Sie sind auf Seite 1von 8

European Journal of Epidemiology (2007) 22:215–221 DOI 10.1007/s10654-007-9108-3

Springer 2007

METHODS

Can ethical reasoning contribute to better epidemiology? A case study in research on racial health disparities

Inmaculada de Melo-Martı´n 1 & Kristen K. Intemann 2

1 Division of Medical Ethics, Weill Medical College of Cornell University, 411 E. 69th Street, New York, NY, 10021, USA; 2 Department of History and Philosophy, Montana State University, Box 172320, Bozeman, MT, 59717-2320, USA

Accepted in revised form 2 January 2007

Abstract. A common belief among epidemiologists and other scientists is that they ought not engage in ethical evaluation or endorse any particular ethical, political, or social values while involved in scientific reasoning. Such values are irrelevant to collecting and interpreting data and can only lead to bias. This view is also reflected in scientists education. The authors argue that ethical values are crucial to conducting much epidemiological research. Focusing on epide- miological research on racial health disparities, they show that value judgments are inescapable when

performing such research. Values are implicit in the framing of research questions, the identification of the problem, and the choices of design and method- ology. By making value judgments explicit, scientists will be more likely to pay attention to them and thus assess them in critical ways. Finally, the implications that this has for scientific training are discussed. Scientific training should prepare scientists to engage in ethical reasoning not only because it will make them more responsible human beings, but also because it will make them better scientists.

Key words: Epidemiology, Ethical analysis, Ethics training, Value judgments

Introduction

It is generally held that epidemiologists and other scientists ought not engage in ethical analysis or en- dorse any particular ethical, political, or social values while involved in scientific reasoning [1–3]. According to this view, such values are irrelevant to collecting and interpreting data and can only lead to bias. Of course, it is widely agreed that ethical considerations can be important to science in certain ways. For example, scientists, like any professionals, are con- strained by ethical obligations such as abiding by human subject testing regulations, refraining from fabricating data, or taking credit for the work of others. In addition, value judgments may be impor- tant to scientists in their role as public policy advo- cates as they help inform policymakers or contribute to decisions about how scientific knowledge might best be applied [4]. These ways in which values have been thought to be relevant to science, however, are fairly peripheral. They occur before and after the work that scientists do as scientists is complete. They are not thought to be relevant to the main work that scientists do: developing and conducting experiments, or collecting and analyzing data. This view is reflected in scientists education. Sci- entific training typically does not include identifying and evaluating any ethical, political, or social issues related to particular research areas. Yet, the impor-

tance of much epidemiological work is often justified in relation to ethical and social goals: eliminating diseases, improving patient care, and using resources more effectively and efficiently. The assumption, however, is that these goals have no implications for how epidemiological research is conducted or how scientists reason. In this paper, we argue that ethical values are crucial to conducting much epidemiological research. Focusing on epidemiological research on racial health disparities, we will show that epidemiologists must endorse particular public policy aims of the research, i.e. to reduce the prevalence or incidence of particular diseases, to eliminate disparities, or to improve health care delivery. Thus, they must make value judgments. They must also make value judgments in determining how best these aims can be pursued. Values, then, affect problem identification, as well as research methodology. This case study will show that ethical reasoning can promote epidemiological research that is more scientifically sound and more effective in addressing public policy aims. By making value judgments explicit, we are more likely to pay atten- tion to them and thus evaluate them in critical ways. Finally, we discuss briefly the implications that this has for scientific training. Scientific training should prepare scientists to engage in ethical reasoning be- cause it will not only make them more responsible human beings, but also better scientists.

216

We do not intend to claim that ethical or social values never lead to bias. Clearly, sometimes partic- ular values have led scientists to interpret or ignore data in ways that supported favored hypothesis. Of course, it does not follow that because sometimes value commitments lead to bad science we should eliminate all such commitments. It does follow, however, that some values might be inappropriate when conducting scientific research. If so, careful evaluation and attention to value judgments is even more important.

Values and epidemiological research on health disparities

Despite improvements in the overall health of U.S. citizens, racial/ethnic minorities still receive a lower quality of health services and have higher rates of morbidity and mortality than whites [5]. For exam- ple, the infant mortality rate in 2002 for African- Americans, was more that twice as high as for whites [5]. In 2001, the age-adjusted death rate for cancer was 25.4 percent higher for African–Americans than for white Americans [6]. Similarly, compared with white adults, American Indians and Alaska Natives, African–Americans, and Hispanics are more likely to have diagnosed diabetes [7]. There is broad agreement about the importance of undertaking research on health disparities so as to reduce or eliminate them. However, there are at least two main areas of disagreement as to how this aim should be pursued. The first concerns the extent to which resources to address this problem should be devoted to research in population genetics. The sec- ond concerns how race should be measured for pur- poses of epidemiological studies. Making decisions about these issues requires that scientists engage not only on discussions of technical matters, but also in ethical reasoning about the aims of the research, and about which methods and research programs will best promote those aims. That is, whatever decision is reached, it rests on particular, often implicit, value commitments. Our goal is to bring those values to the forefront, so that they can be recognized and care- fully evaluated.

Value judgments and decisions about research programs

Until recently, the main hypothesis for the origins of racial/ethnic health disparities emphasized social factors such as socioeconomic disadvantages that lead to unequal access to education, employment, housing, and health services. Certainly, the idea that genetics also played a role in such disparities is not new. With the advent of the genetic revolution,

however, interest in using genetic science as a means to both explain and eliminate racial/ethnic health inequities has increased. Indeed, the purpose of sev- eral NIH funded initiatives is to identify genetic contributions to such disparities [8]. Although most researchers agree that social factors contribute to health inequalities, some also argue that it would be wrong to ignore the role of genetics [9, 10]. Many believe that understanding genetic varia- tion across populations defined by race or genetic ancestry will assist in the identification, tracking, and investigation of genetic factors that underlie racial/ ethnic differences in the prevalence and severity of diseases. It will also help us to determine differences in responses to drugs and other treatments. More- over, identification of genetic factors that contribute to health disparities will help develop preventive and therapeutic measures that address racial/ethnic health inequalities [11, 12]. Other researchers argue that evidence that genes have a significant influence on complex diseases is scarce and that the distribution of polygenic pheno- types does not suggest that race is a useful category [13]. Others maintain that claims about medicines having differences in safety or efficacy among racial/ ethnic groups are unsupported, [14] or that race cannot offer the sensitivity and specificity necessary to determine DNA sequence variation that can guide preventive or curative measures [11]. Both sides of this debate assume, however, that if genetic determinants were found, then genetic re- search could assist us in reducing health disparities. The debate, thus, is presented as a technical dis- agreement about whether genetic differences under- lying health disparities exist and whether we have the technical capabilities to find them. Nevertheless, resolving this debate requires researchers to engage in ethical reasoning. If the aim of epidemiological research on racial/ethnic health disparities is to minimize or eliminate such dispari- ties, scientists must make value judgments about whether genetic research would be a good way to achieve such end. To support or reject the use of genetic research in the attempt to solve racial/ethnic health inequalities is not just to make technical judgments about whether such disparities can be traced to genetic differences among racial/ethnic groups. It is also to make explicit or implicit value judgments about what the adequate means are to achieve particular ethical and social goals of the re- search. Defending genetic research as an adequate means to reduce racial/ethnic health disparities presupposes that knowledge of genetic variation among racial/ ethnic groups could be translated into practices that are likely to result in the eradication or diminution of health inequalities [9–11, 15]. But such presup- position, and thus the conclusion that genetic

research will be helpful in such a task, requires scientists to evaluate political and social factors that bear on the efficacy of genetic knowledge. Consider, for example, hypertension, a condition that is twice as likely to affect African Americans as whites [16, 17]. Some have argued that genetic factors increase the propensity of black people of sub-Saharan African descent to develop high blood pressure [18]. Others have indicated that such a genetic compo- nent can be found in the physiology of salt sensi- tivity [19, 20]. In what way would such knowledge contribute to reducing racial/ethnic health disparities in hyper- tension? One answer is that knowledge of genetic variants will allow us to advance public health approaches. Measures such as promoting weight loss, reduction of dietary sodium, adequate intake of fresh fruits and vegetables, and increased physical activity all can contribute to the prevention of hypertension [21]. Or it might be that knowledge of genetic variants could be particularly valuable in counseling at-risk groups more effectively. Doctors could inform African–Americans that they are at increased risk for hypertension by virtue of genetic factors in addition to social factors. Also, once we have knowledge of particular polymorphisms that contribute to the risk of hypertension, for example, this could be used to develop new drugs tailored to them. But the extent to which genetic research can help reduce health inequalities depends in part on the social context in which these strategies are employed. For example, if the recommendations likely to result from genetic knowledge are already part of standard medical practice, then they might do little to contribute to the goal of reducing or eliminating health disparities. Similarly, whether the development of new drugs resulting from genetic research can help address racial health disparities depends, at least in significant part, on whether minority groups are likely to be able to afford expensive drugs. If targeted populations cannot afford genetically tailored medicine, then such drugs will again do little to remedy health inequalities. Deciding whether this would be the case requires making value judgments about our social and political context. Similarly, value judgments are also relevant to determining the particular health inequalities that must be the subject of research. Such inequalities might be the result of a variety of factors such as genetic differences, differential access to health care, or racial oppression. Defending genetic research as key to diminishing health inequalities presupposes that all such inequalities are equally deserving of our attention or that those resulting from genetic differ- ences are more important than other inequalities. However, it might be that there is something partic- ularly problematic about health inequalities that stem

217

from unjust racial discrimination as opposed to those that might be the result of genetic factors [22]. 1 If this is so, even if genetic research can be successful in addressing health disparities, researchers will need to judge whether such research is the best way to ad- dress the kinds of disparities that are most important to address. If our arguments are correct, whether epidemiolo- gists decide to consider or disregard the social con- ditions likely to obtain when conducting epidemiological research is to make value judgments, i.e., that researchers ought or ought not pay attention to such context, that using resources for investiga- tions that would lend support to recommendations already encouraged is good or bad, or that to conduct research that will lead to medications unlikely to be accessible to relevant populations is problematic or acceptable. 2 Certainly, in many situations the social or political factors that affect the success of a research goal might be uncertain. But this only means that such uncer- tainty needs to be taken into account when making value judgments. And of course, judgments that might be perfectly appropriate in a situation of uncertainty might be incorrect in one where we have the relevant knowledge. In any case, value judgments cannot be avoided when conducting research on radical/ethnic disparities. Still, genetic epidemiologists might argue that ge- netic research should be prioritized not because of its present value to achieve our goal, but because it has the potential to generate cures that will be effective in diminishing health disparities in the long term. Thus attention to the current social context is irrelevant. Of course, determining whether genetic research will be able to eliminate health disparities in the future re- quires empirical research. Yet, justifying such empirical research would still require making value judgments. For instance, epidemiologists must judge that efforts directed to greater future outcomes are better that those aimed at present amelioration.

1 We recognize that focusing on health disparities that are the result of unjust racial discrimination may be more of a concern for epidemiological research conducted in the U.S.A., or other coun- tries where there is a long and significant history of racial oppression. This may become a more prevalent concern for European epidemiology due to immigration. Regardless, our point is that whether epidemiological researchers on health disparities focus on race, economic factors, or genetics depends on making value judgments about how the research should be best focused to promote the ethical and social aims of the research.

2 Notice that we are not conflating ethical value judgments with judgments about social, political, or economic features of the world in which epidemiological research is conducted. In other words, we are not trying to reduce all social sciences to ethics. We recognize that there are a host of different judgments that may be relevant to conducting epidemiological research. Our claim is that scientists must make ethical value judgments in deciding whether to regard or disregard particular features of the social context so as to determine how best to engage in epidemiological research that aims to eliminate social health disparities.

218

In response to our arguments that epidemiologists must make value judgments in order to justify research programs, some might object that our analysis conflates the scientific or epistemic aims of epidemiological research with the public policy aims of the research or with particular interventions. One might argue that the scientific aim of epidemiological research is simply to determine whether there are genetic variants that are responsible for racial/ethnic health disparities. The aim is to produce scientific knowledge. This can be distinguished from the public policy aims of such research, such as the aim to reduce or eliminate health disparities, and from spe- cific interventions, such as recommending behavioral changes or developing new drugs. Presumably, deci- sions about how best to pursue social and political aims and interventions are best left to policymakers, while scientists should focus on determining the existence and causes of health disparities. This objection, however, is problematic because it begs the very question at stake. It presupposes that values are irrelevant to the epistemic goals of the research. This is certainly a common view, but nonetheless one that we are rejecting in this paper. The aim of research on health disparities is not just to accurately describe health differences or determine their cause, but to do so in a way that will be useful to making predictions, preventing greater disparities, and improving human health. As we have tried to show, the scientific aims of research on health dis- parities i.e. why African–Americans have higher incidences of asthma than Caucasians, are insepara- ble from its social goal, i.e. to eliminate such dis- parities. At the same time this social goal also guides decisions about what interventions would best accomplish the goal. Such interventions however, i.e. development of new drugs, better access to health care, social policies that eliminate racial discrimina- tion, must be grounded on particular research pro- jects. For example, it would be odd to argue that a policy attempting to promote affirmative action as a way to reduce racial discrimination is grounded on the results of genetic research directed to determine whether African–American at a higher risk for lung cancer than Caucasians. But if this is the case, then we must use value judgments to decide what type of research to pursue, i.e., whether we will investigate genetic factors, economic aspects, or unjust racial practices. And, as we have argued, each of these possibilities is grounded on particular value judgments. Furthermore, even if one agreed that genetic epi- demiologists task is simply to produce knowledge, this also involves value judgments. For instance, sci- entists must judge that knowledge is intrinsically good or that we ought to use resources to produce knowledge whether or not it is useful. Although we have focused on value judgments that genetic epidemiologists must make in pursuing their

research in health disparities, we do not mean that only those defending this type of investigation make value judgments. Decisions to pursue or prioritize research on social determinants would also involve making similar kinds of value judgments (i.e., judg- ments about what the social aims of the research are and whether the examination of certain social factors would best promote those aims). Often such values go unacknowledged. This is so, in part, because of the common belief that value judgments have no place in good science. But the fact that scientists lack training to recognize and scrutinize them is also likely to contribute to this problem.

Value judgments and measuring ‘‘race’’ in epidemiological studies

In addition to making value judgments about which research programs will be likely to promote the aims of research on racial/ethnic health disparities, inves- tigators must also make ethical value judgments related to data collection decisions. In particular, they must decide how race should be measured in such studies [23]. Disagreements about race as a category in epide- miological studies have focused on whether we are measuring a characteristic with biological meaning or a social construction [24, 25], whether race is a useful category in biomedical research, and on questions about how race should be categorized [26, 27]. In all these instances, however, problems are usually seen as technical not as ethical issues. But decisions about how to best measure race depend on what we want our racial categories to do. Hence, such decisions require more than simply technical discussion; they require researchers to make value judgments. Health agencies have measured race in different ways. Prior to 1980, the National Center of Health Statistics (NCHS) classified a person as white if and only if both parents were white [28]. After 1980, the NCHS began assigning race on the basis of the bio- logical mother s race alone. The National Census Bureau has allowed individuals to self-designate their race since the 1960 census. Beginning in 2000, census respondents were given the option of self-designate one or more race categories to indicate their racial identities [29]. During the last decade, dissatisfaction with self-identification has resulted in increased interest in employing ancestry-informative markers and other gene-only approaches. The question is, which method or standard for determining race is the best one? How should epidemiologists assign indi- viduals to particular racial categories? Would it be better to eliminate the concept of race? Answers to these questions depend, again, on the aims of the research. They rest on what we want the category of race to measure in epidemiological stud- ies [30]. As discussed above, a possible aim of health disparity research might be to detect and reduce those

that are the result of unjust discrimination. That is, epidemiological researchers can develop tools that will assist us in identifying particular factors, in this case unjust discrimination, that contribute to racial health inequalities. The identification of such factors can then be used to develop interventions that could prevent disease, promote health, and provide appro- priate medical care. These interventions presumably will contribute to our goal of reduction of racial/ ethnic health disparities. This aim can only be achieved, however, if we have a definition of race that successfully identifies who is likely to be subjected to racial discrimination and who is not. Which standard for measuring race best tracks how racial categories operate in racial discrimination? This is, of course, an empirical question. But, conducting such work will require scientists to make value judgments about which behaviors, states of affairs, and material con- ditions constitute unjust racial discrimination. Similarly, if the aim of epidemiological research on health disparities is to eliminate those caused by un- just racial discrimination, we need a way of measur- ing race that allows us to monitor and track improvements or reductions in such inequalities. This might be an argument in support of using older ways

of measuring race. Maintaining earlier classifications

will allow for data comparison.

If we are correct about the need to take into account the aims of our research in order to determine how best

to measure race, then it follows that the concept of race

in epidemiological studies requires making value

judgments. Indeed, the goal of identifying health dif- ferences caused by unjust racial discrimination, for example, so that we can eliminate them and also measure progress in reducing unjust racial discrimi- nation presupposes ethical and political commitments.

It is these commitments that help us determine what

we want the concept of race to do for us. Epidemiologists might object that value judgments can still be avoided if we stop using value-laden concepts like race altogether [31, 32]. Instead of worrying about how to use the concept of race, epi- demiologists should focus on other, presumably less value-laden factors such as genetic markers, drug metabolism, disease incidence, socioeconomic status, education, or exposure to environmental hazards [33]. Researchers could then have an accurate understanding of disease risks and morbidity and

mortality rates on the basis of factors that do not rely on the concept of race or on any value judgments about racial discrimination. This objection presents several problems. First, it is not clear that the concept of race can be eliminated as

a significant category in epidemiological research.

Even when controlling for other factors such as ac- cess, socioeconomic status, and education, there are still racial differences in health outcomes [34, 35]. Second, the decision to eliminate race as category in studying health disparities is itself grounded on

219

value judgments. Indeed the pursuit of genetic re- search on health inequalities, for instance, that explicitly endorses a methodology in which self-as- cribed racial identity is replaced by genetic markers, makes the value judgment that the aim of epidemio- logical studies is not to eliminate health disparities caused by unjust racial discrimination. Similarly, a methodological choice to pay attention exclusively to factors such as socioeconomic status, personal pref- erences, or exposure to environmental hazards pre- supposes that it is not important to understand how unjust racial discrimination contributes to health inequalities beyond such factors. Whether these assumptions are correct is not the topic of this paper. Our point is that whether race is a useful category in health disparities research depends on value judg- ments related to the social aims of the research.

Implications for science education

Currently, epidemiological education does not in- clude training in ethical reasoning. In fact, scientists are discouraged from thinking about the ethical or social values related to their research, fearing that it will lead to bias. But if our arguments here are cor- rect, epidemiologists often must consider and endorse certain social or political aims of the research and determine how their research can best help promote those aims. Again, we are not claiming that ethical and social values never lead to bias. Sometimes, relying on particular values is inappropriate or distorts inter- pretation of data, leads scientists to disregard plau- sible alternative explanations, or causes scientists to endorse a theory that is not warranted by the evi- dence. Giving an account of when values do or do not lead bias in scientific research is beyond the scope of this paper. We argue, however, that ethical values are an intrinsic part of conducting epidemiological re- search. They simply cannot be avoided. But if this is so, we cannot assume that scientists should never engage in ethical reasoning. If this is right, then training in epidemiology should include some training related to the ethical and social dimensions of research. Scientists need to be able to identify and evaluate the ethical values at stake in their studies. Moreover, scientists must justify their methodological decisions in relation to the relevant ethical values when appropriate. We do not presume that values are always clear or unproblematic, that they do not conflict with each other, or that there is not disagreement about what values are better or worse. In fact, is it precisely be- cause we believe that values might be better or worse, or that they might conflict with other values that we desire to endorse that we advocate the importance of ethical reasoning in scientific training. Notice also that we are not arguing that training in ethical reasoning is good for epidemiologists because

220

this would make them more conscientious human beings. Our point is that it will also make them better scientists. If at least some epidemiological research requires making ethical value judgments, then inves- tigators trained in ethics would be better able to as- sess such judgments. Moreover, they would be aware of what is already an important part of their research. Scientists would be able to evaluate how particular values influence specific research goals and method- ologies and attend to whether and how such values influence the realization of desired goals. More importantly, they would be able to do this con- sciously and critically. To disregard the importance of ethical training would be problematic for several reasons. First, sci- entists work would be affected. They, for instance, might be unlikely to recognize when value judgments lead to biases and when such inclusion is a necessary element of their research. Second, scientist s respon- sibilities toward society might be unfulfilled. For example, given that science is funded primarily through public money, scientist ought to make judgments about how best to use scarce resources. Ethical training will assist them in evaluating such judgments. Third, inattention to ethical education in science reinforces the incorrect idea that scientists need not be concerned with such issues [36]. Our case study shows that value judgments can be an intrinsic part of scientific research. Hence, scientists should not present their results as if they were value-neutral when, in fact, they are not. This would prevent a thorough evaluation of scientific research. Good sci- ence requires careful attention to the evidence, ade- quate research protocols, and suitable questions. But as necessary as all these factors are, they are not always sufficient. For some type of research at least, ethical reasoning is also essential.

Acknowledgements

We would like to thank Malia Fullerton for helpful comments on earlier versions of this manuscript.

References

1. Haack S. Science as social?–yes and no. In: Haack S Manifesto of a Passionate Moderate. Chicago: Chicago University Press, 1998, p. 104–122.

2. McMullin E. Values in Science. In: Asquith P and Nickels T (eds.) PSA 1982: The proceedings of the 1982 Biennial meeting of the philosophy of science associa- tion. East Lansing, MI: Philosophy of Science Associ- ation, 1983, p. 3–28.

3. Mitchell S. The prescribed and proscribed values in science policy. In: Machamer P and Wolters G (eds.) Science, values, and objectivity. Pittsburgh, PA: Uni- versity of Pittsburgh Press, 2004, p. 245–255.

4.

Savitz DA, Poole C, Miller WC. Reassessing the role of epidemiology in public health. Am J Public Health. 1999; 89: 1158–1161.

5.

Centers for Disease Control and Prevention (CDC).

NCHS Data on Racial and Ethnic Disparities. (Feb 7, 2005). http://www.cdc.gov/nchs/data/factsheets/racia- landethnic.pdf.

6.

Centers for Disease Control and Prevention. Fact Sheet. Racial/Ethnic Health Disparities (April 2, 2004). http://

www.cdc.gov/od/oc/media/pressrel/fs040402.htm.

7.

Centers for Disease Control and Prevention. Racial and Ethnic Approaches to Community Health (REACH) 2010. Atlanta, GA: CDC, (2005).

8.

Sankar P, Cho MK, Condit CM, et al. Genetic Research and Health Disparities. JAMA 2004; 291:

2985–2985.

9.

Collins FS. What we do and don t know about ‘race , ‘ethnicity , genetics and health at the dawn of the gen- ome era. Nat Genet 2004; 36(11 Suppl): S13–S15.

10.

Burchard EG, Ziv E, Coyle N, et al. The importance of race and ethnic background in biomedical research and clinical practice. N Engl J Med. 2003; 348: 1170–1175.

11.

Fine MJ, Ibrahim SA, Thomas SB. The role of race and genetics in health disparities research. Am J Public Health. 2005; 95: 2125–2128.

12.

Carson P, Ziesche S, Johnson G, et al. Racial differ- ences in response to therapy for heart failure: analysis of the vasodilator-heart failure trials. Vasodilator- Heart Failure Trial Study Group. J Card Fail. 1999; 5:

178–187.

13.

Cooper RS, Kaufman JS, Ward R. Race and genomics.

N

Engl J Med. 2003; 348: 1166–1170.

14.

Tate SK, Goldstein DB. Will tomorrow s medicines work for everyone? Nat Genet 2004; 36(11 Suppl): S34–

S42.

15.

National Institutes of Health (NIH). News Release. HHS Awards More Than $56 Million to eliminate health disparities. Press Release Archives, January 9, (2006). Available at http://www.nih.gov/news/pr/

jan2006/ncmhd-09.htm.

16.

Cooper RS, Zhu X. Racial differences and the genetics

of

hypertension. Curr Hypertens Rep. 2001; 3: 19–24.

17.

Hertz RP, Unger AN, Cornell JA, et al. Racial dis- parities in hypertension prevalence, awareness, and management. Arch Intern Med. 2005; 165: 2098–2104.

18.

Brewster LM, Clark JF, Montfrans GA. Is greater tissue activity of creatine kinase the genetic factor increasing hypertension risk in black people of sub-Saharan Afri- can descent?. J Hypertens 2000; 18: 1537–1544.

19.

Grim CE, Robinson M. Blood pressure variation in blacks: genetic factors. Semin Nephrol. 1996; 16: 83–93.

20.

Swift PA, Macgregor GA. Genetic variation in the epithelial sodium channel: a risk factor for hyperten- sion in people of African origin. Adv Ren Replace Ther. 2004; 11: 76–86.

21.

Krousel-Wood MA, Muntner P, He J, et al. Primary prevention of essential hypertension. Med Clin North Am. 2004; 88: 223–238.

22.

Satcher D. The initiative to eliminate racial and ethnic

health disparities is moving forward. Public Health Rep. 1999; 114: 283–287.

23.

Comstock RD, Castillo EM, Lindsay SP. Four-year review of the use of race and ethnicity in epidemiologic

and public health research. Am J Epidemiol 2004; 159:

611–619.

24. Rosenberg NA, Mahajan S, Ramachandran S, et al. Clines, clusters, and the effect of study design on the inference of human population structure. PLoS Genet. 2005; 1: e70.

25. Smedley A, Smedley BD. Race as biology is fiction, racism as a social problem is real: Anthropological and historical perspectives on the social construction of race. Am Psychol. 2005; 60: 16–26.

26. Winker MA. Measuring race and ethnicity: Why and how? JAMA 2004; 292: 1612–1614.

27. Rebbeck TR, Halbert CH, Sankar P. Genetics, epide- miology, and cancer disparities: is it black and white? J Clin Oncol. J Clin Oncol 2006; 10(24): 2164–2169.

28. Centers for Disease Control and Prevention. NCHS Definitions. Race. (Dec. 16, 2004). http://www.cdc.gov/ nchs/datawh/nchsdefs/race.htm.

29. Grieco E, Cassidy R. Overview of Race and Hispanic Origin: 2000. U.S. Census Bureau, Census 2000 Brief, C2KBR/01–1, March 2001. Also available at http://

www.census.gov/prod/2001pubs/c2kbr01–1.pdf.

30. Haslanyer S. Gender and race: (what) are they? (what) do we want them to be? Nouˆs 2000; 34: 31–55.

221

31. Schwartz RS. Racial profiling in medical research. N Engl J Med. 2001; 344: 1392–1393.

32. Jorde LB, Wooding SP. Genetic variation, classifica- tion and ‘race . Nat Genet. 2004; 36(11 Suppl): S28–

S33.

33. Fullilove MT. Comment: abandoning ‘‘race’’ as a variable in public health research–an idea whose time has come. Am J Public Health. 1998; 88: 1297–1298.

34. Shavers VL, Shavers BS. Racism and health inequity among Americans. J Natl Med Assoc. 2006; 98: 386–

396.

35. Williams DR. Race, socioeconomic status, and health. The added effects of racism and discrimination. Ann N

Y Acad Sci. 1999; 896: 173–188.

36. Wolpe PR. Reasons scientists avoid thinking about ethics. Cell. 2006; 125: 1023–1025.

Address for correspondence: Inmaculada de Melo-Martı´n , Division of Medical Ethics, Weill Medical College of Cornell University, 411 E. 69th Street, New York, NY, 10021, USA Phone: +212-746-1268 E-mail: imd2001@med.cornell.edu

Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.