a1 Department of Society, Human Development, and Health, Harvard School of Public Health, 677 Huntington Avenue, Boston, MA 02115, USA E-mail: dfullwil@hsph.harvard.edu Article author query fullwiley d [Google Scholar]
Abstract 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.
Key Words: genetics; race; rational medicine
Duana Fullwiley is an anthropologist of science and medicine concerned with how personal identity, health status and molecular genetics findings increasingly intersect. She has done ethnographic fieldwork in the US, France and Senegal, West Africa on locally varied versions of sickle cell science and medical care. She is also engaged in fieldwork on emergent genetic technologies of race and ancestry testing for pharmaceutical and identity purposes. Fullwiley is currently a Robert Wood Johnson Health and Society Scholar at the Harvard School of Public Health.
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