Blood and stories: how genomics is rewriting race, medicine and human history
Patterns of Prejudice
Volume 40, Numbers 4/5 (2006), Special Issue: Race and Contemporary Medicine
pages 303-333
DOI: 10.1080/00313220601020064
Priscilla Wald, Professor of English and Women’s Studies
Duke University
In 2003 Howard University announced its intention to create a databank of the DNA of African Americans, most of whom were patients in their medical centre. Proponents of the decision invoked the routine exclusion of African Americans from research that would give them access to the most up-to-date medical technologies and treatments. They argued that this databank would rectify such exclusions. Opponents argued that such a move tacitly affirmed the biological (genetic) basis of race that had long fuelled racism as well as that the potential costs were not worth the uncertain benefits. Howard University’s controversial decision emerges from research in genomic medicine that has added new urgency to the question of the relationship between science and racism. This relationship is the topic of Wald’s essay. Scientific disagreements over the relative usefulness of ‘race’ as a classification in genomic medical research have been obscured by charges of racism and political correctness. The question takes us to the assumptions of population genomics that inform the medical research, and Wald turns to the Human Genome Diversity Project, the new Genographics Project and the 2003 film Journey of Man to consider how racism typically inheres not in the intentions of researchers, but in the language, images and stories through which scientists, journalists and the public inevitably interpret information. Wald demonstrates the importance of understanding those stories as inseparable from scientific and medical research. Her central argument is that if we understand the power of the stories we can better understand the debates surrounding race and genomic medicine, which, in turn, can help us make better ethical and policy decisions and be useful in the practices of science and medicine.
To understand how genomic research can reproduce racism, it is necessary to understand how racism is articulated through that research as it is practised in the context of particular social formations. The articulation is produced through stories of race and genomic research, which take many forms as they make their way from the scientific community to the general public. Stories about the research reach public consciousness through such controversial decisions as the NHGC databank as well as through the discoveries and innovations emerging from the labs of pharmaceutical companies, universities and federal institutions. Accounts of genomic research offer exciting promises, ranging from new explanations (and treatments) for some of the most feared medical problems, from cancer to avian flu, to new ways of understanding (and managing) human behaviour. They also capture the public imagination with claims of new discoveries that offer insight into the mysteries of human origins and human history, and the genealogies of individuals as well as groups. The claims and promises fuse in the stories of genomic research broadcast in the mainstream media, and they in turn influence policy and funding decisions and help to shape future research. These stories are fundamental in the production of scientific and medical knowledge and, therefore, as I argue in what follows, attention to them needs to be incorporated into scientific and medical research.
…Genomic information is notoriously difficult to interpret even by researchers in the field. The frequency of alleles that mark genetic drift—the the rate of genetic changes resulting from mutations, or divergent alleles, in relatively inbred populations—tells where and when there was a divergence within a group. Those alleles are used to mark ancestry. But, as Michael J. Bamshad and Steve E. Olson note, ‘how groups are divided depends on which genes are examined; simplistically put, you might fit into one group based on your skin-color genes but another based on a different characteristic’. The DNA that yields information about one’s ancestry—typically mitochondrial and Y-chromosome DNA—in fact tells only part of the story of genetic ancestry. The complexity of nuclear DNA does not yield sufficiently clear information to complete it. Moreover, as Jay Kaufman has pointed out, Risch et al. ’s study relies on the dismissal of ‘intermediate groups’, such as ‘Hispanic Americans’, whom Risch et al. acknowledge could ‘aggregate genetically with Caucasians, Native Americans, African Americans or form their own cluster’ and are therefore ‘not easily classified’, but the size of those groups attenuates their claims. They are too large to be dismissed as an exception. Intermixture is increasingly the rule…
…Pointing an accusatory finger at ‘political correctness’ not only deflects the scientific dispute, but also ignores the medical importance of the social consequences of racism, measured in health outcomes. Drawing a stark contrast between medical science and social concerns, a distinction that Risch et al. ’s article itself troubles, that accusation renders social concerns suspect except as they provide epidemiologically useful information. Neither Wade nor Risch et al . address what constitutes epidemiologically useful information. Risch et al. dismiss potential abuses of genomic information (such as those that fuel racism) as unscientific, arguing
that identifying genetic differences between races and ethnic groups, be they for random genetic markers, genes that lead to disease susceptibility or variation in drug response, is scientifically appropriate. What is not scientific is a value system attached to any such findings.
But this assertion presumes that science and medicine can be divorced from their social contexts and that information circulates in value-neutral terms. History does not support that presumption, and calling racism ‘not scientific’ does not address the value system or alleviate the problems—including health outcomes—associated with it…
…Taking racism into account does not mean refusing to collect and classify data in medical research according to race and ethnicity. On the contrary, those classifications provide important epidemiological information, as Risch et al. maintain, about the impact of social and environmental factors—including socio-economic inequities and cultural biases—on the health of individuals and groups. As Troy Duster argues, the way to ‘recognize, engage, and clarify the complexity of the interaction between any taxonomies of race and biological, neurophysiological, society, and health outcomes’ is to consider ‘how science studies deploy the concept of race’. The story of how biotechnology is revolutionizing medicine has put genomic research very much into public consciousness and has made genetic explanations of health disparities among individuals and especially groups the ‘default position’. Distinguishing between genomic and social and environmental factors in disease susceptibility and drug response is notoriously difficult, especially since, as Keita et al. note, ‘some environmental influences can be so subtle and occur so early in life as to be missed . . . ’. Yet, that distinction determines how researchers and practitioners understand and address the problem of health disparities. ‘Race’ and ‘ethnicity’ are very different as surrogates for genomics and for social and environmental factors in the assessment of health outcomes, which is why the larger stories in which the research is embedded are scientifically and medically as well as socially relevant…
Read the entire article here.