Race, Health Care and the Law 
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The Reification of Race in Health Research

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Vernellia R. Randall
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 Sandra Soo-Jin Lee, Joanna Mountain, and Barbara A. Koenig

excerpted from: Sandra Soo-Jin Lee, Joanna Mountain and Barbara A. Koenig, The Meanings of "Race" in the New Genomics: Implications for Health Disparities Research, 1 Yale Journal of Health Policy, Law & Ethics 33-68 , 53-59 (Spring 2001)(102 Footnotes Omitted)

Historically, race, genetics, and disease have been inextricably linked, producing a calculus of risk that implicates race with relative health status. Racialized groups have been associated with particular diseases. Sometimes these associations are accurate and sometimes they reflect underlying social prejudice. It is against this backdrop that investigations into health inequalities in the United States play out. Troy Duster, a sociologist who has examined these associations, has identified this process as the "prism of heritability" in which disease is uncritically linked to individuals because of racial assignment and categorically disassociated from other populations. He cautions that race-based etiological theories may become hegemonic, effectively eliminating explanations of illness that take account of environmental or behavior factors associated with social class. Melbourne Tapper has studied this process with respect to the identification and management of sickle cell anemia in colonial Africa. Tapper reveals that the political project of colonialism was further justified by the dominant discourse on race that identified sickle cell anemia as a "black disease" and contributed to a definition of "whiteness" that was predicated on the notion of invulnerability and health. Similarly, in the United States, prejudicial attitudes toward African Americans and immigrants from the Mediterranean region fueled racial rhetoric around sickle cell anemia and thalassemia. In the twentieth century, the association of race with disease was utilized by those who were politically opposed to miscegenation and immigration of people from southern Europe.

Given this history, particular caution must be employed when using the race concept in health-related research. Some have argued that the concept should be abandoned, based on the overwhelming scientific evidence that human races do not exist. Others argue for retaining the term, but limiting its application to the social, as opposed to the biological, realm. Recently, the American Anthropological Association, the official professional organization of physical, biological, social, and cultural anthropologists and archeologists in the United States, released a statement emphasizing the social and historical construction of race. Reflecting a general consensus among social scientists, physical and biological scientists and other scholars, the statement contended that race could not be considered a valid biological classification:

The "racial" worldview was invented to assign some groups to perpetual low status, while others were permitted access to privilege, power, and wealth. The tragedy in the U.S. has been that the policies and practices stemming from this worldview succeeded all too well in constructing unequal populations among Europeans, Native Americans, and peoples of African descent. Given what we know about the capacity of normal humans to achieve and function within any culture, we conclude that present-day inequalities between so-called "racial" groups are not consequences of their biological inheritance but products of historical and contemporary social, economic, educational, and political circumstances.

Despite such proclamations, race continues to be used erroneously, even harmfully, as a scientific variable, particularly in biomedical research designed to explain health behavior. Its use is ubiquitous; from 1910 to 1990, race was used in 64% of articles appearing in the American Journal of Epidemiology. One author suggests that historians will find our current terminology to be inherently racist, rather than scientifically useful. A review of biomedical literature claiming links between race and disease reveals that researchers rarely describe their racial and ethnic measurement or classification methods. In a review of articles published in Health Services Research, Williams noted, "Terms used for race are seldom defined and race is frequently employed in a routine and uncritical manner to represent ill-defined social and cultural factors." Lack of precision--nńively conflating biology and culture--makes it impossible to tease out the causes of health disparities between economically disadvantaged racialized populations and more privileged groups.

The lack of consistency in the use of terminology for concepts of race, ethnicity, ancestry, and culture is manifest in the wide variance in terms used to identify individual and group identities. Terms such as white, Caucasian, Anglo, and European are routinely used interchangeably to refer to certain groups; whereas black, colored, Negro, and African American are used to refer to comparison groups. And white-black comparisons are straightforward in contrast to the confused use of terms like Hispanic and Asian. Fundamental ambiguity in the concept of race obscures the role that genetic variation plays in our current understanding of disease. Socially defined notions of race are treated as legitimate biological variables; race itself is often used as a proxy for disease risk. Epidemiological studies employ race as shorthand for social and environmental factors that are associated with particular racialized groups. When treated in this way, race is understood to have some contributory effect to particular conditions and diseases, but in a very imprecise way. For example, reports that black smokers are ten times more likely to develop helicobactor pylori infection--a cause of duodenal ulcers--than white smokers, treats skin color as an independent variable, and thus circumvents an explicit engagement with the complex interaction of social, environmental, and perhaps, biological factors that may have produced the statistically significant findings.

Research utilizing race serves to "naturalize" the boundaries dividing human populations, making it appear that the differences found reflect laws of nature. In fact, the use of race and ethnicity in biomedical research is problematic because it is caught in a tautology, both informed by, and reproducing, "racialized truths." We assume that racial differences exist, and then proceed to find them. While the scientific validity of racial distinctions between human populations has long since been disputed, the cultural logic of stratifying populations by race/ethnicity exerts a powerful pull--it is a highly ritualized scientific practice enshrined in law and government regulation.

A. Race, Smoking, and Nicotine Metabolism

Recent research on smoking and nicotine metabolism illustrates the implications of the reification of the race concept in health research. The use of tobacco is singled out as a leading health indicator in the Healthy People 2010 vision statement. According to the report, adolescent rates of cigarette smoking have increased in the 1990s among white, African-American, and Hispanic high school students after years of declining rates during the 1970s and 1980s. A central goal of the Healthy People 2010 mission is to decrease the rate of tobacco use through prevention programs and to focus research on treatment programs for existing smokers.

Epidemiological and behavioral research on cigarette smoking has clearly identified sociodemographic variation in smoking rates. "Race" is highlighted as a significant predictor of smoking behavior, yet its exact salience is difficult to tease out. Studies indicate that although a larger proportion of blacks than whites smoke, several differences in tobacco use exist between these groups. Blacks consume fewer cigarettes and begin smoking later in life than whites. Blacks smoke cigarettes higher in tar and nicotine and are specifically targeted by the tobacco industry as potential consumers. Smoking among African Americans has been associated with a higher incidence of lung cancer, cardiovascular disease, low birth weight, and infant mortality.

Research on a genetic basis for differences between African Americans and non-Hispanic European Caucasians has focused on differences in the metabolism of tobacco. The logic of such studies is founded on the notion that racial groups may have distinct genetic characteristics that result in different biochemical processes such as variations in nicotine metabolism. Recently it has been reported that racial and ethnic differences may exist in the serum cotinine levels of cigarette smokers. Levels of cotinine, a metabolite of nicotine, indicate relative exposure to tobacco smoke. In this study, sponsored by the National Center for Chronic Disease Prevention and Health Promotion, non-Hispanic black smokers had significantly higher levels of serum cotinine than either white or Mexican-American smokers despite reporting to have smoked the same number of cigarettes a day. The study concluded that these differences may explain why blacks find it harder to quit and are more likely to experience higher rates of lung cancer than white smokers. The authors suggest that biological differences may account for the differential health status of certain groups. Studies like this contribute to a trajectory of research that links race and genetics to disease. However, by assuming a tight link between nicotine metabolism and race, researchers may overlook other biological or environmental mechanisms that could explain the elevated cotinine. They also rule out racism on the part of physicians as an explanation of excess cancer deaths among blacks. A recent study found racial differences in referral for potentially curative surgery among patients diagnosed with early-stage lung cancer associated with smoking.

Research on the relative incidence of disease among racialized groups reflects a paradigm of inquiry that presumes racial differences exist. "Race biology," as described by Gary King, reflects current sociopolitical beliefs, values, and agendas regarding racial differences and is "predisposed to and rewarded for investigating 'inherent differences' rather than commonality." Research findings--such as differences in nicotine metabolism-- provide the promise of drug therapies based on presumed genetic differences between racialized groups. Such targeted medicines are a hallmark of the new genomic medicine.

B. Race and Pharmacogenomics

The emergence of the field of pharmacogenomics is based on the promise of individually tailored drugs; therapeutics will be tailored to the unique genetic makeup of specific populations. Those more likely, or less likely, to respond to a particular medicine, or those likely to have a severe adverse event, will be identified through genomic analysis. Pharmaceutical companies believe that such tests, and the medicines based on them, will be an important feature of health care in the future; intense and highly competitive research is underway.

Pharmacogenomics creates drugs for individuals by matching medicines to patients' personal genetic codes. However, in practice, research targets variation within pre-defined racialized groups, not individuals. According to a recent article in the Washington Post, "[r]ace influences which people are genetically predisposed to lack various enzymes needed to break down medications. Without those enzymes, the medication can have either a heightened or lessened effect." In this case, race is identified as the independent variable that explains the necessary presence or absence of a biochemical agent that aids the metabolism of the drug. The use of the word "lack" redirects focus from the limitations of synthetic pharmacopoeia to the biological shortcomings associated with particular racialized groups. Who will be defined as "normal?" Racial thinking, or the belief that race is defined by biological differences between groups of individuals, informs the search for genetically tailored therapeutics intended to compensate for deviations from an unstated standard of genomic normality.

Although the idea of individually tailored therapy is the goal, it appears likely that products will actually be targeted according to race. One can only speculate on the cultural impact of the commercialization of drugs for racialized populations and the decision by pharmaceutical companies to bring to market therapeutics created for a certain group of consumers. The Food and Drug Administration (FDA) recently approved a new glaucoma drug, Travatan, which is marketed as, "the first glaucoma drug to demonstrate greater effectiveness in black patients." Close reading of the FDA-approved package insert discloses that "[i]t is not known at this time whether this difference [in efficacy] is attributed to race or to heavily pigmented irides." This turn toward a population-based approach to health care product marketing raises the possibility that drug development will build upon and strengthen current notions of racial difference. Health disparities do exist; individuals who self-identify as black are more likely to suffer from glaucoma-related blindness. But will medicines targeted by race alleviate those differences in health outcomes or disguise other explanations of disparities, such as lack of access to routine preventive eye care? The danger is that more and more diseases will be "racialized," and at the same time, the idea that racial differences exist and are inherent is reinforced. Careful policy guidelines on the marketing of medicines (and other health care products) to racially defined groups are needed. These guidelines must pay attention to language in order to avoid the suggestion that biologically distinct human races exist. One policy suggestion is to insist on neutral words such as "ancestry" when discussing population-level genetic variation, avoiding potentially misleading terms.

Pharmacogenomics research is the study of the genetic basis for differential drug responses between individuals. Identifying those genetic differences depends upon access to research databases that reflect a wide range of difference across the human population. Genetic variations, called SNPs, provide the raw material for research. SNPs occur at the rate of one in approximately 300 base pairs. The promise of SNPs research is the discovery of genes involved in human disease, such as asthma, diabetes, heart disease, schizophrenia, and cancer. (At the molecular level, sickle cell anemia is the result of a variant SNP.) SNPs are believed to play a major role in how humans respond to environmental insults such as bacteria, viruses, toxins, and chemicals (e.g. nicotine), including drugs and other therapies. The NIH, as well as private companies, have set up databases including a "representative" sample of human DNA. Because these databases must reflect the human population, how researchers conceptualize the racial or ethnic background of blood samples reveals a great deal about existing taxonomies of race.

Initially, databases were set up reflecting known social categories of difference. The Coriell Cell Repository, for example, includes cell lines-- called "human variation panels"--from an amalgam of people, including such conceptually distinct categories as African American, Caribbean, Greek, Caucasian, Chinese, South American (Andes), and Southwestern American Indian. Recognizing the issues we have identified in this paper, the NIH took a very different tact in setting up its "DNA Polymorphism Discovery Resource." Established in 1998, samples were collected from 450 male and female U.S. citizens, apparently with the intention of reflecting the country's diversity. In order to avoid the creation of a database that could be mined and studied for difference by race, individual samples are not identified racially, rather, continental origin for the entire panel is presented.

It remains to be seen whether this strategy will overcome the strong tendency of researchers who wish to stratify their samples according to "traditional" categories of race. It is, however, an example of a rare public policy choice--a decision to avoid the imposition of categories of difference that do not adequately reflect actual genetic variation in the human population.

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Professor Vernellia R. Randall
Institute on Race, Health Care and the Law
The University of Dayton School of Law
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Email: randall@udayton.edu


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