Culture, Medicine and Psychiatry

, Volume 29, Issue 2, pp 145–178 | Cite as

“Bioethics in Action” and Human Population Genetics Research

Article

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.

Key Words

bioethics identity politics population genetics group consent Human Genome Diversity Project Melungeons 

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  1. 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
  2. Beale, Calvin L. (1957). American Triracial Isolates: Their Status and Pertinence to Genetic Research. Eugenics Quarterly 4(4): 187–196.Google Scholar
  3. 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
  4. Berry, Brewton (1963). Almost White. New York: Macmillan.Google Scholar
  5. 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.CrossRefPubMedGoogle Scholar
  6. Blu, Karen I. (1980). The Lumbee Problem: The Making of an American Indian People. New York: Cambridge University Press.Google Scholar
  7. Bosk, Charles L. (1992). All God's Mistakes: Genetic Counseling in a Pediatric Hospital. Chicago: The University of Chicago Press.Google Scholar
  8. Bosk, Charles L. (1999). Professional Ethicist Available: Logical, Secular, Friendly. Daedalus 128(4): 47–68.Google Scholar
  9. 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.PubMedGoogle Scholar
  10. 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.
  11. Brodwin, Paul (2002). Genetics, Identity, and the Anthropology of Essentialism. Anthropological Quarterly 75(2): 323–330.Google Scholar
  12. Callahan, Daniel (1999). The Social Sciences and the Task of Bioethics. Daedalus 128(4): 275–294.PubMedGoogle Scholar
  13. Cavalli-Sforza, Luigi L., P. Menozzi, and A. Piazza (1994). The History and Geography of Human Genes. Princeton, NJ: Princeton University Press.Google Scholar
  14. 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.PubMedGoogle Scholar
  15. Cavender, Anthony P. (1981). The Melungeons of Upper East Tennessee: Persisting Social Identity. Tennessee Anthropologist 6(1): 7–36.Google Scholar
  16. Cayuqueo, Nilo (1993). HGD Project, SAIIC Response. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9311/0069.html, accessed January 26, 2002.
  17. Committee on Human Genome Diversity, National Research Council (1997). Evaluating Human Genetic Diversity. Washington, DC: The National Academies Press.Google Scholar
  18. 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
  19. 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
  20. 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
  21. DeVries, Raymond, and Janardan Subedi, eds. (1998). Bioethics and Society: Constructing the Ethical Enterprise. Upper Saddle River, NJ: Prentice Hall.Google Scholar
  22. Elder, Pat Spurlock (1999). Melungeons: Examining an Appalachian Legend. Blountville, TN: Continuity Press.Google Scholar
  23. Elliott, Carl, and Paul Brodwin (2002). Identity and Genetic Ancestry Tracing. British Medical Journal 325: 1469–1471.PubMedGoogle Scholar
  24. Evans, John Hyde (2002). Playing God? Human Genetic Engineering and the Rationalization of Public Bioethical Debate. Chicago: University of Chicago Press.Google Scholar
  25. Everett, C.S. (1999). Melungeon History and Myth. Appalachian Journal 26(4): 358–409.Google Scholar
  26. 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.CrossRefPubMedGoogle Scholar
  27. Fox, Daniel M. (1993). View the Second. Hastings Center Report 23(6): S12–S13.Google Scholar
  28. Gannett, Lisa (2001). Racism and Human Genome Diversity Research: The Ethical Limits of “Population Thinking.” Philosophy of Science 68(3): S479–S492.CrossRefGoogle Scholar
  29. 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
  30. Gillespie, John H. (1998). Population Genetics: A Concise Guide. Baltimore, MD: The Johns Hopkins University Press.Google Scholar
  31. Greely, Henry (1994). Status of the HGD Project. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9402/0020.html, accessed January 27, 2002.
  32. 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.
  33. 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
  34. Greely, Henry (1999). The Overlooked Ethics of the Human Genome Diversity Project. Politics and the Life Sciences 18(2): 297–299.PubMedGoogle Scholar
  35. Greely, Henry (2001). Human Genome Diversity: What About the Other Human Genome Project? Nature Reviews Genetics 2(3): 222–227.CrossRefPubMedGoogle Scholar
  36. Harry, Debra, and Jonathan Marks (1999). Human Population Genetics versus the HGDP. Politics and the Life Sciences 18(2): 303–305.PubMedGoogle Scholar
  37. Hartl, Daniel L., and Andrew G. Clark (1997). Principles of Population Genetics. Sunderland, MA: Sinauer Associates, Inc.Google Scholar
  38. Henige, David (1984). Origin Traditions of American Racial Isolates: A Case of Something Borrowed. Appalachian Journal 1(3): 201–213.Google Scholar
  39. Henige, David (1998). The Melungeons Become a Race. Appalachian Journal 25(3): 270–286.Google Scholar
  40. 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
  41. 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.
  42. 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
  43. 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
  44. Jacquard, Albert (1974). The Genetic Structure of Populations. New York: Springer-Verlag.Google Scholar
  45. Jonsen, Albert R. (1998). The Birth of Bioethics. New York: Oxford University Press.Google Scholar
  46. Jonsen, Albert R. (2001). Beating Up Bioethics. Hastings Center Report 31(5): 40–45.Google Scholar
  47. 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.PubMedGoogle Scholar
  48. Kennedy, N. Brent (1997). The Melungeons: The Resurrection of a Proud People. Macon, GA: Mercer University Press.Google Scholar
  49. 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.PubMedGoogle Scholar
  50. 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).Google Scholar
  51. Latour, Bruno (1987). Science in Action. Cambridge, MA: Harvard University Press.Google Scholar
  52. Lewontin, R.C. (1985). Population Genetics. Annual Review of Genetics 19: 81–102.CrossRefPubMedGoogle Scholar
  53. Lock, Margaret (1994). Interrogating the Human Diversity Genome Project. Social Science and Medicine 39(5): 603–606.CrossRefPubMedGoogle Scholar
  54. Mange, Arthur P., and Mange Elane Johansen (1990). Genetics: Human Aspects. Sunderland, MA: Sinauer Associates, Inc.Google Scholar
  55. 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.
  56. Mead, Aroha Te Pareake (1996). Genealogy, Sacredness, and the Commodities Market. Cultural Survival Quarterly 20(2): 46–51.Google Scholar
  57. Molnar, Stephen (1998). Human Variation: Races, Types, and Ethnic Groups. Upper Saddle River, NJ: Prentice Hall.Google Scholar
  58. Mooney, Pat Roy (1993). Human Genome Diversity Project. Electronic document, http://www.nativenet.uthscsa.edu/archive/nl/9311/0026.html, accessed January 27, 2002.
  59. 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.
  60. Mourant, A.E. (1983). Blood Relations: Blood Groups and Anthropology. Oxford: Oxford University Press.Google Scholar
  61. 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.Google Scholar
  62. 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.
  63. 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
  64. Price, Edward T. (1951). The Melungeons: A Mixed-Blood Strain of the Southern Appalachians. The Geographical Review 41(2): 256–271.Google Scholar
  65. Puckett, Anita (2001). The Melungeon Identity Movement and the Construction of Appalachian Whiteness. Journal of Linguistic Anthropology 11(1): 131–146.CrossRefGoogle Scholar
  66. Rabinow, Paul (1996). Making PCR: A Story of Biotechnology. Chicago: The University of Chicago Press.Google Scholar
  67. Reardon, Jenny (2001). The Human Genome Diversity Project: A Case Study in Coproduction. Social Studies of Science 31(3): 357–388.Google Scholar
  68. Resnick, David B. (1999). The Human Genome Diversity Project: Ethical Problems and Solutions. Politics and the Life Sciences 18(1): 15–23.PubMedGoogle Scholar
  69. Rose, Hilary (1999). Reflections on the Human Genome Diversity Project. Politics and the Life Sciences 18(2): 328–330.PubMedGoogle Scholar
  70. Rosenberg, Charles E. (1999). Meanings, Politics, and Medicine: On the Bioethical Enterprise and History. Daedalus 128(4): 27–46.PubMedGoogle Scholar
  71. 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
  72. 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.
  73. 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.
  74. 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.
  75. Stevens, M.L. Tina (2000). Bioethics in America: Origins and Cultural Politics. Baltimore, MD: The Johns Hopkins University Press.Google Scholar
  76. Sykes, Bryan (2001). The Seven Daughters of Eve. New York: W. W. Norton and Company.Google Scholar
  77. Taylor, Charles (1992). Multiculturalism and “The Politics of Recognition.” Princeton, NJ: Princeton University Press.Google Scholar
  78. 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.
  79. 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.PubMedGoogle Scholar
  80. Weisz, George, ed. (1990). Social Science Perspectives on Medical Ethics. Dordrecht, the Netherlands: Kluwer Academic Publishers.Google Scholar
  81. 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.
  82. Wilmer, Franke (1993). The Indigenous Voice in World Politics: Since Time Immemorial. Newbury Park, CA: Sage Publications.Google Scholar
  83. Wilson, Darlenes (1988). A Response to Henige. Appalachian Journal 25(3): 286–296.Google Scholar
  84. 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.Google Scholar
  85. 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.

Copyright information

© Springer Science + Business Media, Inc. 2005

Authors and Affiliations

  1. 1.Department of AnthropologyUniversity of Wisconsin-MilwaukeeMilwaukeeUSA

Personalised recommendations