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.
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Notes
1 The term ‘rational medicine’ is often used to describe pharmacogenetics. For more on this idea and the ‘dictate’ that race be used to guide this thinking, see Evans and Relling, where, in one of the first reviews on the issue, they write:
… all pharmacogenetic polymorphisms studied to date differ in frequency among ethnic and racial groups. … The marked racial and ethnic diversity in the frequency of functional polymorphisms in drug- and xenobiotic-metabolizing enzymes dictates that race be considered in studies aimed at discovering whether specific genotypes or phenotypes are associated with disease risk or drug toxicity (1999: 488).
2 See the goals and recent grants of the ‘Ethics and Communities’ arm of the program at www.nigms.nih.gov/pharmacogenetics/prnsupp_abstracts.html
3 American census category definitions of race are often used in genetics studies in spite of thoughtful editorials that detail the pitfalls of this practice (see Nature Genetics, 2000).
4 All interviews were conducted on a Sony digital minidisk recording device. The timing of these pauses is based on the digital timing mechanism inscribed in each recording.
5 Due to either their high profiles, or to the extreme specificity of their research, scientists’ real names are used throughout (when they are named). Consent to do so was obtained by the author and approved through New York University's IRB option for attribution on the part of human subjects.
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Acknowledgements
The author would like to thank Troy Duster, Filippa Lentzos, Alondra Nelson, Rayna Rapp and Matt Wray for their helpful comments. This research was funded by a grant from the National Science Foundation, no. 0208100. The writing phase was supported by the Robert Wood Johnson Health and Society Scholars program.
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Fullwiley, D. Race and Genetics: Attempts to Define the Relationship. BioSocieties 2, 221–237 (2007). https://doi.org/10.1017/S1745855207005625
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DOI: https://doi.org/10.1017/S1745855207005625