Assignment No 2

Course: Health
Enrollment No: S133CGS11
Course instructor: Dr. Shubhra Nagalia
Topic: What is it to be Human?- The Human Genome Project and the Ebola Crises

Introduction:
The Human Genome Project was completed in the year 2003 and at completion it promised the rosy
future of human health and self-knowledge. Recently, in the year 2013, we witnessed the Ebola
Crises that again forces us to raise some crucial questions that can become a site for us to criticize
the Human Genome Project and following this critique it enables us to highlight the crises in the
bio-medical framework within which the Human Genome Project is largely embedded. The
assignment argues that even though the rhetoric of Social Determinants of Health Framework has
been adopted by various international organizations working in the field of health care, the biomedical framework and its politics of manufacturing perfect Humans, its biological discourse are
still rampantly being universalized and the Human Genome Project is the epitome of this
phenomenon that needs serious scrutiny and cannot be hailed as the ultimate solution to all out
health problems. The attempt is not to reject this Project as useless but to argue that it needs to be
supplemented with the social determinants of Health framework instead of
universalizing/standardizing it as some ultimate goal to strive for.
To highlight the racial discourse inherent in the crises of Ebola, I will take up the articles published
in The Guardian from its emergence till now when the danger has somehow and supposedly
subsided arguing that the danger has not actually subsided but has been only pacified and there is
a possibility that it might rise again if certain crucial questions that this crises raises are not resolved
and scrutinized.
The assignment has three parts. The first part explains the politics of The Human Genome Project

largely based on the work of Richard Lewontin. The second part traces the discourse of the Ebola
crises for its inherent racial, and economic politics in the global media and the third part attempts to
connect the dots to raise the crucial questions, not to resolve them but to enable a reflection on
them.
Finally, the assignment is not an attempt to answer the philosophic question what is it to be Human.
It is an attempt to show that the way Human Genome Project attempts to answer this question can
be complicated by the crises such as Ebola that visibilize this question and make this question not
worth asking. For what is more important is not to ask what is it to be Human but to ask who is a
Human within these global power structures.
I
For someone not well versed in the discipline of biology and to whom these biological facts
appear to be some unknown/abstract entities, it is best to use the description of The Human Genome
Project from somewhere else. An online portal of US national national library of medicine explains
the Human Genome Project thus: The Human Genome Project was an international research effort
to determine the sequence of the human genome and identify the genes that it contains. The Project
was coordinated by the National Institutes of Health and the U.S. Department of Energy...The work
of the Human Genome Project has allowed researchers to begin to understand the blueprint for
building a person. As researchers learn more about the functions of genes and proteins, this
knowledge will have a major impact in the fields of medicine, biotechnology, and the life sciences.1
The introductory paragraph under the section All about Human Genome Project at the National
Human Genome Research Institute defines Human Genome Project as one of the great feats of
exploration in history - an inward voyage of discovery rather than an outward exploration of the
planet or the cosmos;. After this literary and metaphoric rendition of the Project it goes on to give
in one line what the project scientifically is: an international research effort to sequence and map

http://ghr.nlm.nih.gov/handbook/hgp/description

all of the genes - together known as the genome - of members of our species, Homo sapiens.
Completed in April 2003, the HGP gave us the ability, for the first time, to read nature's complete
genetic blueprint for building a human being. 2. When understood through this paragraph this
project then becomes the ultimate achievement of human knowledge. It allows the absolute
domination of science over nature. Humans have now the knowledge to create humans; to know
how a Human is formed; and ultimately to know what a Human is!
My understanding and the critique of the Human Genome Project is based mostly on Richard
Lewontin's article 'The Dream of the Human Genome' in his book It ain't necessarily so: The dream
of the Human Genome and other illusions (2001). As the name suggests, the book is an attempt to
debunk the myths around the human genome project and to show that it is not what it is assumed to
be- a solution to all messiness. The article in this book "The Dream of the Human Genome " was
first published in The New York Review of Books of May 28, 1992, as a review o f The Code of
Codes: Scientific and Social Issues in the Human Genome Project, edited by
Daniel J. Kevles and Leroy Hood (Harvard University) that had articles from different lenses
around the Project. Thus, the article could become a central point to understand the debates around
the Human Genome Project. In talking about the project I will not go into the technical details of
the Project but will only discuss the social, political and cultural issues that I have extracted form
the aforementioned reading. My argument can be divided into three strands. First is the issue of the
way the scientific facts are manipulated through language by the scientists themselves. Second, is
the political economy of this project and third is its social implications of the project viz-a-viz
Eugenics.
The language plays an important part in building the illusion around the Project. As Lewontin
informs, it is referred as The Most Astonishing Adventure of Our Time, " say Jerry E. Bishop and
Michael Waldholz;"The Future of Medicine, " according to Lois Wingerson; "today's most
important scientific undertaking," dictating "The Choices of Modern Science, " Not going into the
2

http://www.genome.gov/10001772

technicalities, the DNA is described, even by some most sophisticated molecular biologists to be an
active, self reproducing molecule when it is anything but that. Richard Lewontin explains in
detail that the DNA is not self-reproducing; second, it makes nothing; and third, organisms are not
determined by it. And if Organisms are not simply determined by their genes, a fact also well
argued by Evelyn Fox Keller in her book The mirage of a space between nature and nurture (2010),
then the project cannot be successful in defining what it means to be Human. The project itself is
structurally flawed if it fails to addresses the fact that both the internal and external co-determine
the organism to such an extent that it is not possible to separate one from the other. Another
example that affirms the structural flaw of the Project is that the Project produces a free newsletter
whose cover serpent coils of DNA are surrounded by the motto "Engineering, Chemistry, Biology,
Physics, Mathematics! Thus, language and visual rhetoric is used to make it what it isn't.

The political economy built around this project is an important factor for understanding it's
sustenance and perhaps explains the use of rhetoric around the project. Lewontin informs that these
projects are initiated by, in fact, administrative and financial organizations rather than research
projects in the usual sense. The project is an effort of five year long lobbying effort by scientists to
capture the large amounts of public funds and directing the flow of those funds into an immense
cooperative research program. The cost of sequencing the human genome is estimated
optimistically at 300 million dollars (ten cents a nucleotide for the three billion nucleotides of the
entire genome ), but if development costs are included it surely cannot be less than a half-billion in
current dollars! When asked to a scientist if funds should not be given instead to the homeless,
answered, "What these people don't realize is that the homeless are impaired . . . .Indeed, no group
will benefit more from the application of human genetics !
Authors like Keller argue that The Human Genome project could become a valuable tool to
understand the intricate biological process. However, what emerges is it's connection to be linked to
the old dream of biological determinism where everything in us/around us has biological roots.

Therefore, some races become biologically more pure than the other. Therefore, the last strand is
the one that connects the Human Geno,me Project with the politics of Eugenics. One of the
scientist, as Lewontin points out also had a vision that that gave genes for alcoholism,
unemployment, domestic and social violence, and drug addiction. What we had previously
imagined to be messy moral, political, and economic issues turn out, after all, to be simply a matter
of an occasional nucleotide substitution? The structural global inequalities that have their
explanation outside the genes are made to be determined by biology thus a poor is poor not because
of some inherent poor genes but because of the structural inequalities in which she is located. The
project also disregards the Human variation from gene to gene, to individual to individual and the
ultimate question that it fails to answer is that whose genome was going to be represented in the
human genome? It also becomes a tool for standardization and builds upon the old project of
Humanism whereby the dominant white male figure could represent the whole of humanity.
II
In 2014, the three countries in west africa Guinea, Liberial and Sierra Leone witnessed the
widespread epidemic of Ebola Virus Disease, the most fatal so far in the history of this disease. The
Death toll is suspected to be at 5408 out of 13592 suspected cases.
The above descriptive and factual information is complicated when we witness the following
chain of reactions: some African immigrants kids from Dallas in Texas were tagged as Ebola
kids simply because of their skin associations. They had nothing to do with the disease.
Universities were rejecting the prospective Ebola-free students from Nigeria. A Newsweek cover
showed a picture of a chimpanzee with the headline: "A Back Door for Ebola: Smuggled Bushmeat
Could Spark a U.S. Epidemic." First, a Bushmeat has nothing to do with Ebola. Second, Ebola did
not spread from Human-animal contacts (again the common racial myth: West being close to
technology and the non-west being close to the animal/natural world). Even if Human-animal
contact myth was true in a very limited sense than chimpanzees had nothing to do with it, it was the

fruit bats. The story of Thomas Eric Duncan, a Liberian national infected with Ebola, sent home
when he first sought treatment at a Dallas hospital? And the question is commonly being asked as to
the the three white Americans treated at Emory University Hospital and Nebraska Medical Center
survived. Why didn't Duncan? 3
These chain of reactions highlight how the Ebola Crises has rejuvenated the images of Africa as a
dark Continent as we see that the whole of the continent is being seen as the site for the origin of
the disease and consequently a racial segregation is on the rise whereby certain skin color is
automatically being associated with the Ebola disease when the science proves that no specific
race is more prone to this disease.
My attempt in this assignment has been to contrast these racial undertones viz-a-viz Ebola Crises
with the genetic discourse of the Human Genome Project that was discussed in the first part of the
assignment. What does it mean to know a human through it's genetic design (however scientifically
flawed even that idea maybe) when what constitutes Human and Non-Human (west and the
non-west, white and black, man and woman) are the political, cultural and geographical locations in
this global structure that constitutes who we are. As an online report on the Ebola crises points out
Biological and ecological factors may drive emergence of the virus from the forest, but clearly the
sociopolitical landscape dictates where it goes from therean isolated case or two or a large and
sustained outbreak.4
Another article suggests that the Ebola would have never spread in UK5. This is not because some
inherent genetic advantage that Britain's population had over the population in the three countriesGuinea, Liberia and Sierra Leone but because Britain enjoys a certain power and structural
advantages in the Global structure that the Pharmaceutical companies would have simply rushed to
produce the medication. Proving that it is not just the genes that define my health and well-being.

3
4
5

http://www.huffingtonpost.com/judy-lubin/unequal-treatment-race-eb_b_5955786.html
http://www.plosntds.org/article/info:doi/10.1371/journal.pntd.0003056
http://www.telegraph.co.uk/news/worldnews/ebola/11010135/If-Ebola-was-in-the-UK-wed-cure-it-says-leadingdoctor.html

This is in contrast to the biomedical model of medicine which is exemplified by the Human
Genome Project that suggests that every disease/illness can be explained through the language of
genes and Virus.
When connected with the above discussion of the Human Genome Project the politics of Ebola
becomes clear. The reality is that the epidemic spread because of the global structural inequalities.
But within the larger global discourse of healthcare in which the we are embedded this reality is
manipulated and made it out to be a matter of race i.e. a matter of biology, through the use of
language and visual material that hide the assumptions and flaws of this discourse.
III Conclusion
Thus, a juxtaposition of the two together brings important patterns. Our inherent ideas and notions
about health care are not pure factual science and is not just a product of biology as it is assumed to
be. Our idea of health care comes to us as embedded in a nexus of language, economy, politics that
hide the limitations of Science and in turn the emphasis on Science hides the fusion of language,
economics and politics in the making of medicine and our idea of health care. Both the
Lewontin's analyses of the Human Genome Project and the media's rendition of the Ebola crises
highlight these intricacies within the discourse of the medicine. The crises in health care then is
not just the methodological flaw but the oblivion of these intricacies that renders medicine and the
Science around it as beyond questioning.
Susie Tharu in her introduction to the book Towards Critical medical practice argues that the
crises in medical care today is the binary between theory and practice that needs to be addressed I.e
the larger biomedical framework needs to address the practical implications of that framework in
specific contexts. However, the two sites contrasted here do not fit into the binary of
Theory/practice i.e juxtaposing the two together is not an attempt to look at how the theory of
human genome project, the bio-medical framework might fail when applied in practice to crises
such as Ebola or any other. Juxtaposing the two is an attempt to bring the two sites together out of

which two different theoretical frameworks are emerging to argue that both need to be applied to
each other. The attempt of this assignment has been to highlight that in the bio-medical framework
through the Human Genome Project and the the contemporary crises of Ebola becomes the site
through which the need of complementing the bio-medical framework with the Social Determinants
of Health approach is sustained. The crises in health care then becomes the stubbornness of the biomedical framework to recognize its own methodological flaws and the reality that this framework is
largely becoming a standard, a universalized framework needs to be acknowledged. As is shown
through The Human Genome Project, it is diminishing the other frameworks that can actually
address it's methodological flaws.
The attempt is not to reject the bio-medical framework for it is a framework like any other and no
one framework is better than the other. However, the biomedical framework becomes the center
point of criticism is because it has, in the recent years, become a universal/standard framework
within which individuals and their social relations are organized and regulated and therefore an
attempt to de-construct the framework for it's inherent politics becomes crucial.

***

References:

1) Lewontin, R. "It ain't necessarily so: the dream of the human genome and other illusions."
(2001).

2) Zachariah, Anand, R. Srivatsan, and Susie J. Tharu, eds. Towards a Critical Medical Practice:
Reflections on the Dilemmas of Medical Culture Today. Orient BlackSwan, 2010.