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Democratic Mis-haps: The Problem of Democratization in a Time of Biopolitics

Published online by Cambridge University Press:  01 June 2007

Jenny Reardon
Affiliation:
Department of Sociology, University of California Santa Cruz, 235 College 8, Santa Cruz, CA 95064, USA E-mail: [email protected]
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Abstract

Following the stringent critiques of organizers of the Human Genome Diversity Project for excluding people from the initiative’s early planning, subsequent administrators of high-profile efforts to study human genetic variation, such as the International HapMap Project, have made great efforts to stress the importance of including the people who are to be the objects of study in research design and regulation. Such efforts to ‘democratize’ genomics would appear to represent a positive development. However, in practice they have satisfied few as they fail to recognize the most basic lesson of the Human Genome Diversity Project debates: genomics raises questions not just about the inclusion of people, but about their very constitution. Positing concrete, stable subjects in society, current efforts to ‘democratize’ genomics fail to recognize that entangled in the fundamental questions about nature posed by this emergent form of technoscience are fundamental questions about the order and constitution of societies. The creation of sustainable and desirable forms of governance require us to come to terms with challenges posed to liberal democratic practices and values, such as inclusion, in an age defined partially by this mutual dis/ordering of nature and society.

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Articles
Copyright
Copyright © London School of Economics and Political Science 2007

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References

Arditti, R., Brennan, P., & Cavrak, S. (1980). Science and liberation. Boston, MA: South End Press.Google Scholar
Cavalli-Sforza, L.L., Wilson, A.C., Cantor, C.R., Cook-Deegan, R.M., & King, M.C. (1991). Call for a worldwide survey of human genetic diversity: A vanishing opportunity for the human genome project. Genomics, 11 (summer), 490491.CrossRefGoogle ScholarPubMed
Clarke, A., Fishman, J., Fosket, J., Mamo, L., & Shim, J. (2003). Biomedicalization: Technoscientific transformations of health, illness and U.S. biomedicine. American Sociological Review, 68 (April), 161194.CrossRefGoogle Scholar
Coriell Institute for Medical Research (2004). Policy for responsible collection, storage, and research use of samples from identified populations for the NIGMS Human Genetic Cell Repository. URL (accessed March 2007): http://ccr.coriell.org/nigms/comm/submit/collpolicy.htmlGoogle Scholar
Dewey, J. (1927). The public and its problems. Chicago: The Swallow Press. (Original work published in 1927.)Google Scholar
Dewey, J. (1960). The construction of the good. In M. Konvitz, & G. Kennedy, (Eds), The American pragmatists, 201–225. New York: Median Books.Google Scholar
Dobzhansky, T. (1962). Comment. Current Anthropology, 3, 279.Google Scholar
Duster, T. (1990). Backdoor to eugenics. New York: Routledge.Google Scholar
Eglash, R., Croissant, J., Chiro, G., & Fouche, R. (2004). Appropriating technology: Vernacular science and social power. Minneapolis: University of Minnesota Press.Google Scholar
Epstein, S. (forthcoming). Inclusion: The politics of difference in medical research. Chicago: University of Chicago Press.CrossRefGoogle Scholar
Foster, M.W. (2006). Ethical issues in developing a haplotype map with socially defined populations. URL (accessed March 2007): http://www.genome.gov/10001683Google Scholar
Foucault, M. (1997a). Technologies of the self. In P. Rabinow, (Ed.), Michel Foucault: Ethics, subjectivity and truth, 223–252. New York: The New Press.Google Scholar
Foucault, M. (1997b). Polemics, politics and problematizations. In P. Rabinow, (Ed.), Michel Foucault: Ethics, subjectivity and truth, 111–119. New York: The New Press.Google Scholar
Genes without Borders (2006). Genes without Borders? Towards Global Genomic Governance URL (accessed March 2007): http:// http://www.univie.ac.at/transformation/GwB/intro.htmGoogle Scholar
Greely, H.T. (North American Regional Committee, Human Genome Diversity Project) (1997). Proposed model ethical protocol for collecting DNA samples. Houston Law Review, 33, 14311473.Google Scholar
Hacking, I. (1999). The social construction of what? Cambridge, MA: Harvard University Press.Google Scholar
Haraway, D. (1991). Simian, cyborgs, and women. New York: Routledge.Google Scholar
Herzig, R. (2006). Review of Appropriating technology: Vernacular science and social power. Isis, 97, 181182.CrossRefGoogle Scholar
Indigenous Peoples Council on Biocolonialism (n.d.) Indigenous peoples opposition to the HGDP. URL (consulted September 2006): http://www.ipcb.org/resolutions/htmls/summary_indig_opp.htmlGoogle Scholar
IHMC (International HapMap Consortium) (2003). The International HapMap Project. Nature, 426, 789795.CrossRefGoogle Scholar
IHMC (International HapMap Consortium) (2004). Integrating ethics and science in the International HapMap Project. Nature Reviews Genetics, 5, 467475.CrossRefGoogle Scholar
IHMC (International HapMap Consortium) (2005) A haplotype map of the human genome. Nature, 437, 12991320.CrossRefGoogle Scholar
IHMC (International HapMap Project) (n.d. a) About the HapMap. URL (accessed April 2007): http://hapmap.org/thehapmap.html.enGoogle Scholar
IHMC (International HapMap Project) (n.d. b). Which populations are being sampled. URL (accessed September 2006): http://www.hapmap.org/hapmappopulations.html.enGoogle Scholar
IHMC (International HapMap Project) (n.d. c). Guidelines for referring to the HapMap populations in publications and presentations. URL (accessed September 2006): http://www.hapmap.org/citinghapmap.html.enGoogle Scholar
IHMC (International HapMap Project) (n.d. d). Community advisory groups. URL (accessed March 2007): http://www.hapmap.org/cag.html.enGoogle Scholar
Kitcher, P. (2001). Science, truth and democracy. Oxford: Oxford University Press.CrossRefGoogle Scholar
Landecker, H.L. (1999). Between beneficence and chattel: The human biological in law and science. Science in Context, 12, 203225.CrossRefGoogle Scholar
Latour, B. (2005). Making things public: Atmospheres of democracy. Cambridge, MA: MIT Press.Google Scholar
Livingstone, F. (1962). On the non-existence of human races. Current Anthropology, 3, 279.Google Scholar
Minow, M. (1990). Making all the difference: Inclusion, exclusion, and American law. Ithaca, NY: Cornell University Press.Google Scholar
Nationalgeographic.com (n.d.). The Genographic Project. URL (accessed March 2007): https://www3. nationalgeographic.com/genographic/index.htmlGoogle Scholar
Reardon, J. (2004). Decoding race and human difference in a genomic age. Differences: A journal of feminist cultural studies, 15, 3865.CrossRefGoogle Scholar
Reardon, J. (2005). Race to the finish: Identity and governance in an age of genomics. Princeton, NJ: Princeton University Press.Google Scholar
Rose, N., & Novas, C. (2005). Biological citizenship. In A. Ong, & S. Collier, (Eds), Global assemblages: Technologies, politics and ethics as anthropological problems, 439–463. Oxford: Blackwell.Google Scholar
Rosenberg, N.A., Pritchard, J.K., Weber, J.L., Cann, H.M., Kidd, K.K., Zhivotovsky, L.A. et al. (2002). Genetic structure of human populations. Science, 298, 2381.CrossRefGoogle ScholarPubMed
Sclove, R.E. (1995). Democracy and technology. New York: Guilford Press.Google Scholar
Treichler, P.A. (1987). AIDS, homophobia and biomedical discourse: An epidemic of signification. Cultural Studies, 1, 263305.CrossRefGoogle Scholar
Wynne, B. (2006) Public engagement as a means of restoring public trust in science—Hitting the notes, but missing the music? Community Engagement, 9, 211220.Google ScholarPubMed