system that has been developed and otherwise unavailable for interview. Stakeholders who were
were unable to continue working, and TB services were sustained in East Timor since 1999. There has been gradual not interviewed were represented in the interviewed group by
severely disrupted [5]. The magnitude of the TB epidemic in progress in DOTS expansion, with the TB program function- others who held closely related posts during the time period
East Timor is believed to have increased in 1999 [6]. Within a ing in all 13 districts and accessible to 79% of the population under study. Those who participated in this study included
few months of the September events, people from many of East Timor. Treatment results have improved, and the government officials (the Minister of Health and other high-
different organisations contributed to the establishment of a treatment success rate is now consistently over 80% [7]. ranking staff), local and international health professionals,
National Tuberculosis Control Program that conformed to This paper aims to identify the key factors that enabled the staff of local and international NGOs involved in health
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superior positions are typically frank with their opinions, as
evidenced by the dissenting and critical statements included in
the article. This free exchange of views is also demonstrated by
the dissenting opinions obtained in interviews of foreign staff.
Thus, we are confident that we have addressed this important
issue, and acknowledged potential bias in our conclusions.
The positioning of two of the authors as ‘‘insiders’’,
particularly in combination with two ‘‘outsider’’ authors, adds
strength, but also has some limitations. The limitations include
whether too strong a voice is given to the particular perspectives
of two of the players, and whether their involvement in conduct
and analysis of interviews undermines objective assessment. The
involvement of the two authors not involved in the TB program
development offers an opportunity to engage with some of the
material through review of the interview data, and to test out
some of the ideas and the analysis.
As stated by Merriam and colleagues [33], ‘‘the insider’s
strengths become the outsider’s weaknesses and vice-versa’’,
and ‘‘this multiplicity of perspectives’’ enhances rather than
detracts from the validity of observations made. Developing an
insider–outsider team helps establish balance. What is presented
can perhaps be described as the perspectives and critical insights of
key players in the establishment of the TB program at a crucial time
in its history. The benefit is that unique insights are documented,
analysed, and presented for further critique and analysis: no
attempt is made here to state that the insights presented in this
paper are neutral or not coloured by the involvement of two key
players. Rather we argue that this history provides additional depth
and richness, available for others to build upon.
services delivery, private practitioners, local politicians,
church leaders, current and previous TB program directors
and staff, the current and previous WHO representatives in
East Timor, donor representatives, and TB consultants.
Semi-structured interviews were conducted by the principal
author (NM), either face-to-face (n ¼ 16) or via E-mail (n ¼ 8).
Open-ended questions were employed in order to gain as much
qualitative information as possible about the participants’
views on the process of establishing the National Tuberculosis
Control Program. Participants were also asked to comment on
the effectiveness of the TB program, and the current and
future challenges it faces. The interviews were recorded in
handwritten notes, tape recordings and E-mail messages in
response to the interviewer’s written questions. After each
interview a summary transcript was prepared, and participants
were offered the opportunity to read and check these for
accuracy. Where required, follow-up interviews were under-
taken to clarify particular comments and issues. From these
interviews we were able to identify, through the perspectives of
these stakeholders, the factors that were perceived to contrib-
ute to the success of the East Timor TB program, and the
challenges it faces in the future. Three authors (NM, ABZ, and
JAG) contributed to the stakeholder analysis, drawing on the
methods described by Varvasovszky and Brugha [8]. Two of the
authors (ABZ and JAG) were not directly involved with the
events reported in this paper and acted as independent
external observers within the team (see Box 1).
Ethical approval for the study was obtained from the
Human Research Ethics Committees of the Menzies School of
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Table 2. The Major Impediments to the Establishment of a National TB Control Program in East Timor, the Solutions Identified, and the
Agencies Responsible for Their Implementation
Major Impediments
Highly mobile population
Infrastructure destroyed
Lack of coordination of/interest in TB treatment
Human resources scarce
Transport/communication difficulties
Drugs and other supplies unavailable
Limited financial resources
Increased requirement for technical support
DOI: 10.1371/journal.pmed.0030383.t002
Health Research and of Charles Darwin University, Darwin,
Australia. In the absence of a local ethics committee, written
permission to carry out the study was obtained from the
Minister for Health of the Democratic Republic of East Timor.
Results
The key barriers to establishing the National Tuberculosis
Control Program are summarised in Table 2. These included
population mobility; lack of health infrastructure, supplies,
equipment, and trained staff; transport and communication
difficulties; and a scarcity of financial, technical, and political
will to address TB in the emergency phase.
Most participants expressed concern about the increased
number of TB cases during the emergency period, most likely
due to the massive displacement of people; malnutrition,
sanitation, and shelter problems; and the disruption of the
previous TB programs. WHO reported that there had been
no TB treatment program for several months in late 1999,
therefore there was a ‘‘backlog’’ of patients requiring treat-
ment [9]. The displacement of the majority of the country’s
population was another major problem in the implementa-
tion of an effective TB treatment program. It was reported
that there was a large population drift to Dili during the first
few months of the emergency period, for security, food,
shelter, and the possibility of gaining employment [9]. This
situation greatly concerned some of the participants in this
study, who during the first TB program coordination meeting
predicted future constraints to the successful completion of
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TB in Post-Conflict East Timor
Solution
Suspect register
Albergues (hospices)
Rapid roll-out of program to rural areas
Communication mechanisms
Use of undamaged Catholic clinics
Use of alternative buildings (e.g., church halls)
Rebuilding of clinics (not in emergency phase)
Early regular coordination meetings open to all
Appointment of lead agency
National guidelines developed
Political support ensured
MoUs developed and signed
Utilisation of local capacity
High motivation and work ethic of central unit staff
Adaptation of training materials for clinicians, TB nurses, and lab staff
Rapid implementation of training courses for TB staff (open to all organisations
that had signed MoU)
Coordination with UN agencies
Use of vehicles and police radio
Use of available data for planning
Rapid procurement from international sources
Rapid scale-up from current donor
Extra sources of support
Rapid deployment and frequent repeat visits of international consultants
Continuation of long-term technical assistance
Rapid expansion of National Tuberculosis Control Program supervision to all
health units with TB program
TB treatment when these people returned to their villages
after having begun treatment in Dili.
There were also a number of factors that delayed the
process of establishing the TB program. Lack of money,
drugs, infrastructure, and transportation characterised all
sectors in East Timor in the early emergency period. It was
very difficult to get from one place to another in order to
coordinate the work without regular and reliable transport
and amidst security concerns in some areas. There were many
times when TB program staff had to rely on the UN and
NGOs for transportation. In the early stage of the TB
program, the program was mainly run through the Catholic
Church clinics because many of these had not been totally
destroyed, unlike government clinics.
The main enabling factors for success of the TB program
are also summarised in Table 2. The findings of this study
suggest that at the centre of the successful development of
East Timor’s TB program were coordination, cooperation,
and collaboration between local and international agencies,
TB experts, and staff. These were brought about by a
willingness to take into account and adapt to local contextual
factors (flexibility), and the strong commitment and high level
of motivation on the part of key stakeholders.
Coordination and Cooperation
By coordination, we mean a sharing of responsibilities to
prevent a duplication of effort. Cooperation is a closely
related concept, here referring to a sense of common
purpose, and the use of common methods to work together
to achieve something.
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Most participants in this study considered coordination to
be a major factor in the successful establishment of a national
TB program post-conflict, while acknowledging that it was
very difficult to achieve given the conditions of the early
emergency phase. The competing interests of local and
international health professionals, NGO, UN agencies, and
military forces fought against it.
In the early phase of the emergency, more than 15 NGOs
plus the International Committee of the Red Cross and the
INTERFET military health team arrived to give assistance, each
of them proposing to develop activities in a particular
geographic region or in relation to a particular component
of health policy and system development [10]. WHO attempted
to act as a coordinating body for health but experienced a
number of constraints. Some of those interviewed expressed
the opinion that budget limitations had prevented WHO from
functioning as effectively as had been hoped for. At that time,
services including health were highly centralised, and health
service teams were sent out from Dili to different parts of the
country in the company of the security forces. Neither capacity
building nor institutional development occurred [5,10].
Soon after the conflict in 1999, TB was regarded as a
relatively minor and non-urgent issue compared to diseases
with high outbreak potential such as cholera, dysentery,
dengue fever, and measles. Most of the international NGOs
chose not to include TB in their treatment procedures. As
one participant explained:
The international NGOs had their own mission, and they
focused more on acute or emergency cases. Although they
were aware of the increasing number of TB cases, they did
nothing because there was no mechanism through which
they could do so. [Senior TB program official]
The Caritas TB program was reported to be still function-
ing in some places at this time, and there were also some
uncoordinated, and some might say inappropriate, TB
treatments being provided by local health professionals,
who administered single-drug treatment to TB patients.
These local professionals had obtained the drugs from
government health centres before they were destroyed by
militia during the period of violence. It was difficult for the
National Tuberculosis Control Program to convince these
local professionals to follow international best practice in
treating TB patients because they had been following a
different treatment regime for a long time. Some interna-
tional medical practitioners also followed sub-optimal treat-
ment regimens.
During the emergency period, there was a vacuum. There was
no coordination. Everybody felt they had the right to treat
TB patients without follow-up because they had no capacity
to follow up the patient. There wasn’t good coordination.
[Founding member of the Interim Health Authority]
Of those NGOs treating people for TB, not all followed the
WHO recommended treatment schedule [9]. International
NGOs and certain ‘‘independent’’ international staff main-
tained strong views on how TB patients should be treated. On
the one hand, they insisted on their own procedures for TB
control, and their ‘‘right’’ to diagnose and treat TB patients
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without follow-up in many cases. On the other hand, some
refused to diagnose and treat TB, stating that it was not a
priority in a complex emergency situation, and their
organisations’ mandates precluded them from doing so.
Barriers to implement [the National Tuberculosis Control
Program] were obviously plenty, but what struck me most
was the difficulty in coordinating health professionals,
particularly to make them adhere to the [East Timor
National Tuberculosis Control Program] Manual or stand-
ard protocol. This is particularly so in the case of medical
doctors who came from a wide gamut of countries in the
world, bringing their own preferences and practices while
ignoring the international standards of DOTS adopted by
the TB program. [Senior Ministry of Health Official]
In establishing a policy framework for the provision of
general health services to the population, many interviewees
reported that, at least in the emergency period (see Table 1),
there were major difficulties in coordination between WHO,
the United Nations Children’s Fund, NGOs, local professio-
nals, the East Timorese Interim Health Authority, and
bilateral and multilateral donors at the highest level. Key
barriers to coordination were competition (between organ-
isations and individuals) and differences of opinion on
priorities. This included competition for resources (financing
and local personnel), legitimacy, and leadership. For example,
some donors and some NGOs wanted to introduce their own
style of TB control without reference to the local situation.
Despite this there was intensive negotiation in an effort to
coordinate the work for the establishment of an effective TB
program. There was strong commitment to preventing the re-
establishment of parallel TB programs. Experience from the
Indonesian period demonstrated that a coordinated ap-
proach was crucial.
The experiences of TB treatment during the Indonesian
period inspired us to strengthen the coordination and
control of the treatment strategy. We [the Interim Health
Authority] appointed Caritas as the sole implementer of
the TB program in East Timor, with the authority to ban
private practitioners or NGOs from treating TB cases and
importing TB drugs without their permission. [Founding
member of the Interim Health Authority]
Caritas East Timor began holding weekly coordination
meetings to accelerate the establishment of the TB program
in late 1999. Local and international professionals, local and
international NGOs working in health, clinicians, donor
representatives, other UN agencies such as the World Food
Program and the United Nations Children’s Fund, and large
NGOs such as the International Organization for Migration,
the International Committee of the Red Cross, and Oxfam
were among those who routinely attended. These meetings
led to a high degree of cooperation from the organisations
involved. Senior staff made a commitment to come to these
meetings that was vitally important for the planning process.
Continuity and consistency of decision-making and the
ability to carry this back to the field was also important. A
similar phenomenon was observed outside of Dili as the TB
program rolled out to the rural districts. The agreements on
roles and responsibilities formulated in these early coordi-
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nation meetings eventually resulted in a series of memoranda
of understanding (MoUs) between the TB program and the
implementing partners that codified the responsibilities of
the agencies involved in the implementation of the TB
program in the emergency and early transition period. These
MoUs were crucial in enforcing a standardised national
approach to TB control, particularly in the absence of any
legislative framework.
Cooperation between international TB consultants and
their Timorese colleagues as characterised by the willingness
to adapt to local circumstances was an important factor in
the establishment of a sustainable TB program in East Timor.
The international consultants involved did not see East
Timor as a ‘‘blank slate’’ upon which their public health plans
could be written without reference to local conditions. The
previous TB control structures and the experience and
expertise of local partners were acknowledged and became
central to the establishment of the TB program. From the
outset, the opinions of local TB control staff were sought
before any decisions were made on technical and operational
aspects. At their second meeting, the coordinating committee
of the TB program appointed a Timorese doctor (NM) as the
national TB coordinator, who chaired all subsequent meet-
ings and became the founding TB program director.
We had the money and expertise; we could easily have built
a sophisticated, though unsustainable TB program in East
Timor. However, we did not do it because we did not want
to be involved in the same mistakes as has occurred in
Kosovo and Cambodia. [international TB consultant]
In East Timor, money and drugs became readily available
because of the prompt response to the crisis by donors,
including the long-term donor to the NGO program. This
continuity of financial and technical support, together with
additional support from other sources in the emergency
period, was identified as one of the most important factors in
accelerating the process of developing the TB program.
Collaboration
Collaboration is a concept that is deeper than cooperation
and represents a shared vision for the future and not merely
the absence of competition. Partnership, shared understand-
ing, open communication, tolerance of difference, and trust
are key components of a collaborative approach. In the case
of the National Tuberculosis Control Program in East Timor,
successful implementation depended on the readiness of
local staff to trust their international counterparts, to learn
from them, and to adopt the international best practice
standard. At the time, many East Timorese were experiencing
intense feelings of distrust following the deeply disturbing
and destructive events of September 1999. The withdrawal of
the United Nations Mission in East Timor (UNAMET) at the
time of the violence despite earlier commitments to protect
voters after the referendum, regardless of the result, reflected
badly on international staff. Many members of the UN
mission were surprised to experience rejection from their
East Timorese colleagues. The lack of trust needed to be
managed sensitively and sincerely. Sergio Lobo—the Interim
Health Authority Co-Chair at the time—coined the phrase
‘‘one table, two chairs’’ to encapsulate the expectation that
local and international counterparts would sit and work
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TB in Post-Conflict East Timor
together, to develop ideas and make decisions. This was
central throughout the process of developing the TB
program.
Well, I think it is because there was a willingness to work
together between local and international expertise. But it
depends on the international expert or counterpart to
transfer the knowledge and provide a motivation [to the
local staff]. On the other hand, the willingness of local
professionals to accept the opportunity to learn and to
work based on the international best practice standard [is
also important]. [senior TB program official]
Throughout, there was also strong commitment from TB
program consultants and staff to incorporate international
best practice guidelines at the local level. This was covered in a
MoU signed by the main stakeholders in early 2000 (Table 3).
One strength of the collaboration at that time was the
ability of international experts to recognise the importance of
the National Council of East Timorese Resistance (CNRT) as
the only representative political organisation in East Timor.
At my first attendance as CNRT representative to the health
coordination meeting organised by WHO and UNICEF
[United Nations Children’s Fund], I realized that the meeting
was to coordinate the work of the international NGOs and
agencies. Later on, I was told that the UN and most of [the]
international agencies have a mandate or regulation that
prevents them to work with any political party. CNRT has
been regarded as a political party. [CNRT health spokesman]
There were strong links between the CNRT and Caritas
East Timor during the Indonesian period. This internal
political profile, Caritas East Timor’s track record in TB
control, and the recommendations of the October 1999 WHO
assessment mission prompted the Interim Health Authority
to appoint Caritas East Timor as the lead agency in the new
National Tuberculosis Control Program [11]. This decision
was crucial to establishing a sustainable TB program.
The government [Interim Health Authority] made a
decision to have only one TB program and appointed
Caritas East Timor as the implementing agency. That
decision was based on: firstly, because [of] the fact that the
Catholic clinics structure was there; secondly, Caritas East
Timor has experienced staff who were willing to run and
manage the program; and lastly, the government didn’t yet
have the structure to manage and run the program.
[founding member of the Interim Health Authority]
East Timorese sovereignty over the TB program was
maintained throughout the establishment and expansion of
the TB program. This ensured a rapid response by the TB
program leadership, with the assistance of international
consultants, to feedback from the field, and to the analysis
of quantitative data available from the program.
Most of the participants in this study felt that staff
motivation was also a key factor in the success of the TB
program. This was a difficult time for the staff in the early
stage, with most directly or indirectly affected by the post-
referendum violence. Despite this, most TB control staff
remained highly motivated and committed. The Christian
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Table 3. Main Roles of Collaborating Partners in the Establishment and Implementation of the TB Program in East Timor, as Laid out in
MoU in 2000
Partner
NGO (lead agency)
Interim Health Authority (nascent Ministry of Health)
External donors
External technical advisors
WHO
In 1999–2001, actual implementation of the National Tuberculosis Control Program at district, sub-district, and clinic level relied heavily on cooperation with many other partners in
government and non-government health-care providers. This was a dynamic situation, with increasing Interim Health Authority responsibility as the recruitment of government staff was
finalised (see Figure 1).
NTP, National Tuberculosis Control Program.
DOI: 10.1371/journal.pmed.0030383.t003
ethos of the NGO staff was an important factor, and staff drew
strength from their Christian beliefs to serve those in need.
The strong Timorese leadership was also an important
motivating factor. There was the previous experience from
the NGO TB program pre-independence, there was also a
certain amount of euphoria about finally becoming inde-
pendent, which led to many extraordinary things. Nation
building, contributing from one’s own expertise, coming
together to assist fellow Timorese, these were all elements that
bolstered health workers working for no pay, or only minimal
pay, during the emergency and even well into the post-
emergency phase.
In January 2000, less than 2 mo after the first coordination
meeting, National Tuberculosis Control Program was
launched. This occurred 1 mo prior to the establishment of
the Interim Health Authority. Five months after the first
meeting, one co-chair of the Interim Health Authority
referred to the TB program as the ‘‘shining light’’ in the
reconstruction process of East Timor, a view supported by
many interviewees.
It [the TB program] was the first program to develop a
memorandum of understanding....In that sense it was a
model of collaboration in which all of the partners had
clearly defined roles. The links with the church-run health
services [were] a great asset in re-establishing the program
as well as the continuous commitment of Caritas Norway.
The proximity of the technical assistance in Darwin was
obviously helpful. [founding member of the Interim Health
Authority]
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TB in Post-Conflict East Timor
Main Roles
Implement TB control
Choose and employ the NTP director and central unit staff
Be responsible for supply and distribution of drugs and other supplies and for
writing TB manual and other materials
Report (at least quarterly) on the progress of the NTP to the Interim Health
Authority
Ensure regular supervision of all regions and districts
Take a leading role in the planning and conduct of training courses
Ensure that the activities of the NTP are in accordance with East Timor’s national
health policies and plans
Facilitate and ensure the full participation of suitable and interested health ser-
vice providers
Oversee the coordination of the parties involved with the NTP
Be the main donor for the NTP
Periodically monitor the progress of the NTP
Provide external technical assistance to lead agency in the planning and imple-
mentation of the NTP
Participate in capability building of East Timorese health workers through formal
and on-the-job training
Participate in the periodical monitoring of the NTP progress
Participate in planned reviews and evaluations of the NTP
Participate in planned reviews and evaluations of the NTP
Assist the NTP with the planning and conduct of training courses and with hu-
man resource development
Four Years On: Current Challenges for the TB Program in
East Timor
TB control remains a public health priority for the new
East Timorese administration. Participants in this study are
aware of many problems that might affect the program’s
future effectiveness and sustainability.
Indeed, the TB program [is] probably facing the same
constraints that TB programs everywhere in less developed
countries are facing: personnel issues, supervision, quality
control, etc. [founding member of the Interim Health
Authority]
The lack of a sense of ownership of the program by
government health staff has been noted since the TB program
launch. Some staff of government clinics still regard the TB
program as a non-government program and refuse to commit
their time. The perception that the TB program is the
responsibility of Caritas has begun to change since the
Minister of Health wrote a letter to staff directing them to
cooperate with the TB program as part of the core business of
the Government Health Service. However, this cooperation
needs further consolidation through the involvement of sub-
districts and health posts in all TB program activities [7].
There has been a feeling of job insecurity and dissat-
isfaction among TB program staff due to the fact that many
are on short-term contracts with NGOs. In some cases, those
with previous experience in TB have been appointed to non-
TB-program positions in the government health service,
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Social Medicine in the 21st Century
leaving their positions in the TB program vacant. Con-
sequently, the government has had to recruit staff that have
no previous TB program experience for key roles within the
TB program. This has necessitated retraining in many cases.
The government has been recruiting the experienced staff
to work in the TB program; however, because of their
competency they are often promoted to higher level
positions, leaving their [empty] posts to be filled by those
who lack TB experience. [senior Ministry of Health official]
Some participants felt there is a need to change the
government recruitment procedure so as to keep the current
TB program structure under Caritas. Given continuing
capacity gaps in the government health service, they felt that
Caritas is the best organisation to continue to manage the TB
program. However, there is a recognised need for the
government to take over some coordination and financial
responsibility so as to gain a greater sense of ownership of the
program. Navigating this challenging period of handover
from NGO to government sensitively and constructively is
key to the long-term sustainability of most, if not all,
emergency-introduced health programs.
There was also concern expressed about the low level of
community awareness of TB in East Timor, and some argued
that unless this issue is addressed TB will always be a problem.
Some informants suggested that this problem could be
overcome by conducting a promotional campaign on TB to
increase patient and community awareness. It is a challenge
not only to explain what the TB program strategy involves
but also to help patients understand the rationale behind the
strategy. As one participant argued:
There is a need to allocate more time and resources to
conduct [a] nation-wide health education campaign in the
country. This will reduce stigma and improve the patients’
knowledge on TB. [international TB consultant]
Major challenges remain in determining the appropriate
balance between different components of TB programs and
in recognising the limitations of each component in achiev-
ing long-term sustainable health outcomes.
Discussion
There have been consistent calls for a more reflective
approach to the evaluation of health-care interventions in
conflict-affected settings—leading to policies and guidelines
better informed by evidence—if we are to improve the
international response [12–15]. Several recent high-profile
complex emergencies—in Mozambique, Cambodia, Kosovo,
East Timor, Afghanistan, and Iraq—demonstrate that post-
conflict situations, and the response to them, as well as the
response required, have changed in a number of important
ways. TB control in these settings is particularly interesting
and illustrative.
The geographic distribution of TB and that of political
conflict overlap. Of the top 22 countries with high TB
burden, which account for 80% of all cases of TB in the
world, seven have a history of significant conflict and/or
complex emergency situations in recent years [2]. During the
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TB in Post-Conflict East Timor
1980s and 1990s, high rates of TB disease and TB mortality
were reported in refugee camps in Africa and Asia [16–20].
Social and political disruption fuel TB epidemics and disrupt
the delivery of TB control services, resulting in increased
numbers of cases and, because of incomplete treatment,
heighten the possibility of multiple-drug-resistant TB [21,22].
This global epidemiology reinforces the need to improve
TB control in these complex settings, both for the benefit of
the people affected by the conflict and for neighbouring
nations, including those that receive refugees for temporary
or permanent re-settlement. This was dramatically demon-
strated by the high rate of TB documented in participants of
the ‘‘safe haven’’ exercise in East Timor in 1999 [6]. East
Timorese arriving in Darwin during September 1999 repre-
sented less than 0.01% of the Australian population, but
accounted for 6% of all TB cases diagnosed in Australia in
that year [23].
Continuity of health systems in periods of transition from
pre-emergency to during emergency to post-emergency and
ultimately to sustainable programs is an important compo-
nent of international responses to emergencies, but is rarely
achieved. Coordination, cooperation, and collaboration were
key components to achieving this aim in relation to TB
control in East Timor.
Coordination
Poor coordination is a well established problem in the
response to complex emergencies [13,21,24]. As was the case
in Kosovo, WHO’s ambition to become the implementing
agency for certain programs meant that it was at risk of being
seen as a competitor with other implementing agencies [13].
Constrained organisational mandates have been described
elsewhere as a potential impediment to comprehensive care
and services [25]. It can be argued that this is a reasonable and
perhaps responsible attitude for agencies with short-term
commitments and a lack of expertise in TB. However, in the
context of East Timor in 1999, many of the usual public
health and clinical concerns of emergency situations were not
present, whilst TB was so prominent [6,26]. It was thus
appropriate that the health sector did treat TB as a priority
issue in the early emergency phase.
Caritas East Timor was appointed as the lead agency of the
National Tuberculosis Control Program and successfully
acted as the coordinating body. The role of faith-based
NGOs is increasingly recognised as important—but not
without complexity and contradictions—in international
development settings [27]. One of the negative aspects of
having leadership be in the hands of an NGO is the NGO’s
lack of legislative authority. Hence, cooperation with the
government is crucial. For example, in East Timor, the TB
program required the Interim Health Authority to take a
policy decision to stop the private sector from importing TB
drugs or treating TB independent of the TB control program.
Cooperation
The emergency period is critical. The rapid injection of
money, expertise, and technology makes the recipient coun-
tries vulnerable to the development of sophisticated programs
that they will not be able to sustain. It takes good planning with
extensive knowledge of the local situation to establish a cost-
effective and sustainable program for a country under these
circumstances, and cooperation, particularly with local coun-
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1773 October 2006 | Volume 3 | Issue 10 | e383
terparts, is a key component for facilitating this desirable
outcome. The inclusive approach taken during the establish-
ment of the TB program in East Timor was in contrast to some
other programs introduced in the emergency period by
specific donors and/or international NGOs. The Roll Back
Malaria campaign [28] and an oral health program [5] lacked
the same level of cooperation with local partners, and these
programs have been less successfully sustained in the longer
term. In Cambodia the UN took control of the TB Control
Program in 1989 and sidelined local expertise for political
reasons, allowing state-based structures and services to be
unwound [29]. The result was limited short-term success, but
an unsustainable program in the long term [29].
Collaboration
The truly collaborative approach used in the establishment
of the TB control program in East Timor was built on mutual
trust and flexibility. Key to the development of these was a
recognition of the political context of East Timor by
international TB advisors.
In contrast with other political emergencies, for example,
in Kosovo and Cambodia, where competing political interests
were prominent and contestation the norm, [13] the CNRT
was the single, uncontested political authority in post-conflict
East Timor. While the CNRT was the umbrella organisation
for all political parties and groups that fought for independ-
ence, in the early phase of the emergency period most of the
NGOs and UN agencies refused to work with them as they
were bound by their mandate not to deal with political
parties. This created a sense of exclusion among the
Timorese. WHO was the exception, and considered the
CNRT a valuable partner in health system development [26].
International technical advisors truly listened to local
experience and accepted that this experience was valid in
the local context of East Timor. Local solutions, not just the
uncritical adoption of international standard solutions, were
key components of the success of the TB program [30]. This
flexible approach was more about the maintenance of
Timorese sovereignty and the recognition of the local
political context than about radical changes to internation-
ally recognised best practice guidelines. All of the essential
elements of DOTS were maintained, with the adoption of
some local adaptations (e.g., use of hospices in the intensive
phase of treatment, a network of satellite clinics in churches
and other public buildings, and the use of incentives to
ensure treatment compliance) [7]. Trust is increasingly being
described as a key issue in the re-establishment of services in
the aftermath of conflict [31]. For Timorese health workers,
the mixture of feelings of euphoria, pride, and distrust might
have prevented them from accepting and cooperating with
the international staff in the initial post-conflict period.
Importantly, local TB health workers trusted their interna-
tional advisors and heeded their advice concerning, for
example, the need for an inclusive approach and the use of
MoUs. Thus, flexibility, built on trust, was a crucial two-way
process in the TB control program establishment.
Conclusion
During 2000, a sustainable national TB control program
was established in East Timor in a post-conflict setting,
despite the many difficulties encountered. Coordination,
cooperation, and collaboration were the keys to this success,
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Social Medicine in the 21st Century
TB in Post-Conflict East Timor
achieved through the high level of commitment of those
involved, and the willingness of international experts and
agencies to acknowledge local expertise and adapt to local
circumstances. The latter was most evident in the early
appointment of a local NGO to manage and implement the
program. The utilisation of an existing local structure
drawing on local expertise and experienced staff was essential
to the program’s success. The East Timorese TB program
continues to function well and to improve the breadth and
quality of its interventions. The government’s commitment
to, and sense of ownership of, the national TB program will be
important to its continued performance improvement, and to
ensuring its long-term sustainability. It is acknowledged that
certain contextual issues, including the relatively small size of
the country, the presence of charismatic Timorese leadership,
and the presence of ongoing external financial and technical
support, have also contributed to the establishment of the TB
program. The East Timorese experience holds useful lessons
for international donors and aid agencies and for those
establishing TB control programs in other complex emer-
gency situations in the future.
Supporting Information
Alternative Language Abstract S1. Indonesian Translation of the
Abstract
Found at DOI: 10.1371/journal.pmed.0030383.sd001 (23 KB DOC).
Alternative Language Abstract S2. Tetun Translation of the Abstract
Found at DOI: 10.1371/journal.pmed.0030383.sd002 (23 KB DOC).
Acknowledgments
We thank the participants who agreed to be interviewed for this
research project, and the staff of the organisations that they
represented, all of whom have contributed to the development of TB
control in East Timor. Caritas Dili (formerly Caritas East Timor), Caritas
Norway, the Ministry of Health of the Democratic Republic of East
Timor, the Northern Territory Department of Health and Community
Services (Australia), WHO, and AusAID are particularly thanked for
their cooperative approach to both the formation of the TB program
and to this research project. Four anonymous reviewers provided
extremely valuable comments that have greatly enhanced this paper.
Author contributions. NM, PMK, and JAG contributed to the
conception and design of the research. NM contributed to the literature
review and conducted interviews. NM, PMK, and JAG contributed to
the data interpretation. ABZ contributed to the data review. NM, PMK,
JAG, and ABZ contributed to the writing of the paper.
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Background. Tuberculosis is an infectious disease and one of the world’s
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deaths every year, most of them in developing countries. The success of
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Why Was This Study Done? The researchers wanted to find out from
the people involved with the program how well they thought it was
performing, what its strengths were, and what remained to be achieved.
The lessons learned could be of use in other countries, particularly those
recovering from civil conflict and other emergencies.
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people involved with the program. Some of them were East Timorese,
and some were from international organizations. The questions asked in
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DA09532, DA13245, DA16159,
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through Health: Learning from Action’’; 6–8 May 2005; Hamilton, Ontario, experiences. Social science theory and methods offer tools to understand the reasons for
from National Institutes of Health
Canada. grants NR08324, MH64388 and economic and ethnic disparities that cause individual suffering and stress at the institutional level.
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33. Merriam SB, Johnson-Bailey J, Lee MY, Kee Y, Ntseane G, et al. (2001) preparation of the manuscript.
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Power and positionality: Negotiating insider/outsider status within and ethnographic data collected by two contemporaneous long-term San Francisco studies, one
across cultures. Int J Lifelong Educ 20: 405–416. Competing Interests: The authors epidemiological and one ethnographic, to explore the impact of ethnicity on street-based
have declared that no competing heroin-injecting men 45 years of age or older who were self-identified as either African
interests exist.
American or white. We triangulated our ethnographic findings by statistically examining 14
Academic Editor: Steve Koester, relevant epidemiological variables stratified by median age and ethnicity. We observed
University of Colorado, United States significant differences in social practices between self-identified African Americans and whites
the people they questioned to have freedom in the way they gave their of America
in our ethnographic social network sample with respect to patterns of (1) drug consumption;
answers; they were not restricted to answering only ‘‘yes’’ or ‘‘no.’’ This (2) income generation; (3) social and institutional relationships; and (4) personal health and
Citation: Bourgois P, Martinez A,
kind of approach, where there is no gathering of precise figures that can
be mathematically analyzed, is known as qualitative research.
Kral A, Edlin BR, Schonberg J, et al. hygiene. African Americans and whites tended to experience different structural relationships
(2006) Reinterpreting ethnic patterns to their shared condition of addiction and poverty. Specifically, this generation of San Francisco
among white and African American
The national tuberculosis program was considered to be working well in injectors grew up as the children of poor rural to urban immigrants in an era (the late 1960s
men who inject heroin: A social
2003. The researchers concluded that good coordination, cooperation, science of medicine approach. PLoS through 1970s) when industrial jobs disappeared and heroin became fashionable. This was also
and collaboration were the most important factors contributing to the Med 3(10): e452. DOI: 10.1371/
successes that had been achieved. The existing local structure and
when violent segregated inner city youth gangs proliferated and the federal government
journal.pmed.0030452
experience of the local NGO, the commitment among local personnel initiated its ‘‘War on Drugs.’’ African Americans had earlier and more negative contact with law
and international advisors to establishing an effective program, and the Received: May 23, 2006 enforcement but maintained long-term ties with their extended families. Most of the whites
willingness of international advisers and local counterparts to be flexible Accepted: September 19, 2006 were expelled from their families when they began engaging in drug-related crime. These
in their approach were also important factors. The feeling among some Published: October 24, 2006 historical-structural conditions generated distinct presentations of self. Whites styled
government health workers that they lacked ‘‘ownership’’ of the
DOI: themselves as outcasts, defeated by addiction. They professed to be injecting heroin to stave
program was one problem that still needed to be overcome.
10.1371/journal.pmed.0030452 off ‘‘dopesickness’’ rather than to seek pleasure. African Americans, in contrast, cast their
What Do These Findings Mean? Even after a major conflict, it was physical addiction as an oppositional pursuit of autonomy and pleasure. They considered
possible to launch an effective tuberculosis program in East Timor. Other Copyright: � 2006 Bourgois et al.
This is an open-access article themselves to be professional outlaws and rejected any appearance of abjection. Many, but not
countries in similar situations might be able to achieve success by all, of these ethnographic findings were corroborated by our epidemiological data, highlighting
distributed under the terms of the
applying the same approach. Unfortunately, renewed conflict broke out
in East Timor in 2006. It will again be necessary to restore services,
Creative Commons Attribution the variability of behaviors within ethnic categories.
License, which permits unrestricted
putting to use the lessons already learned.
use, distribution, and reproduction Conclusions
in any medium, provided the
Additional Information. Please access these Web sites via the online original author and source are Bringing quantitative and qualitative methodologies and perspectives into a collaborative
version of this summary at http://dx.doi.org/10.1371/journal.pmed. credited. dialog among cross-disciplinary researchers highlights the fact that clinical practice must go
0030383.
� Basic information about tuberculosis can be found on the Web site of Abbreviations: HCV, hepatitis C beyond simple racial or cultural categories. A clinical social science approach provides insights
the US National Institute of Allergy and Infectious Diseases virus; NIH, National Institutes of into how sociocultural processes are mediated by historically rooted and institutionally
� The Web site of the World Health Organization’s Stop TB department Health; UHS, Urban Health Study enforced power relations. Recognizing the logical underpinnings of ethnically specific
describes the recommended strategies for tuberculosis control
* To whom correspondence should
behavioral patterns of street-based injectors is the foundation for cultural competence and
� TB Alert, a UK-based charity that promotes tuberculosis awareness for successful clinical relationships. It reduces the risk of suboptimal medical care for an
be addressed. E-mail: philippe.
worldwide, has information on tuberculosis in several European, bourgois@ucsf.edu exceptionally vulnerable and challenging patient population. Social science approaches can
African, and Asian languages
� A country profile of East Timor is available on the BBC Web site also help explain larger-scale patterns of health disparities; inform new approaches to structural
and institutional-level public health initiatives; and enable clinicians to take more leadership in
changing public policies that have negative health consequences.
The Editors’ Summary of this article follows the references.
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Social Medicine in the 21st Century
Introduction
Disparities in health across ethnic and class categories are
widely documented and represent an urgent problem for US
society. Causal explanations for disparities, however, are still
debated [1–4], especially with respect to the relative effects of
class, culture, gender, and access to quality care [5–7]. The
meaning and practice of ‘‘cultural competence’’ in medicine
is debated because of the risk of stereotyping the diversity
that exists within cultural groups [4,8,9]. One population
group that is particularly vulnerable to negative health
outcomes and social stigma is street-based substance abusers
[10–12]. Using a multi-methodological approach, we docu-
ment the variability and complexity, by ethnicity, of factors
and behaviors salient to understanding this population
group.
The National Institutes of Health (NIH) requires research-
ers to document ‘‘race/ethnicity’’ in order to document health
disparities [2]. Racial categories, however, are a social
construct and cannot usefully document genetic differences
or cultural attributes at the level of the individual because of
the greater diversity that exists within large population
groups than between them [13,14] (for sociological critiques
see [15–17]). Furthermore, the NIH and US Census dichotomy
between ethnic and racial categories is logically inconsistent
and reflects politically driven classifications rather than
scientific reality [14]. Hospital-based quantitative researchers
have also found that asking patients to describe their race/
ethnicity in their own words was more effective for tracking
health-related data than was having patients choose from a
set of predetermined categories [18]. The American Anthro-
pological Association advocates abandoning the historically
fraught classification ‘‘race’’ to avoid its misleading implica-
tions, and instead using the more dynamic category ‘‘eth-
nicity’’ [14]. Cultural anthropologists define ethnicity as a
socially contingent identity that is simultaneously imposed on
individuals and is also chosen by them through social
interaction in historically determined contexts [19]. Some
ethnicities become ‘‘racialized’’—a term describing how rigid
distinctions between groups based on skin color and
appearance are created through racism and economic
inequality in a particular social setting and become con-
ceptualized as irrevocable essences determined by genes and/
or culture [20].
There is widespread documentation of epidemiological
patterns to drug use according to ethnicity and age group
[21–23], but the few theoretical explanations that exist
remain speculative [24,25]. African Americans, for example,
are overrepresented among the aging ‘‘baby boom’’ cohort of
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Ethnicity and Heroin Injection
street-based heroin injectors and crack smokers who suffer
increasingly complicated medical conditions, but they are
relatively underrepresented among youth injectors [10,11,26–
28]. A theoretical understanding of drug use as a changing
phenomenon shaped by history and social structure could
facilitate the development of systematic, large-scale health
services delivery interventions and public health initiatives.
At the clinical level, street-based drug injectors often
frustrate practitioners and are costly to institutions
[10,11,29,30].
Aims of This Study
We proposed to build an explanation of different patterns
of drug use and survival strategies between African American
and white street-based heroin injectors through a social
science-based understanding of the large-scale institutional
power constraints that shape individual behavior. Our
approach involved a close examination of the distinct
experiences of street-based illegal drug use among African
Americans and whites in San Francisco, informed by cross-
methodological dialog. Our goal was to elucidate how a basic
science of social medicine might contribute to improvements
in clinical cultural competence toward socially vulnerable
patients without reducing their characteristics and diversity
to a static list of self-destructive behaviors or self-fulfilling
labels. By understanding the social, institutional, and histor-
ical forces that lead to negative health behaviors we hoped to
contribute to formulating targeted, pragmatic prevention
messages in public health [31] and to developing institutional
and policy-level interventions (for examples, see [32–34]).
Methods
Our data derive from a cooperative multidisciplinary effort
of contemporaneous projects, funded by the US NIH, that
includes ethnographic, epidemiological, and clinical compo-
nents. The research team included an ethnographer (PB), a
sociologist (AM), an epidemiologist (AK), an infectious
diseases physician and epidemiologist (BRE), a photoethnog-
rapher (JS), and a physician trained in both qualitative and
quantitative research methods (DC).
Participant-Observation Ethnography
Data sources. Our ethnographic database consists of: (1)
3,600 pages of field notes and transcribed interviews coded in
Atlas.ti software (http://www.atlasti.com), and (2) 600 digitized
images inde xed i n iView Me dia Pro (http://www.
iview-multimedia.com) from our database of over 11,000
photographs taken by JS of street-based drug users in their
natural context. We collected this qualitative and photo-
graphic data in one San Francisco neighborhood through
participant-observation fieldwork from November 1994 to
November 2004 in the injection sites and homeless encamp-
ments that anchored a social network of approximately two
dozen white, Latino, and African American street-based
heroin addicts. (For an example of an injection site see
photo by JS at http://www.publicanthropology.org/
Photogallery/B&S-Sid-in-Hole.htm.) The total membership
of the group fluctuated at any given moment as individuals
left or returned to the scene due to arrest, treatment, relapse,
out-migration, illness, and death. Over ten years, conse-
quently, we collected detailed field notes, tape recordings
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(including life histories), and photographic documentation
on over 70 individuals. Approximately 20% of our research
participants were Latinos and Latinas, and 10% were women.
We limit our discussion to the African American and white
men in our sample because of space constraints and sample
size. Furthermore, the Latino and Latina injectors drew less
consistent boundaries around themselves. They sometimes
shifted their ethnic identification according to nationality
and length of stay in the US depending on the context of a
particular social interaction. Some identified around a
racialized identity and others did not.
Theoretical framing and ethnographic technique. Our
ethnographic research design and coding strategy was guided
by a social science theoretical understanding of the link
between large-scale power relations and individual risky
practices that shape the spread of blood-borne disease among
injectors. We focused data collection, consequently, on how
ethnicity, gender, sexuality, status hierarchies, and income-
generation options interface with drug consumption practices
and survival strategies. Following Kleinman et al.’s [35]
strategy of eliciting explanatory models (for an application
see chapter 17 in [36]) to understand nonadherent patients, we
conducted conversational interviews in the natural environ-
ments of street-based injectors and clinicians to assess the
mechanisms that result in negative (as well as positive)
interactions with medical and social services. We documented
the conceptualizations of both clinical service providers and
patients.
We identified and explored the vital social structural and
institutional interfaces of street-based substance users with
the broader society in five domains: (1) law enforcement; (2)
social services; (3) medical care; (4) modalities of income
generation; and (5) social support arrangements. We also
observed interfaces with the general public, family members,
and institutional representatives on the street, in homes, and
at public offices—including the county hospital, community-
based clinics, and jail. We simultaneously collected both self-
report and observational qualitative data. This technique
allowed us to repeatedly triangulate self-reported risk with
directly observed risk-taking as it occurred in its natural
context to increase accuracy, and to probe respondents’
understanding of risk-taking. The ethnographers (PB and JS)
spent nights in homeless encampments and accompanied
individuals on their sorties in search of income and drugs.
Photoethnography. Conversations and interactions were
tape-recorded and/or photographed following an informed
consent protocol approved by the Internal Review Board of the
University of California San Francisco (see Texts S1 and S2 for
sample consent forms). Photoethnographic participant-obser-
vation data collection represents a special ethical challenge
[37,38] and requires the active collaboration of respondents for
full access to documenting intimate daily routines on a regular
basis. Photographs taken in the natural environment can
powerfully supplement and triangulate with ethnographic and
statistical data. Pictures document for subsequent examination
social interactions and the details of material environment,
technology use, and body language that are often missed by
observers during the spur of the moment or are altered
retrospectively when self-reported. We also gave our research
participants copies of their photographs and asked for com-
ments. In addition to allowing confirmation of permission for
publication, this ‘‘photo-elicitation’’ method of conversational
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Social Medicine in the 21st Century
Ethnicity and Heroin Injection
interviewing [39] generated further detailed self-report and
self-reflection. (For examples see photos by JS at http://www.
publicanthropology.org/Photogallery/B&S-HankwithFlag.htm
and http://www.publicanthropology.org/Photogallery/
B&S-Mindy&Petey.htm.)
Epidemiological Data
Our epidemiological data draw from the Urban Health
Study (UHS; University of California, San Francisco) database
of over 30,000 interviews with more than 12,000 injection
drug users from 37 semiannual cross-sections from 1986 to
2005 [40,41]. The UHS administered sociodemographic and
behavioral face-to-face interviews and blood draws (for HIV
and hepatitis C virus [HCV] testing) in single-room occu-
pancy hotels, churches, and community-based meeting
venues located in five neighborhoods in San Francisco where
drug users congregate on the streets: Bayview, Mission,
Tenderloin, Western Addition, and South of Market. The
UHS used targeted sampling methods to recruit a commun-
ity-based sample of active injectors every six months in each
neighborhood [42]. Persons aged 18 years or older who had
injected illicit drugs in the previous 30 days (as confirmed
through visual inspection of injection stigmata) or who had
previously participated in the UHS were eligible for
participation. They were allowed to participate as often as
every six months. Participants received pre- and post-HIV/
HCV test counseling and a small stipend ($15–$20/visit).
Clinical Ethnography
Our clinical database is primarily qualitative and observa-
tional and consists of 250 pages of field notes drawn from
clinical practice (by DC) in the natural environment of the
ethnographic sample and in alternative community-based
service sites. In addition, in-depth qualitative interviews were
conducted (by DC) with approximately 70 individuals re-
cruited through the epidemiological study to further explore
the clinical implications of our qualitative and quantitative
data. Clinical inquiry focused on injection technique, includ-
ing routes, sites, and skin hygiene, as related to risks for
bacterial infection, for example abscess and cellulitis.
Integrated Collaborative Study
Toward the end of this cross-methodological collaboration
(2004–2005) we developed a ‘‘strategically targeted intensive
case study’’ protocol to collect supplemental qualitative data
on a dozen individuals who were not members of our original
ethnographic social network sample, but who had behavioral
profiles that warranted further exploration. These partic-
ipants were strategically identified through the epidemiolog-
ical interviews in the last rounds of the UHS cross-section and
immediately referred to the ethnographic team, who then
engaged in qualitative follow-up with these individuals in
their natural street environment. Exploring counterfactual
cases that were identified through the epidemiological infra-
structure enabled a more in-depth understanding of the
behaviors and characteristics identified as salient by our
preliminary analysis. The strategically targeted follow-up
cases represented the only new ethnographic data specifically
collected through the epidemiological collaboration, and
they diversified the reach of our original ethnographic
sample. All the qualitative clinical data, in contrast, were
collected in ongoing dialog with both the ethnographic and
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Social Medicine in the 21st Century
epidemiological projects dating back to before 2000. The
clinical research informed both the ethnographic and
epidemiological studies by extending and focusing ethno-
graphic observations around medically relevant practices and
contributing to questionnaire development. Clinical obser-
vations also contributed to developing hypotheses regarding
modes of injection, vein scarring, and soft tissue infection.
Analysis
The current analysis required extensive review of pre-
viously collected ethnographic material in collaborative
dialog among the ethnographic, clinical, and epidemiological
investigators. This dialog involved iterative analyses of the
previously collected epidemiological database of street-based
injectors interviewed during the period 2000–2005 in San
Francisco (n ¼ 6,655). First, we situated our small, purposeful
ethnographic network sample demographically and behav-
iorally within this large UHS sample to abstract a relevant
sociodemographic subsample (Table 1) that consisted of all
the UHS respondents interviewed between the years 2000 and
2005 who were men reporting daily heroin injection and who
identified themselves as either African American or white (n ¼
1,068). (In the larger UHS sample, 26% were women and 6.7%
were Latinos or Latinas.) We then identified 14 variables on
the UHS questionnaire as relevant to test the patterns
identified by our ethnographic data and our clinical
observations. We also stratified those variables by the ethnic
categories African American and white and by the median
age of UHS respondents in 2002 (45 years), which was also the
age of the youngest ethnographic research participant. We
stratified by age because in a separate ethnographic study
among youth injectors in San Francisco [6] we found that
street-based injectors maintained age-segregated social net-
works and tended to differentiate themselves as being
members of a younger versus an older generation. We tested
whether observed epidemiological differences by ethnicity
were statistically significant by conducting Chi-square tests
and Fisher exact tests for parametric categorical variables,
and Student t-test (parametric) and Wilcoxon rank test
(nonparametric) for continuous variables (Table 1).
Our cross-methodological quantitative/qualitative analyti-
cal dialog was purposefully iterative to synthesize hypotheses
and data: Ethnographic observations generated hypotheses;
hypotheses led to further empiric analyses; and data subse-
quently generated further hypotheses. This process enabled us
to explore subtle dimensions of identity and social processes, as
well as potential biases in the data due to the collection of
socially desirable self-reports on the taboo subjects of drugs,
sex, and crime in both our quantitative and qualitative data.
Results
Income-Generating Strategies and Social Interactions
Our ethnographic observations revealed antagonistic in-
teractions between street-based African American and white
heroin injectors who survived in the same public spaces.
Despite routinely purchasing drugs together and sharing
injection paraphernalia, they identified themselves as separate
groups based on skin color. They considered this distinction
to be self-evident and justified their sense of difference in
terms of moral worth and personal dignity. They routinely
referred to one another with racist epithets and derogatory
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Social Medicine in the 21st Century
Ethnicity and Heroin Injection Ethnicity and Heroin Injection
dictums. In short, the group identities of ‘‘African American’’
and ‘‘white’’ are socially constructed, racialized ethnicities. Table 1. Distributions of Selected Behaviors by Age and Race among Male Heroin Injectors in San Francisco, 2000–2005 (n ¼ 1,068)
Their sense of difference was organized through opposition to
one another in everyday interactions [19]. Age Category Characteristic African Americansa Whitesa p-Value
Our ethnographic field notes, tape recordings, and photo-
graphs documented that most African American heroin 45 years or older Any sex in past 6 mo 73% 45% ,0.001
Income from panhandling in past 6 mo 16% 32% ,0.001
injectors conceived of themselves as successful outlaws. The
Income from a job in past 6 mo 24% 22% ns
participants in our study generated the majority of their Income from illegal sources in past 6 mo 32% 26% ns
income through petty crime and/or through short-term Income from social services in past 6 mo 45% 42% ns
service-related income generation such as washing car Income from family/friends in past 6 mo 29% 30% ns
windows at gas stations. They considered passive panhandling Currently homeless 60% 71% 0.015
Lifetime incarceration 72% 56% 0.001
to be demeaning and rejected formal day labor as exploitative. Median years of incarceration 10 y 6.7 y 0.001
They often hid the fact that they were homeless or marginally Median days smoked crack in past 30 d 10 d 4.0 d 0.02
housed. They tended to dress in up-to-date fashions and Speedball injection in past 6 mo 53% 39% 0.004
strove to maintain a public appearance of being in control of Cocaine injection in past 6 mo 19% 16% ns
their lives. They actively maintained relationships with a wide Any methadone use in past 12 mo 25% 44% ,0.001
Abscess in past 12 mo 44% 55% 0.04
range of acquaintances in the larger society, including their Under 45 years Any sex in past 6 mo 81% 60% ,0.001
families, often visiting extended kin on holidays and birthdays. Income from panhandling in past 6 mo 18% 40% ,0.001
Most actively pursued romantic heterosexual relationships Income from a job in past 6 mo 31% 27% ns
and asserted with pride that they were sexually active. They Income from illegal sources in past 6 mo 29% 34% ns
Income from social services in past 6 mo 42% 39% ns
thought of themselves as effective professional outlaws. Income from family/friends in past 6 mo 25% 36% 0.05
The white participants, in contrast, tended to consider Currently homeless 56% 80% ,0.001
themselves destitute outcasts. They expressed a sense of Lifetime incarceration 72% 44% ,0.001
decrepitude, passivity, and crisis. They subscribed to a Median years of incarceration 7.9 y 5.0 y 0.055
Median days smoked crack in past 30 d 10 d 2.0 d ,0.001
medicalized conception of addiction as a disease and referred Speedball injection in past 6 mo 52% 55% ns
to themselves as being ‘‘sick.’’ Most maintained no relation- Cocaine injection in past 6 mo 16% 30% 0.001
ship with their families and they often wore tattered clothes Any methadone use in past 12 mo 26% 32% ns
and appeared disheveled. Most reported erectile dysfunction Abscess in past 12 mo 37% 50% 0.02
without embarrassment, and claimed not to be interested in
either sex or romance. Consistent with their defeated a
Values expressed as percentages were calculated from the total number of injectors in the respective age and ethnic group. Totals in study: African Americans � 45 y, n ¼ 341; whites �
demeanor, the whites generated most of their income 45 y, n ¼ 209; African Americans , 45 y, n ¼ 112; and whites , 45 y, n ¼ 406.
ns, not significant.
through passive panhandling, although they also performed DOI: 10.1371/journal.pmed.0030452.t001
day labor for local business owners on an hourly or piece-rate
basis, often at below minimum wage. They referred to trajectories of the African Americans and the whites, a teenage gang. He qualified that self-report, however, by
themselves as homeless and publicly projected that assertion however, differed. African American male injectors followed laughing at his ethnic exceptionalism, ‘‘I was the only white
(even when they had access to housing) to solicit help. distinct adolescent paths into careers of long-term heroin boy living in the projects and I was the only white in the
All of these ethnic distinctions were documented in addiction and unemployment in a historical era of inner-city Medallions [gang].’’ The whites, consequently, were generally
hundreds of coded entries from our notes, transcripts, and deindustrialization [43–46] that coincided with the initiation not incarcerated until they engaged in crime associated with
photographs, and the patterns repeated themselves with of the ‘‘War on Drugs’’ by President Nixon in 1971. Our life their physical dependence on heroin in their early 20s.
relatively few exceptions to the point of saturation. Fur- history tape recordings revealed that identifiable institutional Almost all of the street-based injectors in our ethnographic
thermore, most of the inconsistencies that we documented in and social structural forces shaped a more outlaw-identified sample were routinely searched, evicted, and ticketed by the
these patterns were either expected because of context, or street-based persona among young African Americans than police and occasionally arrested. Law enforcement activities
were noted as being anomalous by respondents on the street. among young whites. Consistent with findings reported in the sometimes directly interfered (occasionally purposefully) with
Seven questions from the epidemiological survey directly social science literature on the California economy [44,47,48], accessing medical and public health services. On several
addressed specific components of the overall ethnic personae most of the African Americans reported that their fathers occasions, for example, the police confiscated prescribed
outlined above: Among heroin injectors 45 years and older, were laid off from manual labor jobs in San Francisco when medications and bandage supplies. Possession of syringes
African Americans were less likely than whites to report that industrial work disappeared. Many explained that their (obtained at the legal, public health-funded needle exchange
they were ‘‘homeless’’ (60% versus 72%; p ¼ 0.006). African
parents had emigrated from the Deep South to find work in program) was the most frequent precipitating factor for arrest
Americans were more likely to report having ‘‘any sex with
the San Francisco shipyards during World War II. They or ticketing among both African Americans and whites.
women in the past 6 months’’ than whites (73% versus 47%; p
referred explicitly to the poverty and racism that prevailed in (Possession of syringes without a prescription for needle
, 0.001) and less likely to report receiving income from
their parents’ communities of origin. Most had visited their exchange attendees in San Francisco was illegal until 2005.)
panhandling (17% versus 33%; p , 0.001). All of these
parents’ hometowns and they still occasionally attended More pervasively, the logistical chaos caused by intermittent
quantitative associations supported the ethnographic find-
regional family reunions. All of the African Americans evictions from homeless encampments and confiscation of
ings. There were no significant differences between the two
reported juvenile incarceration for gang activity during their possessions contributed to missing outpatient appointments.
groups, however, for income generated from legal employ-
teenage years before they started injecting heroin. More subtly, purposefully antagonistic treatment by law
ment, illegal sources, social services, or family friends (Table
1). All of these comparative ethnic patterns also held among Many of the whites also referred to the poor, rural origin of enforcement officers also set the tone for hostility and distrust
the under-45-year-old injectors (Table 1). their parents, but few knew the details of their home in interactions with all state-funded service institutions,
communities. Most were employed as adolescents in the small especially on the part of African Americans who subscribed
Childhood Socialization and Institutional Interactions businesses established by their parents after immigrating to to the outlaw persona. We observed greater and more
Most of the injectors in the ethnographic network grew up San Francisco (e.g., sign painting, bartending, or foundry antagonistic police surveillance of African Americans than
in San Francisco in impoverished households. The childhood work). Only one of the whites reported former membership in whites. African Americans sometimes responded opposition-
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Social Medicine in the 21st Century
ally to law enforcement, resulting in escalated cycles of negative
contact. For example, African Americans were more likely than
whites to protest verbally when ticketed and to drink alcohol in
public without hiding their bottles in a paper bag. They also
more frequently displayed the intoxicating effects of their
heroin consumption (‘‘nodded out’’) in public venues.
We consulted California court records to verify the lifetime
adult incarceration self-reports of our ethnographic respond-
ents. Everyone had been incarcerated more than once, but
the African Americans had spent more time in prison over
their lifetimes. We identified two questions on the epidemio-
logical survey that addressed socialization into crime, and
both support the ethnographic data. Among the older (� 45
y) injectors, a higher proportion of African Americans
reported having been incarcerated during their lifetimes
(71% versus 57%; p ¼ 0.002) and the median number of years
spent in prison (among those who had at least one week of
incarceration) was higher for African Americans (10 y versus
7 y; p ¼ 0.002). This pattern also held for younger injectors,
except that the difference in median years of incarceration
was not statistically significant (Table 1).
Ethnic Patterns to Polydrug Consumption and Modes of
Injection
Both the whites and African Americans in our ethnographic
social network sample explicitly identified themselves as
‘‘heroin addicts.’’ Once their physical and psychological
craving for heroin was satisfied, however, they consumed
different psychoactive substances. The whites tended to buy
inexpensive fortified wine (primarily Cisco Berry brand) with
their extra money, while the African Americans usually sought
crack (cocaine hydrochloride converted into its base, i.e.,
smokeable form). Many of the whites drank heavily and often
fell asleep around sunset, while the African Americans
frequently stayed up through the night smoking crack. Most
of the whites smoked crack occasionally when the opportunity
presented itself, but—with a few notable exceptions—they did
not actively seek it out. Furthermore, whites who smoked
crack intensively were criticized by other whites in explicitly
racist language for ‘‘behaving like a n. . .[expletive deleted].’’
Both the whites and African Americans said they preferred
to inject heroin intravenously rather than subcutaneously or
intramuscularly, because of the initial ‘‘rush’’ of pleasure
provided by a direct dose of opiates into a vein. Their veins,
however, were scarred by lifetime careers of daily multiple
injections of heroin. All the whites claimed that this scarring
made it difficult for them to locate a vein. They often
administered their injections subcutaneously into body fat
(see again photo by JS at http://www.publicanthropology.org/
Photogallery/B&S-Mindy&Petey.htm), sometimes directly
through their clothes, without seeking a vein. Consistent with
their overall sense of failure as outcasts, many of the whites
claimed that they had given up pursuit of the intravenous
rush of intoxication; they also relied on methadone treatment
and/or detoxification programs more frequently. They
claimed not to be able to ‘‘get high’’ from heroin any more.
In contrast, the African Americans in our social network
most often managed to find a vein in which to inject heroin
intravenously. As part of their socially constructed identity,
they actively pursued an ecstatic rush of intoxication. Unlike
the whites, they did not conceive of themselves as passively
staving off opiate withdrawal symptoms. African Americans,
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Ethnicity and Heroin Injection
consequently, took more time, often over 20 minutes to
administer their intravenous injections with determined
effort. In an often visibly bloody procedure they repeatedly
probed with their needles, sometimes seeking dangerous
injection sites such as the jugular (see photo by JS at
http://www.publicanthropology.org/Photogallery/
B&S-Hank-Fixes-Jesse.htm) or brachial veins. Similarly, when
they generated windfall income, they sometimes celebrated
by injecting a mixture of heroin and cocaine (known in street
parlance as a ‘‘speedball’’ despite containing no ‘‘speed,’’ i.e.,
methamphetamine) [49]. Consistent with the known risks of
subcutaneous heroin injection, the whites suffered more
abscesses than the African Americans [50–52]. The photo-
graphic data were especially useful for documenting ethnic
distinctions with respect to injection techniques as well as
abscesses.
Five questions from the epidemiological survey directly
addressed the ethnic components of drug consumption
patterns outlined above: Older African Americans reported
having smoked crack on a median of 10 days in the past 30
days as compared with 4 days among older whites (p ¼ 0.02).
Older African Americans also reported significantly more
speedball injections (53% versus 41%; p ¼ 0.005) and margin-
ally (although not significantly) more cocaine injections (19%
versus 16%; ns). They were also significantly less likely to
report methadone use in the past year (24% versus 43%; p ,
0.001) or having had an abscess (44% versus 54%; p ¼ 0.03) in
the past year. Among younger injectors, similar differences
between African Americans and whites were found in crack
smoking, injecting speedballs, and having abscesses, but the
difference in methadone use was not significant (Table 1), and
cocaine injection was more common among whites than
African Americans (31% versus 15%; p ¼ 0.001).
We expected the difference in the prevalence of abscesses
between African Americans and whites to be larger given our
strong ethnographic findings on ethnically distinct techni-
ques of administering heroin injections. Socially desirable
reporting should, if anything, have further accentuated this
difference, since all the African Americans in our ethno-
graphic sample were embarrassed when they had an abscess.
To explore this further, five of our 12 strategically targeted
follow-up case study interviews were directed at African
American injectors who reported having abscesses in the
quantitative study. Without being told of our hypothesis,
three of the respondents spontaneously described their
exceptionalism and two referred specifically to transgressing
ethnic norms. One explained that he reported his identity as
‘‘black’’ on forms, but was actually ‘‘half Japanese.’’ He had a
white ‘‘running partner’’ with whom he regularly injected
subcutaneously. Another, who had self-identified as African
American on the questionnaire, specified that he was ‘‘really
Puerto Rican’’ and had a white, gay partner. The third
defensively dismissed his abscess as a ‘‘missed speedball
injection’’ and claimed it was the first soft tissue infection
in his long career of injection drug use.
Discussion
Our cross-methodological inquiry found substantial agree-
ment between the ethnographic and epidemiological data.
Among older injectors, statistically significant differences
were found in nine of the 14 epidemiological variables that
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our ethnographic data and clinical observations predicted
would differ between older African Americans and older
whites. There were some discrepancies, however, between the
ethnographic and epidemiological data. On five of the 14
variables older African Americans and older whites did not
differ significantly (cocaine injection and income from: job,
illegal sources, social services, and family/friends), contrary to
what we expected from our ethnographic data. Furthermore,
in several of the variables that differed significantly, the
differences were considerably smaller than anticipated.
Some of these differences between the ethnographic and
epidemiological data are worthy of interpretation. The
unexpected lack of difference with respect to cocaine
injection may be due to the fact that the UHS samples a
wider range of white social networks in which cocaine is more
prevalent than in our ethnographic sample, such as among
sex workers or among higher status street injectors. The lack
of statistical significance for most of the income variables, on
the other hand, may simply be due to recall error and/or to
social desirability bias, especially when reporting criminal
versus legal income in a formal, face-to-face interview. Most
importantly, the epidemiological data indicate that in every-
day practice individuals often violated the ‘‘ethnic ideal
types’’ that we identified ethnographically. The small differ-
ences between African Americans and whites on several of
the variables demonstrate the risk of stereotyping racial and
cultural categories. For example, even though older African
Americans were significantly less likely to report income from
panhandling, a practice they considered low in prestige, 17%
still reported that source of income. Similarly, although we
never observed older whites purposefully injecting speedballs
during our decade of ethnographic fieldwork, 41% of whites
on the epidemiological survey reported having injected a
speedball in the last 30 days. Furthermore, even when
distinctions were substantial between ethnic groups on a
variable, diversity around those distinctions existed among
individual members within the same ethnic group.
Our ethnographic data suggest that the meaning of
ethnicity is affected by ‘‘social structural’’ forces such as the
existence of youth gangs, the disappearance of industrial jobs,
the segregation of neighborhoods, and the organization of
families, which in turn are also affected by public policies
such as law enforcement, public education, or job training.
The congruence of these macro-power vectors may explain
the generational ethnic patterns in drug use and home-
lessness that have been documented by ethnographers
[24,27,53], epidemiologists [21,54,55], and historians [23].
For example, the outlaw persona that most of the older
African Americans in our ethnographic network projected
can be understood as a specific relationship to a definition of
masculine dignity that was persuasive for a historical cohort
of poorly educated, young inner city men from working-class
families headed by parents who were rural immigrants fleeing
the economic servitude and racist legislation of the Deep
South [56,57]. This older generation of African American
heroin addicts came of age in San Francisco in the 1960s and
70s when heroin was fashionable and readily available to
street-based youth who celebrated an oppositional outlaw
identity. The loss of unionized jobs for high school drop-outs
simultaneous with the rise of segregated youth gangs in
Californian inner cities that excluded whites in the mid-1970s
and decreased funding for public schools in impoverished
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Ethnicity and Heroin Injection
neighborhoods resulted in the disproportionate incarcera-
tion of African American teenagers for gang fighting. This
pattern is consistent with national statistics revealing that
urban African American and Latino communities experi-
enced the brunt of the expansion of incarceration rates
under the prosecution of the War on Drugs [58]. In this
institutional and political economic context, masculine
models of achievement among a subgroup of poor African
American youth may have shifted away from the legal manual
labor employment that their parents had actively sought.
Clinical Implications
Clinically oriented ethnographic research provides rich
contextual data that can help explain problems and para-
doxes affecting the health and health care of populations. It
can also offer interpretations of epidemiological data as well
as socially plausible causal explanations for associations.
Bringing quantitative and qualitative perspectives into con-
versation among researchers collaborating across disciplines
has the potential to create an analysis that is richer than the
sum of its parts, especially for clinicians who rely on
quantitative evidence-based data, but whose practices include
diverse patients with complex case histories [59,60].
Understanding patients—their histories, perspectives, and
expectations—enables successful clinical encounters. The
anthropological technique of cultural relativism, which is
distinguished by suspension of moral judgment, self-reflec-
tion on biases, and an attempt to see the clinical encounter
through the eyes of oppositional patients is key to this
endeavor. Clinical practices and protocols can benefit from
an understanding of how risk behavior and resistance to
authority are ethnically scripted. When we accompanied
injectors to the county hospital we sometimes observed
confrontational interactions with hospital staff and medical
practitioners. If oppositional behavior is taken at face value
and is treated as a personal, racial, or fixed cultural
characteristic, health care providers may define patients as
belligerent and cease attempting to deliver optimal care. For
example, behaviors that are seen as unacceptable in the clinic,
such as cursing, shouting, threatening, and acting angry may
be seen by the patient as functional and respected—even
dignified—ways of asserting one’s rights, self-control, and
intelligence on the street. Clinicians who recognize the
‘‘outlaw’’ and ‘‘outcast’’ as socially determined personae,
and who understand the dramatic social structural vulner-
abilities that can prevent patients from interacting effectively
in health care settings, may be able to engage more
productively with these challenging and nonadherent pa-
tients. Effective clinicians set clear, explicit expectations and
respond consistently to behaviors that violate those expect-
ations, without terminating or withholding care unless
absolutely necessary [34,61]. (See also pp. 164–167 in [61].)
One under-reported aspect of culturally competent care
potentially benefits clinicians because more understanding
may cause less frustration. In our observations of clinical
interactions, physicians often reported encounters as frus-
trating even when the street-based injector felt that it was
positive. On several occasions exhausted medical residents
who were well liked by our participants broke down when
describing their cases to us. They interpreted the opposi-
tional and nonadherent behavior of their patients as a
personal affront. Disengaging from this sense of personal
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Social Medicine in the 21st Century
betrayal and/or failure is key to improving the clinical
relationship with challenging populations. Furthermore, we
found that even when behaving negatively in the clinical
encounter, street-based injectors often wanted more care but
faced logistical challenges to adhering to medical instructions
due to their precarious physical living conditions (see photo
by JS at http://www.publicanthropology.org/Photogallery/
B&SFelix-recuperates.htm). The most frequent complaints
to us by older injectors revolved around early release from
inpatient care and refusal of admission to emergency care.
(The patient shown in the intensive care unit photo by JS
at http://www.publicanthropology.org/Photogallery/
B&S-Jesse,Hank,Petey.htm spent six weeks in the hospital
recovering from hepatic failure. The day before falling
unconscious, he insisted that he was not ‘‘sick enough’’ to
warrant admission when the photoethnographer offered to
drive him to the emergency room. This photograph also
reveals a cross-ethnic expression of solidarity and emotional
vulnerability in the safety of the intensive care unit.) In sum, a
culturally and institutionally competent understanding of
ethnic populations of drug injectors may reduce difficult
clinical interactions and resultant physician frustration while
improving patient access and adherence to care—and
diminish extreme forms of suffering.
Two of the epidemiological variables we used to explore
ethnic distinctions directly measured health outcome and
clinical care delivery—self-reported abscesses and receipt of
methadone treatment. Consistent with national epidemio-
logical data [62], our methadone findings suggest that
institutional barriers blocking African American access to
methadone treatment need to be addressed. Our ethno-
graphic findings confirm the anthropological literature from
across the US suggesting that methadone clinics are organ-
ized in a manner that is overbearing and repressive to many
patients. Some injectors, especially self-respecting outlaws,
consider methadone maintenance to be a badge of shame
[63–66]. (We did not include HCV and HIV infection as
variables for ethnic comparison, because HCV is highly
infectious and exceedingly prevalent in our population. HIV,
in contrast, has a relatively low prevalence and responds to
many confounding behavioral and structural risks. Every
member of our ethnographic network was HCV positive,
compared to 85.1% of the larger UHS sample of men who
inject heroin. Only one member of our ethnographic sample
was HIV positive, and he was the only man to report having
sex with men. Overall HIV prevalence in the larger UHS
sample of men was 9.1%.)
Ethnic differences in injection practices may explain the
higher rates of abscesses among white injectors, but they do
not sanction ethnic-specific clinical and preventive practices.
Clinicians can engage effectively with injectors of any
ethnicity by discussing practices that promote vein longevity
[67,68] and that reduce bacterial and viral infection risks
[69,70]. (See again photos by JS at http://ww w.
publicanthropology.org/Photogallery/B&S-Sid-in-Hole.htm
and http://www.publicanthropology.org/Photogallery/
B&S-Mindy&Petey.htm, to note the practical challenges to
adhering to hygienic injection practices on the street.) On an
institutional level, outpatient wound clinics specializing in
management of injection-related complications in a non-
judgmental manner can provide a high level of care at less
expense than the inpatient and emergency units at which
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Ethnicity and Heroin Injection
most injectors access abscess care [32,71]. Similarly, needle
exchanges and clinics tailored for specific categories of
injectors such as youth, women, sex workers, or men who
have sex with men can bring especially high-risk drug users
into regular contact with treatment and prevention services.
Public health institutions and clinicians are in an effective
position to take more leadership to reduce the unintended
negative consequences of law enforcement practices on the
health of street-based populations. The efforts of clinicians
and public health outreach workers are too often directly
contradicted by police in the very same community—
especially when officers aggressively confiscate the posses-
sions of street people and repeatedly search suspected addicts
for syringe possession [72–78]. Addressing the unintended
health consequences of law enforcement at both the policy
and the community level is especially important for African
American injectors who are in disproportionately negative
contact with the police. More broadly, regardless of the
ethnicity of patients, clinical and public health initiatives are
most successful when they lower barriers to care by engaging
drug injectors nonjudgmentally around risk reduction to
prevent the harm associated with drug use. These approaches
do not necessarily demand abstinence as a prerequisite for
accessing services and are generally referred to as ‘‘risk
reduction’’ or ‘‘harm reduction’’ (see, for example, the World
Health Organization definition of the term [79]).
Limitations
Self-report distortion with respect to sex, drugs, and crime
is well documented in both the ethnographic [49,59] and
epidemiological literatures [80–84]. An NIH/National Insti-
tute on Drug Abuse-funded cooperative agreement, for
example, documented validity and test-retest reliability for
injection drug use data, but low reliability for the details of
needle sharing practices [85–87] The challenge posed by
socially desirable responses is not limited to quantitative data.
All of the older injectors had received public health
counseling on numerous occasions and knew the details of
HIV transmission risk through injection practices. In the
shooting encampments, for example, we photographed
addicts engaging in unsanitary sharing of paraphernalia at
the same instant that we tape recorded them asserting their
commitment never to share paraphernalia.
Our ethnographic research participants do not represent
the range of street-based injection drug users in San Francisco,
because we purposefully limited our sample to one social
network of older heroin injectors to document risk behavior
through participant observation in a natural setting. Our
qualitative data benefit from being put in quantitative context
within the large UHS epidemiological database, but their
generalizability remains limited. Ethnographic methods are
subjective by definition. An ethnographer’s personality and
theoretical orientation as well as the serendipity of everyday
social interaction affect access to participant-observation data.
Our epidemiological data benefited from 17 years of
community-based sampling and interviewing by an experi-
enced staff. Targeted sampling avoids the selection bias
inherent in recruiting drug users from institutions such as
clinics, emergency rooms, substance abuse treatment facili-
ties, or the criminal justice system. It is not possible, however,
to obtain a definitively representative sample of hidden
populations who engage in illegal drug use. Our street-based
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recruitment disproportionately sampled injectors who were
able to participate in study procedures during daytime hours;
those who wanted and needed the nominal stipends we
offered; those who were willing to identify themselves to
study staff (and other study participants in their community)
as illicit drug injectors; and those who liked their previous
experiences when participating in the UHS. Finally, age
effects are part of the African American versus white
differences we are documenting epidemiologically, and they
may also confound the ethnic categories, because African
Americans had a higher median age than whites in all
quartiles (49 years [interquartile range 45–53] versus 40 years
[interquartile range 33–47]).
Conclusion: Replacing Race with Ethnicity
Merging epidemiological, clinical, and ethnographic data
demonstrates the importance of understanding ethnicity as a
product of social and historical configurations. An individ-
ual’s relationship to ethnic ways of being in the world is fluid
and changes over time. It is shaped by identifiable social
structural forces including immigration patterns, labor
market segmentation, and social and spatial interaction.
The variable ‘‘race’’ that is collected on all NIH-funded
studies is more usefully understood as a socially constructed
form of ethnicity that is specific to the US, where skin color
imposes an experience of racism at the everyday level which
sometimes results in distinct patterns of behaviors, values,
and demographic characteristics.
Clinical cultural competence requires an awareness of the
social embeddedness of individuals and populations. Under-
standing the social and structural forces that affect group
identities allows for a better appreciation of the variation in
individual behaviors that harm health. It also provides a tool
for reducing institutional barriers to optimal care for socially
vulnerable populations. Excellent cultural competency re-
quires an excellent evidence base. Sociobehavioral epidemi-
ology needs to expand its database on the social and cultural
determinants of health and health disparities, including
deeper exploration through multidisciplinary approaches of
the underlying reasons for observed associations or differ-
ences. Social epidemiology requires not only the usual
standard of biological plausibility to identify credible casual
associations, but also social plausibility. Providing clinicians
and public health advocates with the tools to identify the
social and structural logics that produce nonadherent
behaviors that appear to be racially inscribed or to be the
product of individual malevolence may be a first step toward
addressing economic and ethnic disparities in health.
Supporting Information
Alternative Language Abstract S1. Italian abstract by Alessandro De
Giorgi with editing by Stefania De Petris
Found at DOI: 10.1371/journal.pmed.0030452.sd001 (28 KB DOC).
Alternative Language Abstract S2. Spanish abstract by Fernando
Montero Castrillo
Found at DOI: 10.1371/journal.pmed.0030452.sd002 (27 KB DOC).
Alternative Language Abstract S3. French abstract by Alison Hath-
away
Found at DOI: 10.1371/journal.pmed.0030452.sd003 (29 KB DOC).
Text S1. Sample Consent Form: Clinical
Found at DOI: 10.1371/journal.pmed.0030452.sd004 (33 KB DOC).
iMedPub :: Thematic collections :: Volume 1
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Social Medicine in the 21st Century
Ethnicity and Heroin Injection
Text S2. Sample Consent Form: Epidemiology
Found at DOI: 10.1371/journal.pmed.0030452.sd005 (38 KB DOC).
Acknowledgments
We thank our study participants for allowing us to document their
lives. Seth Holmes and three external reviewers provided helpful
comments. Laurie Hart’s detailed edits and restructuring of our
argument were most helpful. Ann Magruder did most of the typing
and formatting with help from Emiliano Bourgois-Chacón and
Xarene Eskandar. Fernando Montero Castrillo, Alessandro De Giorgi,
Stefania De Petris, and Alison Hathaway kindly translated the
abstracts under time constraints.
Author contributions. PB, AK, BRE, and DC designed the
collaborative study. PB, AM, AK, JS, and DC analyzed the data. PB,
AM, AK, BRE, JS, and DC contributed to writing the paper. PB and JS
collected ethnographic data. AM ran the statistics. AK collected
epidemiological data. BRE served as Director of the UHS from 1997
through 2002 and supervised the study design, including the
questionnaires, the policies and procedures for the field staff, and
the management of the data. JS collected photographic data. DC
coordinated the interdisciplinary analyses between anthropological
and epidemiological researchers.
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81. Catania JA, Gibson DR, Marin B, Coates TJ, Greenblatt RM (1990) Response
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Editors’ Summary
Background. There are stark differences in the health of different ethnic
groups in America. For example, the life expectancy for white men is 75.4
years, but it is only 69.2 years for African-American men. The reasons
behind these disparities are unclear, though there are several possible
explanations. Perhaps, for example, different ethnic groups are treated
differently by health professionals (with some groups receiving poorer
quality health care). Or maybe the health disparities are due to
differences across ethnic groups in income level (we know that richer
people are healthier). These disparities are likely to persist unless we gain
a better understanding of how they arise.
Why Was This Study Done? The researchers wanted to study the health
of a very vulnerable community of people: heroin users living on the
streets in the San Francisco Bay Area. The health status of this
community is extremely poor, and its members are highly stigma-
tized—including by health professionals themselves. The researchers
wanted to know whether African American men and white men who live
on the streets have a different pattern of drug use, whether they adopt
varying strategies for survival, and whether they have different personal
histories. Knowledge of such differences would help the health
community to provide more tailored and culturally appropriate
interventions. Physicians, nurses, and social workers often treat street-
based drug users, especially in emergency rooms and free clinics. These
health professionals regularly report that their interactions with street-
based drug users are frustrating and confrontational. The researchers
hoped that their study would help these professionals to have a better
understanding of the cultural backgrounds and motivations of their
drug-using patients.
What Did the Researchers Do and Find? Over the course of six years,
the researchers directly observed about 70 men living on the streets who
injected heroin as they went about their usual lives (this type of research
is called ‘‘participant observation’’). The researchers specifically looked to
see whether there were differences between the white and African
American men. All the men gave their consent to be studied in this way
and to be photographed. The researchers also studied a database of
interviews with almost 7,000 injection drug users conducted over five
years, drawing out the data on differences between white and African
men. The researchers found that the white men were more likely to
supplement their heroin use with inexpensive fortified wine, while
African American men were more likely to supplement heroin with crack.
Most of the white men were expelled from their families when they
began engaging in drug-related crime, and these men tended to
consider themselves as destitute outcasts. African American men had
earlier and more negative contact with law enforcement but maintained
long-term ties with their extended families, and these men tended to
iMedPub :: Thematic collections :: Volume 1
PLoS Medicine | www.plosmedicine.org
Social Medicine in the 21st Century
Ethnicity and Heroin Injection
Reliability of drug users’ self-reported HIV risk behaviors and validity of
self-reported recent drug use. Assessment 1: 383–392.
86. Watters JK, Needle R, Brown BS, Weatherby N, Booth R, et al. (1992) The
self-reporting of cocaine use [letter; comment]. JAMA 268: 2374–2376.
87. Weatherby NL, Needle R, Cesari H, Booth RE, Williams M, et al. (1994)
Validity of self-reported drug use among injection drug users and crack
cocaine users recruited through street outreach: Reply. Evaluation &
Program Planning Special Issue: Evaluating drug abuse interventions 17:
431–432.
consider themselves as professional outlaws. The white men persevered
less in attempting to find a vein in which to inject heroin, and so were
more likely to inject the drug directly under the skin—this meant that
they were more likely to suffer from skin abscesses. The white men
generated most of their income from panhandling (begging for money),
while the African American men generated most of their income through
petty crime and/or through offering services such as washing car
windows at gas stations.
What Do These Findings Mean? Among street-based heroin users,
there are important differences between white men and African
American men in the type of drugs used, the method of drug use,
their social backgrounds, the way in which they identify themselves, and
the health risks that they take. By understanding these differences,
health professionals should be better placed to provide tailored and
appropriate care when these men present to clinics and emergency
rooms. As the researchers say, ‘‘understanding of different ethnic
populations of drug injectors may reduce difficult clinical interactions
and resultant physician frustration while improving patient access and
adherence to care.’’ One limitation of this study is that the researchers
studied one specific community in one particular area of the US—so we
should not assume that their findings would apply to street-based heroin
users elsewhere.
Additional Information. Please access these Web sites via the online
version of this summary at http://dx.doi.org/10.1371/journal.pmed.
0030452.
� The US Centers for Disease Control (CDC) has a web page on HIV
prevention among injection drug users
� The World Health Organization has collected documents on reducing
the risk of HIV in injection drug users and on harm reduction
approaches
� The International Harm Reduction Association has information
relevant to a global audience on reducing drug-related harm among
individuals and communities
� US-focused information on harm reduction is available via the
websites of the Harm Reduction Coalition and the Chicago Recovery
Alliance
� Canada-focused information can be found at the Street Works Web
site
� The Harm Reduction Journal publishes open-access articles
� The CDC has a web page on eliminating racial and ethnic health
disparities
� The Drug Policy Alliance has a web page on drug policy in the United
States
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 PLoS Medicine’s October 2006 issue contained a
special collection of eleven magazine articles
and five research papers devoted entirely to
social medicine.

The collection featured many of the leaders

in the field, including Paul Farmer, Arthur
Kleinman, David Satcher, Nancy Scheper-Hughes,
Dorothy Porter, and Leon Eisenberg.

The Kaiser Family Foundation has conducted

interviews with two of the authors of papers in
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