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“Bioethics in Action” and Human Population Genetics Research

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Abstract

Recent disputes about human population genetics research have been provoked by the field's political vulnerability (the historic imbalance of power between the geneticists and the people they study) and conceptual vulnerability (the mismatch between scientific and popular understandings of the genetic basis of collective identity). The small, isolated groups often studied by this science are now mobilizing themselves as political subjects, pressing sovereignty claims, and demanding control over the direction and interpretation of research. Negotiations between the geneticists and the people asked to donate DNA have resulted not only in explicit bioethics protocols but also in diffuse anxiety over the incommensurability between expert and non-expert views about genetic evidence for identity claims. This article compares two disputes over genetics research: the Human Genome Diversity Project and the use of genetics to prove identity claims among the Melungeons of Tennessee. The case studies illustrate “bioethics in action”: how particular controversies and interests drive the production of bioethics discourses and techniques (such as informed consent protocols). They also illustrate some limits on the usual apparatus of bioethics in overcoming this science's multiple vulnerabilities.

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References

  • Barsh, Russel Lawrence (1993). A “New Partnership” for Indigenous Peoples: Can the United Nations Make a Difference? American Indian Culture and Research Journal 17(1): 197–227.

    Google Scholar 

  • Beale, Calvin L. (1957). American Triracial Isolates: Their Status and Pertinence to Genetic Research. Eugenics Quarterly 4(4): 187–196.

    Google Scholar 

  • Beale, Calvin L. (1990). Notes on Visit to Hancock County, Tennessee. In A Taste of the Country: A Collection of Calvin Beale's Writings. P.A. Morrison, ed. University Park, PA: The Pennsylvania State University Press.

    Google Scholar 

  • Berry, Brewton (1963). Almost White. New York: Macmillan.

    Google Scholar 

  • Beskow, Laura M., Wylie Burke, Jon F. Merz, Patricia A. Barr, Sharon Terry, Victor B. Penchaszadeh, Lawrence O. Gostin, Marta Gwinn, and Muin J. Khoury (2001). Informed Consent for Population-Based Research Involving Genetics. Journal of the American Medical Association 286(18): 2315–2321.

    Article  PubMed  Google Scholar 

  • Blu, Karen I. (1980). The Lumbee Problem: The Making of an American Indian People. New York: Cambridge University Press.

    Google Scholar 

  • Bosk, Charles L. (1992). All God's Mistakes: Genetic Counseling in a Pediatric Hospital. Chicago: The University of Chicago Press.

    Google Scholar 

  • Bosk, Charles L. (1999). Professional Ethicist Available: Logical, Secular, Friendly. Daedalus 128(4): 47–68.

    Google Scholar 

  • Bowman, James E. (1999). The Human Genome Diversity Project as a Complement to Human Population Genetics. Politics and the Life Sciences 18(2): 289–290.

    PubMed  Google Scholar 

  • Bradman, Neil, and Mark Thomas (1998). Why Y? The Y Chromosome in the Study of Human Evolution, Migration and Prehistory. Electronic document, http://www.ucl.ac.uk/tcga/ScienceSpectra-pages/SciSpect-14-98.html, accessed May 27, 2002.

  • Brodwin, Paul (2002). Genetics, Identity, and the Anthropology of Essentialism. Anthropological Quarterly 75(2): 323–330.

    Google Scholar 

  • Callahan, Daniel (1999). The Social Sciences and the Task of Bioethics. Daedalus 128(4): 275–294.

    PubMed  Google Scholar 

  • Cavalli-Sforza, Luigi L., P. Menozzi, and A. Piazza (1994). The History and Geography of Human Genes. Princeton, NJ: Princeton University Press.

    Google Scholar 

  • Cavalli-Sforza, Luigi L., Allan C. Wilson, Charles R. Cantor, Robert M. Cook-Deegan, and Mary-Claire King (1991). Call for a World-Wide Survey of Human Genetic Diversity. Genomics 11(2): 490–491.

    PubMed  Google Scholar 

  • Cavender, Anthony P. (1981). The Melungeons of Upper East Tennessee: Persisting Social Identity. Tennessee Anthropologist 6(1): 7–36.

    Google Scholar 

  • Cayuqueo, Nilo (1993). HGD Project, SAIIC Response. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9311/0069.html, accessed January 26, 2002.

  • Committee on Human Genome Diversity, National Research Council (1997). Evaluating Human Genetic Diversity. Washington, DC: The National Academies Press.

    Google Scholar 

  • Cunningham, Hilary (1998). Colonial Encounters in Postcolonial Contexts: Patenting Indigenous DNA and the Human Genome Diversity Project. Critique of Anthropology 18(2): 205–233.

    Google Scholar 

  • DeMarce, Virginia Easley (1992). “Verry Slitly Mixt”: Tri-Racial Isolate Families of the Upper South—A Genealogical Study. National Genealogical Society Quarterly 80(1): 5–35.

    Google Scholar 

  • DeMarce, Virginia Easley (1993). Looking at Legends—Lumbee and Melungeon: Applied Genealogy and the Origins of Tri-racial Isolate Settlements. National Genealogical Society Quarterly 81(1): 24–45.

    Google Scholar 

  • DeVries, Raymond, and Janardan Subedi, eds. (1998). Bioethics and Society: Constructing the Ethical Enterprise. Upper Saddle River, NJ: Prentice Hall.

    Google Scholar 

  • Elder, Pat Spurlock (1999). Melungeons: Examining an Appalachian Legend. Blountville, TN: Continuity Press.

    Google Scholar 

  • Elliott, Carl, and Paul Brodwin (2002). Identity and Genetic Ancestry Tracing. British Medical Journal 325: 1469–1471.

    PubMed  Google Scholar 

  • Evans, John Hyde (2002). Playing God? Human Genetic Engineering and the Rationalization of Public Bioethical Debate. Chicago: University of Chicago Press.

    Google Scholar 

  • Everett, C.S. (1999). Melungeon History and Myth. Appalachian Journal 26(4): 358–409.

    Google Scholar 

  • Foster, Morris W., Deborah Bernsten, and Thomas H. Carter (1998). A Model Agreement for Genetic Research in Socially Identifiable Populations. American Journal of Human Genetics 63: 696–702.

    Article  PubMed  Google Scholar 

  • Fox, Daniel M. (1993). View the Second. Hastings Center Report 23(6): S12–S13.

    Google Scholar 

  • Gannett, Lisa (2001). Racism and Human Genome Diversity Research: The Ethical Limits of “Population Thinking.” Philosophy of Science 68(3): S479–S492.

    Article  Google Scholar 

  • Gilbert, William Harlen (1946). Memorandum Concerning the Characteristics of the Larger Mixed-Blood Racial Islands of the Eastern United States. Social Forces 24: 438–447.

    Google Scholar 

  • Gillespie, John H. (1998). Population Genetics: A Concise Guide. Baltimore, MD: The Johns Hopkins University Press.

    Google Scholar 

  • Greely, Henry (1994). Status of the HGD Project. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9402/0020.html, accessed January 27, 2002.

  • Greely, Henry (1995). Papua New Guinea, the Human Genome Diversity Project. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9510.0225.html, accessed January 27, 2002.

  • Greely, Henry (1997). The Ethics of Human Genome Diversity Project: The North American Regional Committee's Proposed Model Ethical Protocol. In Human DNA: Law and Policy. B.M. Knoppers, ed., pp. 239–256. Hague, the Netherlands: Kluwer Law International.

    Google Scholar 

  • Greely, Henry (1999). The Overlooked Ethics of the Human Genome Diversity Project. Politics and the Life Sciences 18(2): 297–299.

    PubMed  Google Scholar 

  • Greely, Henry (2001). Human Genome Diversity: What About the Other Human Genome Project? Nature Reviews Genetics 2(3): 222–227.

    Article  PubMed  Google Scholar 

  • Harry, Debra, and Jonathan Marks (1999). Human Population Genetics versus the HGDP. Politics and the Life Sciences 18(2): 303–305.

    PubMed  Google Scholar 

  • Hartl, Daniel L., and Andrew G. Clark (1997). Principles of Population Genetics. Sunderland, MA: Sinauer Associates, Inc.

    Google Scholar 

  • Henige, David (1984). Origin Traditions of American Racial Isolates: A Case of Something Borrowed. Appalachian Journal 1(3): 201–213.

    Google Scholar 

  • Henige, David (1998). The Melungeons Become a Race. Appalachian Journal 25(3): 270–286.

    Google Scholar 

  • Hess, David J. (1997). If You're Thinking of Living in STS: A Guide for the Perplexed. In Cyborgs and Citadels: Anthropological Interventions in Emerging Sciences and Technologies. G.L. Downey and J. Dumit, eds., pp. 143–164. School of American Research Advanced Seminar Series. Santa Fe, NM: School of American Research Press.

    Google Scholar 

  • Human Genome Diversity Committee (1993). Summary Document, Incorporating the HGD Project Outline and Development, Proposed Guidelines, and Report of the International Planning Workshop held in Porto Conte, Sardinia (Italy) 9–12 September, 1993, Vol. 2002. Electronic document, http://www.stanford.edu/group/morrinst/hgdp/summary93.html, accessed August 20, 2002.

  • International Association of the Mataatua Declaration (1996). Mataatua Declaration on Cultural and Intellectual Property Rights of Indigenous People. Cultural Survival Quarterly 20(2): 52–53.

    Google Scholar 

  • Ivey, Saundra Keyes (1977). Ascribed Ethnicity and the Ethnic Display Event: The Melungeons of Hancock County, Tennessee. Western Folklore 36(1): 85–107.

    Google Scholar 

  • Jacquard, Albert (1974). The Genetic Structure of Populations. New York: Springer-Verlag.

    Google Scholar 

  • Jonsen, Albert R. (1998). The Birth of Bioethics. New York: Oxford University Press.

    Google Scholar 

  • Jonsen, Albert R. (2001). Beating Up Bioethics. Hastings Center Report 31(5): 40–45.

    Google Scholar 

  • Juengst, Eric T. (1998). Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically Useless. Kennedy Institute of Ethics Journal 8(2): 183–200.

    PubMed  Google Scholar 

  • Kennedy, N. Brent (1997). The Melungeons: The Resurrection of a Proud People. Macon, GA: Mercer University Press.

    Google Scholar 

  • Kidd, Kenneth K., and Judith R. Kidd (1999). Experience and Preliminary Results in Human Genome Diversity Research. Politics and the Life Sciences 18(2): 314–316.

    PubMed  Google Scholar 

  • Kleinman, Arthur, Renee C. Fox, and Allan M. Brandt, eds. (1999). Bioethics and Beyond. Daedalus: Journal of the American Academy of Arts and Sciences 128(4).

  • Latour, Bruno (1987). Science in Action. Cambridge, MA: Harvard University Press.

    Google Scholar 

  • Lewontin, R.C. (1985). Population Genetics. Annual Review of Genetics 19: 81–102.

    Article  PubMed  Google Scholar 

  • Lock, Margaret (1994). Interrogating the Human Diversity Genome Project. Social Science and Medicine 39(5): 603–606.

    Article  PubMed  Google Scholar 

  • Mange, Arthur P., and Mange Elane Johansen (1990). Genetics: Human Aspects. Sunderland, MA: Sinauer Associates, Inc.

    Google Scholar 

  • Mead, Aroha Te Pareake (1995). Re: Papua New Guinea Patents. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9510/0350.html, accessed January 27, 2002.

  • Mead, Aroha Te Pareake (1996). Genealogy, Sacredness, and the Commodities Market. Cultural Survival Quarterly 20(2): 46–51.

    Google Scholar 

  • Molnar, Stephen (1998). Human Variation: Races, Types, and Ethnic Groups. Upper Saddle River, NJ: Prentice Hall.

    Google Scholar 

  • Mooney, Pat Roy (1993). Human Genome Diversity Project. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9311/0026.html, accessed January 27, 2002.

  • Mooney, Pat Roy, and Edward Hammond (1995). Re: Papua New Guinea Patents. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9510/0310.html, accessed January 27, 2002.

  • Mourant, A.E. (1983). Blood Relations: Blood Groups and Anthropology. Oxford: Oxford University Press.

    Google Scholar 

  • Neel, James V. (1984). The Real Human Populations. In Human Population Genetics: The Pittsburgh Symposium. A. Chakravarti, ed., pp. 249–273. New York: Van Nostrand Reinhold Co.

  • NIGMS (National Institute of General Medical Sciences) (1999). Report of the Workshop on Population-Based Samples for the NIGMS Human Genetic Cell Repository. http://www.nigms.nih.gov/news/reports/cellrepos.html, accessed May 22, 2002.

  • North American Regional Committee of the Human Genome Project (1997). Proposed Model Ethical Protocol for Collecting DNA Samples. Houston Law Review 33(5): 1431–1473.

    Google Scholar 

  • Price, Edward T. (1951). The Melungeons: A Mixed-Blood Strain of the Southern Appalachians. The Geographical Review 41(2): 256–271.

    Google Scholar 

  • Puckett, Anita (2001). The Melungeon Identity Movement and the Construction of Appalachian Whiteness. Journal of Linguistic Anthropology 11(1): 131–146.

    Article  Google Scholar 

  • Rabinow, Paul (1996). Making PCR: A Story of Biotechnology. Chicago: The University of Chicago Press.

    Google Scholar 

  • Reardon, Jenny (2001). The Human Genome Diversity Project: A Case Study in Coproduction. Social Studies of Science 31(3): 357–388.

    Google Scholar 

  • Resnick, David B. (1999). The Human Genome Diversity Project: Ethical Problems and Solutions. Politics and the Life Sciences 18(1): 15–23.

    PubMed  Google Scholar 

  • Rose, Hilary (1999). Reflections on the Human Genome Diversity Project. Politics and the Life Sciences 18(2): 328–330.

    PubMed  Google Scholar 

  • Rosenberg, Charles E. (1999). Meanings, Politics, and Medicine: On the Bioethical Enterprise and History. Daedalus 128(4): 27–46.

    PubMed  Google Scholar 

  • Rothman, David J. (1991). Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making. New York: Basic Books.

    Google Scholar 

  • Rural Advancement Foundation International a(RAFI) (1993). Patents, Indigenous People, and Human Genetic Diversity. Electronic document, http://www.rafi.org/article.asp?newsid=223, accessed February 4, 2002.

  • Rural Advancement Foundation International a(RAFI) (1994). The Patenting of Human Genetic Material. Electronic document, http://www.rafi.org/article.asp?newsid=218, accessed February 4, 2002.

  • South and Meso American Indian Information Center (SAIIC)(1993). Human Genome Diversity Project. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9310/0273.html, accessed January 6, 2002.

  • Stevens, M.L. Tina (2000). Bioethics in America: Origins and Cultural Politics. Baltimore, MD: The Johns Hopkins University Press.

    Google Scholar 

  • Sykes, Bryan (2001). The Seven Daughters of Eve. New York: W. W. Norton and Company.

    Google Scholar 

  • Taylor, Charles (1992). Multiculturalism and “The Politics of Recognition.” Princeton, NJ: Princeton University Press.

    Google Scholar 

  • Third World Network (1993). Call to Stop Human Genome Project. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9307/0036.html, accessed January 6, 2002.

  • Weale, Michael E., Deborah A. Weiss, Rolf F. Jager, Neil Bradman, and Mark G. Thomas (2002). Y Chromosome Evidence for Anglo-Saxon Mass Migration. Molecular Biology and Evolution 19(7): 1008–1021.

    PubMed  Google Scholar 

  • Weisz, George, ed. (1990). Social Science Perspectives on Medical Ethics. Dordrecht, the Netherlands: Kluwer Academic Publishers.

    Google Scholar 

  • Whitaker, Monica (1999). Melungeons, Others Seek Recognition as Indians. Electronic document, http://www.tennessean.com/sii/99/01/17/indian17.shtml, accessed July 8, 2002.

  • Wilmer, Franke (1993). The Indigenous Voice in World Politics: Since Time Immemorial. Newbury Park, CA: Sage Publications.

    Google Scholar 

  • Wilson, Darlenes (1988). A Response to Henige. Appalachian Journal 25(3): 286–296.

    Google Scholar 

  • Wilson, James F., Deborah A. Weiss, Martin Richards, Mark G. Thomas, Neil Bradman, and David B. Goldstein (2001). Genetic Evidence for Different Male and Female Roles During Cultural Transitions in the British Isles. Proceedings of the National Academy of Sciences 98(9): 5078–5083.

  • World Council of Indigenous Peoples (1994). WCIP Resolution on the HGDP. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9401/0315.html, accessed January 7, 2002.

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  1. Department of Anthropology, University of Wisconsin-Milwaukee, P.O. Box 413, Milwaukee, WI, 53201, USA

    Paul Brodwin

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Brodwin, P. “Bioethics in Action” and Human Population Genetics Research. Cult Med Psychiatry 29, 145–178 (2005). https://doi.org/10.1007/s11013-005-7423-2

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