Duana Fullwiley

The Molecularization of Race: Institutionalizing Human Difference in Pharmacogenetics Practice

In the contemporary United States an increasingly palpable scientific trend to individualize medicine has ushered in new debates on the biological basis of race. Medical researchers, consumers, and public science funding agencies are all grappling with how much importance to attribute to racial difference in drug and disease susceptibility. Many are furthermore trying to determine when, and at what level, racial differences influence, and are influenced by, biogenetic factors. As health disparities for common diseases are evermore characterized as disproportionately burdening African Americans, Native Americans and Mexican Americans, research on the genetics of race for health is increasingly framed as an anodyne ethical obligation. Those who take such stands argue that a ‘colorblind approach to medicine will lead to a disservice of minorities’ (Risch et al., 2002, p. 11; Tate and Goldstein, 2004, p. S40) and ‘will retard progress in biomedical research’ (Burchard et al., 2003, p. 1171). Nonetheless, the difficulties of racial conceptual coherence abound when dealing with Homosapiens (Kittles and Weiss, 2003, p. 36; Lieberman et al., 1992, p. 302). Many wonder how medicine can faithfully deploy a concept that has repeatedly been deemed genetically tenuous and scientifically arbitrary (Graves, 2001, pp. 182–185; Smedley, 1999, pp. 307–309). Today various genetic units of analysis allow researchers to focus on the frequency of traits (rather than dichotomous values) in some groups when compared to others. Will the observation of such frequencies, as seen in US ‘Caucasians’ as opposed to ‘minorities’ outdo and rewrite the former claims that race is not genetic (Lewontin, 1972; Livingstone, 1969)? Lastly, will institutionalizing race at the molecular level truly prove therapeutic for individuals, and also for society? Such questions constitute some of the most basic practical concerns for pharmacogenetics scientists as well as for those concerned with health disparities in the life and social sciences more broadly. An attentive reading of one key set of papers in these debates reveals that neither prize nor Science as Culture Vol. 16, No. 1, 1–30, March 2007

Race and Genetics: Attempts to Define the Relationship

Many researchers working in the field of human genetics in the United States have been caught between two seemingly competing messages with regard to racial categories and genetic difference. As the human genome was mapped in 2000, Francis Collins, the head of the publicly funded project, together with his privately funded rival, announced that humans were 99.9 percent the same at the level of their genome. That same year, the National Institutes of Health (NIH) began a research program on pharmacogenetics that would exploit the .01 percent of human genetic difference, increasingly understood in racial terms, to advance the field of pharmacy. First, this article addresses Collins’ summary of what he called the ‘vigorous debate’ on the relationship between race and genetics in the open-access special issue of Nature Genetics entitled ‘Genetics for the Human Race’ in 2004. Second, it examines the most vexed (if not always openly stated) issue at stake in the debate: that many geneticists today work with the assumption that human biology differs by race as it is conceived through American census categories. It then presents interviews with researchers in two collaborating US laboratories who collect and organize DNA by American notions of ‘race/ethnicity’ and assume that US race categories of classification largely traduce human biogenetic difference. It concludes that race is a practical and conceptual tool whose utility and function is often taken for granted rather than rigorously assessed and that ‘rational medicine’ cannot precede a rational approach to addressing the nature of racial disparities, difference and inequality in health and society more broadly.

Discriminate Biopower and Everyday Biopolitics: Views on Sickle Cell Testing in Dakar

Many physicians in Senegal and France, where most Senegalese sickle cell specialists are partially trained, assume that genetic testing that could imply selective abortion for people with sickle cell would run counter to the religious and cultural ethics of people living in Dakar. Senegalese affected by this genetic disease, however, often cite “traditional” rationales to indicate why such testing, if offered, might appeal to them. The reluctance of medical practitioners to entertain such testing technologies for their patients evinces a protectionist attitude toward care—an attitude that emerges within a context in which family planning and a blind concentration on HIV/AIDS have created a public health system that completely overlooks sickle cell anemia. This discriminate biopower leaves everyday biopolitics largely in the hands of families faced with this disease. It falls to them to pragmatically calculate the value that genetic testing may, or may not, hold for their own lives.

The "contemporary synthesis": when politically inclusive genomic science relies on biological notions of race.

This essay outlines the emergence of a contemporary synthesis regarding racial thinking in genetic science and in society more broadly. A departure from what Julian Huxley in 1942 termed the “modern synthesis,” the contemporary version does not purport to leave race thinking behind in favor of evolution, population genetics, and population-based accounts of natural selection and human diversity. Specifically, the contemporary synthesis blends old concepts (such as that of pure human “types,” located within continental land masses) with new attitudes (democratic inclusion, multicultural diversity, and antiracism). Through various examples, the essay shows how this new synthesis combines ideas about human biological difference that draw on measures of physical characteristics and human genetic material that are both race and population based, yet conflated. This specific amalgam allows old notions of racial types to thrive through conceptual framings that comprise ideas that were once imagined to have the potential to liberate society from racial thinking—and that today remain attached to ideas of progress. As an emergent dynamic, the contemporary synthesis holds the possibility of reinvigorating racism, while simultaneously possessing the potential to promote antiracist science education, disease awareness, and social justice efforts.

Biosocial Suffering: Order and Illness in Urban West Africa

In the medical literature in the United States and France, sickle cell trait (HbAS) is generally described as a benign condition. Curiously, however, people in Dakar, Senegal, and women in particular, complain of symptoms attributed to this trait, which most doctors in this part of West Africa diagnose as a moderate form of sickle cell anemia—a professional tendency that is now beginning to change. This article draws on ethnographic materials to understand Senegalese sickle cell trait suffering as an instance of social suffering mediated not only through cultural and biological forms, but also through cultural and biological ‘options’ to be sick. It examines the interplay of social distresses caused by sickle cell trait, and disease, diagnoses. It concludes that suffering attributed to sickle cell trait consists of a complex nexus marked by economic privations, social practices that are specifically gendered as female, religious fatalism and various ecological and environmental stressors. Theoretically, this article joins the concept of social suffering to that of biosociality. The resultant assemblage is ‘biosocial suffering’ whereby women with sickle cell trait articulate and manifest social and physical pains through the biological entity of this recessive allele.

Race, genes, power

. . . [T]he thing is, we treat racism in this country like it’s a style that America went through. Like flared legs and lava lamps. Oh, that crazy thing we did.We were hanging black people. We treat it like a fad instead of a disease that eradicates millions of people. You’ve got to get it at a lab, and study it, and see its origins, and see what it’s immune to and what breaks it down. (Chris Rock, interviewed by Frank Rich, New York Magazine 2014)