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Race, Risk and Medicine in the Age of ‘Your Own Personal Genome’

Published online by Cambridge University Press:  01 December 2008

Nikolas Rose
Nikolas Rose
Affiliation:
BIOS Centre for the Study of Bioscience, Biomedicine, Biotechnology and Society, London School of Economics and Political Science, Houghton Street, London WC2A 2AEUK E-mail: [email protected]
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Abstract

The intertwined genealogies of racialization and medicalization are mutating once more, with the much heralded arrival of personal genomics. A proliferation of commercial organizations now offer web-based services that, on the basis of an analysis of a DNA sample from a cheek swab and at the cost of a few hundred dollars, promise to scan millions of variations in ‘my genome’ and to tell me where my ancestors came from, to compare my genome with others, and to enable me to calculate my risk for dozens of diseases and conditions from age-related macular degeneration, through Alzheimer's disease and prostate cancer, to restless legs. These new forms of genetic information arise in part from a crisis in genomic medicine, combined with a radical reduction in the costs of gene sequencing. They are linked to a new form of thinking about the genomic bases of disease that link ancestry and medicine in new ways. These cannot be understood simply by deploying the familiar tropes of sociological and anthropological critique—by repeating that ‘race has no biological meaning’. In this article I try to characterize the new ways of thinking about individuals and populations, about risk and responsibility, and about race and population differentiation that are taking shape, and explore their personal and social implications.

Keywords

AncestryBiopoliticsMedicinePersonal GenomicsRaceSusceptibility
Type
Lecture
Information
BioSocieties , Volume 3 , Issue 4 , December 2008 , pp. 423 - 439
Copyright
Copyright © London School of Economics and Political Science 2008

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References

American Society of Human Genetics. (2007). ASHG statement on direct-to-consumer genetic testing in the United States by Kathy Hudson, Gail Javitt, Wylie Burke, Peter Byers, and ASHG Social Issues Committee. American Journal of Human Genetics, 81, 635–637.CrossRefGoogle Scholar
Bolnick, D.A., Fullwiley, D., Duster, T., Cooper, R.S., Fujimura, J.H., Kahn, J. et al. (2007). The science and business of genetic ancestry testing. Science, 318, 399–400.Google Scholar
Burchard, E.G., Ziv, E., Coyle, N., Gomex, S.L., Tang, H., Karter, A.J. et al. (2003). The importance of race and ethnic background in biomedical research and clinical practice. New England Journal of Medicine, 348, 1170–1175.CrossRefGoogle ScholarPubMed
Chimpanzee Sequencing and Analysis Consortium. (2005). Initial sequence of the chimpanzee genome and comparison with the human genome. Nature, 437, 69–87.Google Scholar
Choudhry, S., Coyle, N.E., Tang, H., Salari, K., Lind, D., Clark, S.L. et al. (2006). Population stratification confounds genetic association studies among Latinos. Human Genetics, 118, 652–664.CrossRefGoogle ScholarPubMed
Collins, F.S. (2004). What we do and don't know about ‘race’, ‘ethnicity’, genetics and health at the dawn of the genome era. Nature Genetics, 36, S13–S15.CrossRefGoogle Scholar
Darwin, C. (1968). The origin of species by means of natural selection, edited with an introduction by J.W. Burrow. Harmondsworth: Penguin.Google Scholar
De Queiroz, K. (2005). Ernst Mayr and the modern concept of species. Proceedings of the National Academy of Sciences, 102, 6600–6607.CrossRefGoogle Scholar
Dunn, L.C. (1959). Heredity and evolution in human populations. Cambridge, MA: Harvard UP.Google Scholar
Epstein, S. (2007). Inclusion: The politics of difference in medical research. Chicago: U Chicago Press.Google Scholar
Farrer, L.A., Cupples, L.A., Haines, J.L., Hyman, B., Kukull, W.A., Mayeux, R. et al. (1997). Effects of age, sex, and ethnicity on the association between apolipoprotein E genotype and Alzheimer disease: A meta-analysis. APOE and Alzheimer Disease Meta Analysis Consortium. Journal of the American Medical Association, 278, 1349–1356.CrossRefGoogle ScholarPubMed
Fox, J.L. (2008). What price personal genome exploration? Nature Biotechnology, 26, 1105–1108.CrossRefGoogle ScholarPubMed
Frazer, K.A., Ballinger, D.G., Cox, D.R., Hinds, D.A., Stuve, L.L., Gibbs, R.A. et al. (2007). A second generation human haplotype map of over 3.1 million SNPs. Nature, 449, 851–861.Google ScholarPubMed
Fullwiley, D. (2007). Race and genetics: Attempts to define the relationship. BioSocieties, 2, 221–237.Google Scholar
Fullwiley, D. (2008). The biologistical construction of race: ‘Admixture’ technology and the new genetic medicine. Social Studies of Science, 38, 695–735.CrossRefGoogle ScholarPubMed
Gigerenzer, G. (1991). From tools to theories: A heuristic of discovery in cognitive psychology. Psychological Review, 98, 254–257.Google Scholar
Lee, S.S., Mountain, J., Koenig, B., Altman, R., Brown, M., Camarillo, A. et al. (2008). The ethics of characterizing difference: Guiding principles on using racial categories in human genetics. Genome Biology, 9, 404.Google Scholar
Lewontin, R. (1972). The apportionment of human diversity. Evolutionary Biology, 6, 391–398.Google Scholar
Livingstone, F. (1962). On the non-existence of human races. Current Anthropology, 3, 279–281.CrossRefGoogle Scholar
Manolio, T. (2007). Finding effects of environment and genes on disease: More needles, more haystacks. US Department of Health and Human Services. URL (accessed November 2008): www.bio21.com.au/admin/file/con tent27/c2/Teri%20Manolio.pdf.Google Scholar
M'charek, A. (2000). Technologies of population: Forensic DNA practices and the making of differences and similarities. Configurations, 8, 121–158.Google Scholar
M'charek, A. (2005). The Human Genome Diversity Project: An ethnography of scientific practice. Cambridge: Cambridge UP.Google Scholar
Marks, J. (2002). What it means to be 98% chimpanzee: Apes, people, and their genes. Berkeley: U California Press.Google Scholar
Mayr, E. (1942). Systematics and the origin of species from the viewpoint of a zoologist: New York: Dover Publications.Google Scholar
Nature Genetics. (2004). Editorial. Nature Genetics, 1.Google Scholar
Ng, P.C., Zhao, Q., Levy, S., Strausberg, R.L., & Venter, J.C. (2008). Individual genomes instead of race for personalized medicine. Clinical Pharmacology and Therapeutics, 84, 306–309.CrossRefGoogle ScholarPubMed
Novas, C. (2006). The political economy of hope: Patients’ organizations, science and biovalue. BioSocieties, 1, 289–305.CrossRefGoogle Scholar
Pàlsson, G. (2007). How deep is the skin? The geneticization of race and medicine. BioSocieties, 2, 257–272.CrossRefGoogle Scholar
Pearson, T.A., & Manolio, T.A. (2008). How to interpret a genome-wide association study. Journal of the American Medical Association, 299, 1335–1344.Google Scholar
Pitkin, H.F. (1967). The concept of representation: Berkeley: U California Press.CrossRefGoogle Scholar
Rabinow, P. (1996). Artificiality and enlightenment: From sociobiology to biosociality. In Essays on the Anthropology of Reason, 91–112. Princeton, NJ: Princeton UP.Google Scholar
Reardon, J. (2005). Race to the finish: Identity and governance in an age of genomics. Princeton, NJ: Princeton UP.Google Scholar
Reardon, J. (2007). Democratic mis-haps: The problem of democratization in a time of biopolitics. BioSocieties, 2, 239–256.Google Scholar
Risch, N., Burchard, E., Ziv, E., & Tang, H. (2002). Categorization of humans in biomedical research: Genes, race and disease. Genome Biology, 3(7), comment2007.CrossRefGoogle ScholarPubMed
Risch, N.J. (2000). Searching for genetic determinants in the new millennium. Nature, 405, 847–856.Google Scholar
Rose, N. (1988). Calculable minds and manageable individuals. History of the Human Sciences, 1, 179–200.CrossRefGoogle ScholarPubMed
Rose, N. (2006). The politics of life itself: Biomedicine, power and subjectivity in the twenty-first century. Princeton, NJ: Princeton UP.Google Scholar
Sankar, P., Cho, M. K., & Mountain, J. (2007). Race and ethnicity in genetic research. American Journal of Medical Genetics A., 143A(9), 961–970.Google Scholar
Schwartz, R.S. (2001). Racial profiling in medical research. New England Journal of Medicine, 344, 1392–1393.Google Scholar
Sleeboom-Faulkner, M. (2006). How to define a population: Cultural politics and population genetics in the People's Republic of China and the Republic of China. BioSocieties, 1, 399–419.Google Scholar
Tang, H., Coram, M., Wang, P., Zhu, X, & Risch, N. (2006). Reconstructing genetic ancestry blocks in admixed individuals. American Journal of Human Genetics, 79, 1–12.Google Scholar
Tate, S.K., & Goldstein, D.B. (2004). Will tomorrow's medicines work for everyone? Nature Genetics, 36, S34–S42.CrossRefGoogle ScholarPubMed
Thomas, G., Jacobs, K. B., Yeager, M., Kraft, P., Wacholder, S., Orr, N. (2008). Multiple loci identified in a genome-wide association study of prostate cancer. Nature Genetics, 40, 310–315.CrossRefGoogle Scholar
Van Ommen, G.-J.B. (2008). Popper revisited: GWAS here, last year. European Journal of Human Genetics, 16, 1–2.CrossRefGoogle ScholarPubMed
Wailoo, K., & Pemberton, S.G. (2006). The troubled dream of genetic medicine: Ethnicity and innovation in Tay-Sachs, cystic fibrosis, and sickle cell disease. Baltimore, MD: Johns Hopkins UP.CrossRefGoogle Scholar
Waples, R.S., & Gaggiotti, O. (2006). What is a population? An empirical evaluation of some genetic methods for identifying the number of gene pools and their degree of connectivity. Molecular Ecology, 15, 1419–1439.CrossRefGoogle ScholarPubMed
Wellcome Trust Case Control Consortium. (2007). Genome-wide association study of 14,000 cases of seven common diseases and 3,000 shared controls. Nature, 447, 661–678.Google Scholar
Wilson, J.F., Weale, M.E., Smith, A.C., Gratrix, F., Fletcher, B., Thomas, M.G. et al. (2001). Population genetic structure of variable drug response. Nature Genetics, 29, 265–269.CrossRefGoogle ScholarPubMed