The human genome diversity project: A case study in coproduction

Social Studies of Science

Volumn 31, Issue 3, 2001, Pages 357-388

  Reardon, Jenny ^a  

^a HARVARD UNIVERSITY   (United States)

Author keywords

Consent; Culture; Genetics; Identity; Race; Rights

Indexed keywords

EID: 0035536137     PISSN: 03063127     EISSN: None     Source Type: Journal    
DOI: 10.1177/030631201031003002     Document Type: Article

References (105)

1. The Human Genome Diversity Project: A Case Study in Coproduction Jenny Reardon ABSTRACT Since its inception in 1991, the design of the proposed Human Genome Diversity Project has shifted several times. However, one unchanging and central Project goal is to collect blood and other human tissue samples from 'genetically distinct' indigenous groups around the globe. This goal has proved highly controversial, and the Diversity Project has thus far failed to move beyond the planning stage. In this paper I argue that the reason for the Project's inconclusive and open-ended character is that project organizers are attempting to stabilize and control a highly contested terrain structured by emotionally and politically charged discourses. These discourses inextricably entangle scientific and social issues -including North/South relations, colonization, intellectual property rights and the origins of human diversity. To move forward, as the paper demonstrates, project organizers would have to negotiate these entanglements, and 'coproduce' a natural and social order that could accommodate their project. The paper explains why this process of coproduction proved to be so labour-intensive in the case of the Diversity Project, and why the Project's main responses to its critics to date have failed to provide the tools needed to do this work. Keywords consent, culture, genetics, identity, race, rights
2. Luca Cavalli-Sforza, Allan C. Wilson, Charles R. Cantor, Robert M. Cook-Deegan and Mary-Claire King, 'Call for a Worldwide Survey of Human Genetic Diversity: A Vanishing Opportunity for the Human Genome Project', Genomics, Vol. 11, No. 2 (October 1991), 490-91. This letter describes the original project proposal. The goal of the Project later changed to include collection and preservation of a 'representative' sample of human genomes. There are, of course, many questions about what the term 'representative' should and will mean.
3. The term 'Human Genome Diversity Project' is highly contested and filled with logics and politics that could and should be explored. In this paper, however, I use the term to refer to the definition provided by the mostly American organizers of the Project who first tried to generate US support for a global survey of human genetic diversity. The Diversity Project has since been multiply defined in regions across the globe. Some of these definitions are provided by those who resist the Project. Others are provided by the Project's regional committees, which now exist in North America, Europe, Africa, South America and China. Some would argue that the Diversity Project is moving forward in some of these other regions of the globe.
4. At the time I was preparing this paper for publication, Diversity Project Regional Committees in China and SW Asia had begun sampling: see Henry T. Greely, 'Human Genome Diversity: What about the Other Human Genome Project?', Genetics (March 2001), 222-270.
5. Here 'failed' refers to the inability of Diversity Project organizers to design a definable, fundable global Project. Some might also view this as a sign of the 'success' of political and ethical mechanisms to prevent projects from moving forward without adequate social, political and ethical practices.
6. The Diversity Project has also been the subject of inconclusive national and international reviews. In October 1995, the UNESCO's International Bioethics Committee reviewed the HGDP. Nature reported an unfavourable review: see Declan Butler, 'Genetic Diversity Project Fails to Impress International Ethics Panel', Nature, Vol. 377 (5 October 1995), 373. In my interviews, Diversity Project leaders contested this interpretation. In October 1997, the US National Research Council released its long-anticipated review of the HGDP, Evaluating Human Genome Diversity (Washington, DC: National Academy Press, 1997). Again, an inconclusive interpretation of the review resulted. Science reported support for the Project: see Elizabeth Pennisi, 'NRC OKs Long-Delayed Survey of Human Genome Diversity', Science, Vol. 278 (24 October 1997), 568. Nature reported a negative review: see Collin Macllwain, 'Diversity Project "does not merit Federal Funding" ', Nature, Vol. 389 (23 October 1997), 774.
7. The Diversity Project has also been the subject of inconclusive national and international reviews. In October 1995, the UNESCO's International Bioethics Committee reviewed the HGDP. Nature reported an unfavourable review: see Declan Butler, 'Genetic Diversity Project Fails to Impress International Ethics Panel', Nature, Vol. 377 (5 October 1995), 373. In my interviews, Diversity Project leaders contested this interpretation. In October 1997, the US National Research Council released its long-anticipated review of the HGDP, Evaluating Human Genome Diversity (Washington, DC: National Academy Press, 1997). Again, an inconclusive interpretation of the review resulted. Science reported support for the Project: see Elizabeth Pennisi, 'NRC OKs Long-Delayed Survey of Human Genome Diversity', Science, Vol. 278 (24 October 1997), 568. Nature reported a negative review: see Collin Macllwain, 'Diversity Project "does not merit Federal Funding" ', Nature, Vol. 389 (23 October 1997), 774.
8. The Diversity Project has also been the subject of inconclusive national and international reviews. In October 1995, the UNESCO's International Bioethics Committee reviewed the HGDP. Nature reported an unfavourable review: see Declan Butler, 'Genetic Diversity Project Fails to Impress International Ethics Panel', Nature, Vol. 377 (5 October 1995), 373. In my interviews, Diversity Project leaders contested this interpretation. In October 1997, the US National Research Council released its long-anticipated review of the HGDP, Evaluating Human Genome Diversity (Washington, DC: National Academy Press, 1997). Again, an inconclusive interpretation of the review resulted. Science reported support for the Project: see Elizabeth Pennisi, 'NRC OKs Long-Delayed Survey of Human Genome Diversity', Science, Vol. 278 (24 October 1997), 568. Nature reported a negative review: see Collin Macllwain, 'Diversity Project "does not merit Federal Funding" ', Nature, Vol. 389 (23 October 1997), 774.
9. 'Indigenous Peoples Opposition to the HGDP': (updated 7 August 1997, accessed October 1997).
10. These are just two of several declarations issued by indigenous and Native groups since 1993 that have denounced the Project - accusing it of everything from designing 'ethnic bombs', to racism, to 'biocolonialism': see ibid.
11. Deutsche Press-Agentur, 'Labs that produced Pakistan's atomic bomb also researching genetics' (10 June 1998).
12. For examples of works that exemplify this framework, see: Yaron Ezrahi, The Descent of Icarus (Cambridge, MA: Harvard University Press, 1990); Sheila Jasanoff, Gerald E. Markle, James C. Peterson and Trevor Pinch (eds), Handbook of Science and Technology Studies (Thousand Oaks, CA: 4S/Sage, 1995); Steven Shapin and Simon Schaffer, Leviathan and the Air-Pump: Hobbes, Boyle, and the Experimental Life (Princeton, NJ: Princeton University Press, 1985); Brian Wynne, 'Misunderstood Misunderstandings: Social Identities and Public Uptake of Science', in Alan Irwin and Brian Wynne (eds), Misunderstanding Science? The Public Reconstruction of Science and Technology (Cambridge: Cambridge University Press, 1996), 19-46; Sheila Jasanoff (ed.), States of Knowledge: Science, Power and Political Culture (forthcoming).
13. For examples of works that exemplify this framework, see: Yaron Ezrahi, The Descent of Icarus (Cambridge, MA: Harvard University Press, 1990); Sheila Jasanoff, Gerald E. Markle, James C. Peterson and Trevor Pinch (eds), Handbook of Science and Technology Studies (Thousand Oaks, CA: 4S/Sage, 1995); Steven Shapin and Simon Schaffer, Leviathan and the Air-Pump: Hobbes, Boyle, and the Experimental Life (Princeton, NJ: Princeton University Press, 1985); Brian Wynne, 'Misunderstood Misunderstandings: Social Identities and Public Uptake of Science', in Alan Irwin and Brian Wynne (eds), Misunderstanding Science? The Public Reconstruction of Science and Technology (Cambridge: Cambridge University Press, 1996), 19-46; Sheila Jasanoff (ed.), States of Knowledge: Science, Power and Political Culture (forthcoming).
14. For examples of works that exemplify this framework, see: Yaron Ezrahi, The Descent of Icarus (Cambridge, MA: Harvard University Press, 1990); Sheila Jasanoff, Gerald E. Markle, James C. Peterson and Trevor Pinch (eds), Handbook of Science and Technology Studies (Thousand Oaks, CA: 4S/Sage, 1995); Steven Shapin and Simon Schaffer, Leviathan and the Air-Pump: Hobbes, Boyle, and the Experimental Life (Princeton, NJ: Princeton University Press, 1985); Brian Wynne, 'Misunderstood Misunderstandings: Social Identities and Public Uptake of Science', in Alan Irwin and Brian Wynne (eds), Misunderstanding Science? The Public Reconstruction of Science and Technology (Cambridge: Cambridge University Press, 1996), 19-46; Sheila Jasanoff (ed.), States of Knowledge: Science, Power and Political Culture (forthcoming).
15. For examples of works that exemplify this framework, see: Yaron Ezrahi, The Descent of Icarus (Cambridge, MA: Harvard University Press, 1990); Sheila Jasanoff, Gerald E. Markle, James C. Peterson and Trevor Pinch (eds), Handbook of Science and Technology Studies (Thousand Oaks, CA: 4S/Sage, 1995); Steven Shapin and Simon Schaffer, Leviathan and the Air-Pump: Hobbes, Boyle, and the Experimental Life (Princeton, NJ: Princeton University Press, 1985); Brian Wynne, 'Misunderstood Misunderstandings: Social Identities and Public Uptake of Science', in Alan Irwin and Brian Wynne (eds), Misunderstanding Science? The Public Reconstruction of Science and Technology (Cambridge: Cambridge University Press, 1996), 19-46; Sheila Jasanoff (ed.), States of Knowledge: Science, Power and Political Culture (forthcoming).
16. For examples of works that exemplify this framework, see: Yaron Ezrahi, The Descent of Icarus (Cambridge, MA: Harvard University Press, 1990); Sheila Jasanoff, Gerald E. Markle, James C. Peterson and Trevor Pinch (eds), Handbook of Science and Technology Studies (Thousand Oaks, CA: 4S/Sage, 1995); Steven Shapin and Simon Schaffer, Leviathan and the Air-Pump: Hobbes, Boyle, and the Experimental Life (Princeton, NJ: Princeton University Press, 1985); Brian Wynne, 'Misunderstood Misunderstandings: Social Identities and Public Uptake of Science', in Alan Irwin and Brian Wynne (eds), Misunderstanding Science? The Public Reconstruction of Science and Technology (Cambridge: Cambridge University Press, 1996), 19-46; Sheila Jasanoff (ed.), States of Knowledge: Science, Power and Political Culture (forthcoming).
17. I place these categories here in (so-called 'sneer') quotes because part of the goal of the coproduction project is to demonstrate the ways in which these categories get made, and how the boundary between them is constructed in particular institutional, political and cultural contexts. From here on in the paper, all uses of the terms 'science' and 'society' should be understood as if they were in quotes.
18. The Genetics of Human Populations, a book Luca Cavalli-Sforza coauthored with Walter Bodmer (the President of HUGO at the time of the HGDP proposal) has been the standard textbook of human population genetics since the 1970s: Luca Cavalli-Sforza and Walter Bodmer, The Genetics of Human Populations (New York: Dover Publications, 1971 [1999]).
19. Luca Cavalli-Sforza, 'Genes, Peoples and Languages', Scientific American, Vol. 265, No. 5 (November 1991), 72-78.
20. Cavalli-Sforza et al., op. cit. note 1.
21. 'Discourse' here is defined as a set of rules and practices that differentiate objects, and gain material institutional support. I also hold discourse to define the field of possibilities - what can and cannot be contemplated - and thus an important constitutive element of power. This definition is Foucaultian in inspiration. For a full explanation of this meaning of the term as I use it, see Michel Foucault, The Archaeology of Knowledge (New York: Pantheon Books, 1972), 79-105.
22. For a detailed account of the emergence of the Human Genome Project, see Robert Cook-Deegan, The Gene Wars (New York: W.W. Norton, 1994).
23. Boyce Rensberger, 'Tracking the Parade of Mankind via Clues in the Genetic Code', The Washington Post (22 February 1993), A3.
24. William Provine, 'Genetics and Race', American Zoologist, Vol. 26, No. 3 (1986), 857-87.
25. Theodosius Dobzhansky, Genetics and the Origin of Species, 3rd edn (New York: Columbia University Press, 1937 [1951]), 138.
26. Ibid., 18.
27. Upon examination of these UNESCO Statements on race, further differences among scientists appear. Although all agreed on this point about racism, a similar consensus about race did not emerge. In particular, physical anthropologists and geneticists objected to the definition of race offered in the First Statement, prompting UNESCO to commission the drafting of a Second Statement on Race one year after the publication of the first. For an account of these Statements, see UNESCO, The Race Concept: Results of an Inquiry (Paris: UNESCO, 1952). Our ability to understand the current debates about the meaning of race and human differences would greatly benefit from a careful and detailed exploration of these differences. My own work in this area has been greatly aided by participation in the Joint MIT/Harvard Workshop on Race in the Histories of Science, Medicine and Technology, held monthly from the Fall of 1996 to the Spring of 2001.
28. See, for example, Nancy Stepan, The Idea of Race in Science (Hamden, CT: Archon Books, 1982); Elazar Barkan, The Retreat of Scientific Racism (Cambridge: Cambridge University Press, 1992). In recent years, however, a handful of historians and cultural critics of biology have begun to demonstrate the ways in which scientists' claims that 'biologically speaking, there is no such thing as "race" ' are not matched by their practices. These scholars point to medical researchers and physical anthropologists, who routinely use 'race' as an epidemiological and biomedical category, as well as to the ways in which new scientific categories, such as 'population', carry forward old racial practices. Their findings challenge the prevailing view that the history of race and science has ended, a view propounded by historians of science like Stepan and Barkan. See, for example, Evelynn Hammonds, 'New Technologies of Race', in Jennifer Terry and Melodie Calvert (eds), Processed Lives: Gender and Technology in Everyday Life (New York: Routledge, 1997), 107-21; Donna Haraway, 'Universal Donors in a Vampire Culture: It's All in the Family. Biological Kinship Categories in the Twentieth-Century United States', in Modest_Witness@Second_Millennium.FemaleMan©_Meets_Oncomousea (NewYork: Routledge, 1997), Chapter 6, 213-65.
29. See, for example, Nancy Stepan, The Idea of Race in Science (Hamden, CT: Archon Books, 1982); Elazar Barkan, The Retreat of Scientific Racism (Cambridge: Cambridge University Press, 1992). In recent years, however, a handful of historians and cultural critics of biology have begun to demonstrate the ways in which scientists' claims that 'biologically speaking, there is no such thing as "race" ' are not matched by their practices. These scholars point to medical researchers and physical anthropologists, who routinely use 'race' as an epidemiological and biomedical category, as well as to the ways in which new scientific categories, such as 'population', carry forward old racial practices. Their findings challenge the prevailing view that the history of race and science has ended, a view propounded by historians of science like Stepan and Barkan. See, for example, Evelynn Hammonds, 'New Technologies of Race', in Jennifer Terry and Melodie Calvert (eds), Processed Lives: Gender and Technology in Everyday Life (New York: Routledge, 1997), 107-21; Donna Haraway, 'Universal Donors in a Vampire Culture: It's All in the Family. Biological Kinship Categories in the Twentieth-Century United States', in Modest_Witness@Second_Millennium.FemaleMan©_Meets_Oncomousea (NewYork: Routledge, 1997), Chapter 6, 213-65.
30. See, for example, Nancy Stepan, The Idea of Race in Science (Hamden, CT: Archon Books, 1982); Elazar Barkan, The Retreat of Scientific Racism (Cambridge: Cambridge University Press, 1992). In recent years, however, a handful of historians and cultural critics of biology have begun to demonstrate the ways in which scientists' claims that 'biologically speaking, there is no such thing as "race" ' are not matched by their practices. These scholars point to medical researchers and physical anthropologists, who routinely use 'race' as an epidemiological and biomedical category, as well as to the ways in which new scientific categories, such as 'population', carry forward old racial practices. Their findings challenge the prevailing view that the history of race and science has ended, a view propounded by historians of science like Stepan and Barkan. See, for example, Evelynn Hammonds, 'New Technologies of Race', in Jennifer Terry and Melodie Calvert (eds), Processed Lives: Gender and Technology in Everyday Life (New York: Routledge, 1997), 107-21; Donna Haraway, 'Universal Donors in a Vampire Culture: It's All in the Family. Biological Kinship Categories in the Twentieth-Century United States', in Modest_Witness@Second_Millennium.FemaleMan©_Meets_Oncomousea (NewYork: Routledge, 1997), Chapter 6, 213-65.
31. See, for example, Nancy Stepan, The Idea of Race in Science (Hamden, CT: Archon Books, 1982); Elazar Barkan, The Retreat of Scientific Racism (Cambridge: Cambridge University Press, 1992). In recent years, however, a handful of historians and cultural critics of biology have begun to demonstrate the ways in which scientists' claims that 'biologically speaking, there is no such thing as "race" ' are not matched by their practices. These scholars point to medical researchers and physical anthropologists, who routinely use 'race' as an epidemiological and biomedical category, as well as to the ways in which new scientific categories, such as 'population', carry forward old racial practices. Their findings challenge the prevailing view that the history of race and science has ended, a view propounded by historians of science like Stepan and Barkan. See, for example, Evelynn Hammonds, 'New Technologies of Race', in Jennifer Terry and Melodie Calvert (eds), Processed Lives: Gender and Technology in Everyday Life (New York: Routledge, 1997), 107-21; Donna Haraway, 'Universal Donors in a Vampire Culture: It's All in the Family. Biological Kinship Categories in the Twentieth-Century United States', in Modest_Witness@Second_Millennium.FemaleMan©_Meets_Oncomousea (NewYork: Routledge, 1997), Chapter 6, 213-65.
32. However, 'race' continued to be used without critique in medical and public health research. Only in recent years has the use of 'race' by doctors and public health workers come under scrutiny. See, for example, Harold Freeman, 'The Meaning of Race in Science - Considerations for Cancer Research', Cancer, Vol. 82 (1 January 1998), 219-25.
33. For a further exploration of the rise of 'population' in genetic discourse, see Haraway, op. cit. note 21 (Chapter 6).
34. Molecular anthropologists use molecular data to study human diversity and history.
35. Human Genome Diversity Project, Human Genome Diversity Workshop 1 (Stanford, CA: Stanford University, 1992), 5.
36. Leslie Roberts, 'How to Sample the World's Genetic Diversity', Science, Vol. 257 (28 August 1992), 1204-05, at 1204.
37. For a detailed account of this logic, see Cavalli-Sforza's explanation of the scientific usefulness of 'tribes' as opposed to inhabitants of 'metropolitan societies': op. cit. note 12, 72.
38. Allan Wilson died of leukemia in August 1991. Mark Stoneking, Anna DiRienzo and Svante Paabo, all colleagues of Wilson's, attended the Stanford meeting in July 1992.
39. Rebecca Cann, Mark Stoneking and Allan C. Wilson, 'Mitochondrial DNA and Human Evolution', Nature, Vol. 325 (1 January 1987), 31-36.
40. Quotations from Roberts, op. cit. note 25.
41. The US National Research Council later discussed the strengths and weaknesses of these approaches in its 1997 report, Evaluating Human Genetic Diversity, op. cit. note 5.
42. Roberts, op. cit. note 25, 1205.
43. HGDP, op. cit. note 24, 4.
44. Roberts, op. cit. note 25.
45. HGDP, op. cit. note 24, 3.
46. Or, as the Project's Summary document states the problem: 'It is simply not feasible to study all populations in detail within the HGD Project and representative populations therefore need to be selected': Human Genome Organization, The Human Genome Diversity (HGD) Project (Sardinia: HUGO, 1993), 12.
47. The term 'culturalist' is that of the organizer.
48. It should be noted that the distinction here between 'biological' and 'cultural' is not mine, but that of Diversity Project organizers.
49. Quotations from Leslie Roberts, 'Anthropologists Climb (Gingerly) on Board', Science, Vol. 258 (20 November 1992), 1300-01, at 1301.
50. The National Research Council's 1997 report cites this lack of consensus as the reason why it could not review the Project: NRC, op. cit. note 5, viii.
51. Donna Haraway, Primate Visions (New York: Routledge, 1989), 198.
52. United Nations, Universal Declaration of Human Rights (Washington, DC: US Department of State, 1949 [1948]).
53. Stephen A. Holmes, 'People Can Claim One or More Races on Federal Forms', New York Times (30 October 1997), A1.
54. Executive Order 10925: 1961.
55. See, for example, DNA Learning Center, 'Extending our Expertise to Minority and Disadvantaged Settings', in DNA Learning Center Annual Report (Cold Spring Harbor, NY: DNA LC, CS Harbor Laboratory, 1992), 376-78; Herbert W. Nickens, 'Minority Health Research Issues', Science, Technology, & Human Values, Vol. 18, No. 4 (Autumn 1993), 506-10.
56. See, for example, DNA Learning Center, 'Extending our Expertise to Minority and Disadvantaged Settings', in DNA Learning Center Annual Report (Cold Spring Harbor, NY: DNA LC, CS Harbor Laboratory, 1992), 376-78; Herbert W. Nickens, 'Minority Health Research Issues', Science, Technology, & Human Values, Vol. 18, No. 4 (Autumn 1993), 506-10.
57. See, for example: M.R. Natowicz, 'Genetic Discrimination and Law', American Journal of Human Genetics, Vol. 50 (1992), 465-75; Paul R. Billings, 'Discrimination as a Consequence of Genetic Testing', ibid., 476-82; Eric Juengst, 'Lineage, Land Tenure, and Demic Discrimination: The Social Risks of the Human Genome Diversity Project' (paper presented at a Public Symposium on 'Genetics and the Human Genome Project: Where Scientific Cultures and Public Cultures Meet', Stanford University, CA, 3-4 November 1995).
58. See, for example: M.R. Natowicz, 'Genetic Discrimination and Law', American Journal of Human Genetics, Vol. 50 (1992), 465-75; Paul R. Billings, 'Discrimination as a Consequence of Genetic Testing', ibid., 476-82; Eric Juengst, 'Lineage, Land Tenure, and Demic Discrimination: The Social Risks of the Human Genome Diversity Project' (paper presented at a Public Symposium on 'Genetics and the Human Genome Project: Where Scientific Cultures and Public Cultures Meet', Stanford University, CA, 3-4 November 1995).
59. See, for example: M.R. Natowicz, 'Genetic Discrimination and Law', American Journal of Human Genetics, Vol. 50 (1992), 465-75; Paul R. Billings, 'Discrimination as a Consequence of Genetic Testing', ibid., 476-82; Eric Juengst, 'Lineage, Land Tenure, and Demic Discrimination: The Social Risks of the Human Genome Diversity Project' (paper presented at a Public Symposium on 'Genetics and the Human Genome Project: Where Scientific Cultures and Public Cultures Meet', Stanford University, CA, 3-4 November 1995).
60. M.A. Jaimes-Guerrero, 'Eugenics Coding and American Racisms: Focus on the Human Genome Diversity Project as "The Great Spiritual Ripoff" ' (paper presented to the First North American Conference on Genetics and Native Peoples, Poison, MT, 11-12 October 1998).
61. Anna Marie Smith, New Rights Discourse on Race and Sexuality: Britain, 1968-1990 (Cambridge: Cambridge University Press, 1994), esp. 5 & 9-10; see also Michael Omi and Howard Winant, Racial Formations in the United States (London: Routledge, 1994), 39-47, and Peggy Pascoe, 'Miscegenation Law, Court Cases, and Ideologies of "Race" in Twentieth-Century America', Journal of American History, Vol. 83, No. 1 (June 1996), 44-69, esp. 67-68.
62. Anna Marie Smith, New Rights Discourse on Race and Sexuality: Britain, 1968-1990 (Cambridge: Cambridge University Press, 1994), esp. 5 & 9-10; see also Michael Omi and Howard Winant, Racial Formations in the United States (London: Routledge, 1994), 39-47, and Peggy Pascoe, 'Miscegenation Law, Court Cases, and Ideologies of "Race" in Twentieth-Century America', Journal of American History, Vol. 83, No. 1 (June 1996), 44-69, esp. 67-68.
63. Anna Marie Smith, New Rights Discourse on Race and Sexuality: Britain, 1968-1990 (Cambridge: Cambridge University Press, 1994), esp. 5 & 9-10; see also Michael Omi and Howard Winant, Racial Formations in the United States (London: Routledge, 1994), 39-47, and Peggy Pascoe, 'Miscegenation Law, Court Cases, and Ideologies of "Race" in Twentieth-Century America', Journal of American History, Vol. 83, No. 1 (June 1996), 44-69, esp. 67-68.
64. Vine Deloria, American Indian Policy in the Twentieth Century (Norman: University of Oklahoma Press, 1985); Cherokee Nation v. Georgia (1831); Worcester v. Georgia (1832).
65. Aroha Mead, 'Genealogy, Sacredness and the Commodities Market', Cultural Survival Quarterly, Vol. 20, No. 2 (Summer 1996), 46-51; Laurie Anne Whitt, 'Biocolonialism and the Commodification of Knowledge' (paper presented to the First North American Conference on Genetics and Native Peoples, Poison, MT, 11-12 October 1998).
66. Aroha Mead, 'Genealogy, Sacredness and the Commodities Market', Cultural Survival Quarterly, Vol. 20, No. 2 (Summer 1996), 46-51; Laurie Anne Whitt, 'Biocolonialism and the Commodification of Knowledge' (paper presented to the First North American Conference on Genetics and Native Peoples, Poison, MT, 11-12 October 1998).
67. James Kloppenburg, First the Seed: The Political Economy of Plant Biotechnology (Cambridge: Cambridge University Press, 1988); Vandana Shiva and the World Rainforest Movement, Biodiversity: Social and Ecological Perspectives (London: Zed Books, 1992).
68. James Kloppenburg, First the Seed: The Political Economy of Plant Biotechnology (Cambridge: Cambridge University Press, 1988); Vandana Shiva and the World Rainforest Movement, Biodiversity: Social and Ecological Perspectives (London: Zed Books, 1992).
69. Corinne P. Hayden, 'A Biodiversity Sampler for the Millennium', in Sarah Franklin and Helen Ragoné (eds), Reproducing Reproduction: Kinship, Power, and Technological Innovation (Philadelphia: University of Pennsylvania Press, 1998), 173-206; Rural Advancement Foundation International (RAFI), 'Patents, Indigenous Peoples, and Human Genetic Diversity', RAFI Communiqué (Ottawa: May 1993); Debra Harry, 'Patenting of Life and Its Implications for Indigenous Peoples', Information About Intellectual Property Rights, Vol. 7 (1995), 1-2.
70. Corinne P. Hayden, 'A Biodiversity Sampler for the Millennium', in Sarah Franklin and Helen Ragoné (eds), Reproducing Reproduction: Kinship, Power, and Technological Innovation (Philadelphia: University of Pennsylvania Press, 1998), 173-206; Rural Advancement Foundation International (RAFI), 'Patents, Indigenous Peoples, and Human Genetic Diversity', RAFI Communiqué (Ottawa: May 1993); Debra Harry, 'Patenting of Life and Its Implications for Indigenous Peoples', Information About Intellectual Property Rights, Vol. 7 (1995), 1-2.
71. Corinne P. Hayden, 'A Biodiversity Sampler for the Millennium', in Sarah Franklin and Helen Ragoné (eds), Reproducing Reproduction: Kinship, Power, and Technological Innovation (Philadelphia: University of Pennsylvania Press, 1998), 173-206; Rural Advancement Foundation International (RAFI), 'Patents, Indigenous Peoples, and Human Genetic Diversity', RAFI Communiqué (Ottawa: May 1993); Debra Harry, 'Patenting of Life and Its Implications for Indigenous Peoples', Information About Intellectual Property Rights, Vol. 7 (1995), 1-2.
72. Cavalli-Sforza et al., op. cit. note 1, 490.
73. HGDP, op. cit. note 24, 8.
74. The exact causes of the concern remain unclear. Some cite a mishandled interchange between an NIH official and Jeremy Rifkin - a noted science critic, and a particular opponent of biotechnology - about the Diversity Project. Others argue that the NIH's experiences with the Human Genome Project had generated sensitivity to ethical problems raised by human genome research.
75. For the minutes of this meeting, see Human Genome Diversity Project, 'Summary of Planning Workshop 3(B): Ethical and Human Rights Implications' (16-18 February, 1993).
76. Pat Mooney, 'The Parts of Life: Agricultural Biodiversity, Indigenous Knowledge, and the Role of the Third System', development dialogue, Vol. 1-2 (1996), esp. 21-30.
77. RAFI, op. cit. note 51, 4.
78. As part of an effort to recognize indigenous peoples in the midst of quincentennial celebrations in the early 1990s, later in 1993 the United Nations announced the beginning of the Decade of Indigenous Peoples (General Assembly resolution 48/163 of 21 December 1993).
79. These questions are from a letter from Pat Mooney to Henry Greely (2 June 1993).
80. This section is informed by Native-L: (accessed 6 October 1999). 'Human Genome Diversity Project -Organizers' Response' was past on 8 July 1993.
81. An organizational structure for the Project emerged after the Sardinia meeting, where, according to the HUGO report, 'participants, who represented all the regions of the world and included many of those who would be most actively involved with the project', discussed a proposal outlining the Project's structure, and approved it 'without dissent': see HUGO, op. cit. note 35, 36. Sir Walter Bodmer, then HUGO president, presented the proposal to the HUGO Council in November 1993. The structure was approved by the Council at its meeting in January 1994.
82. This group included Henry T. Greely (Stanford law professor), Ken Kidd (Yale population geneticist), Kenneth M. Weiss (Penn State molecular anthropologist), Mark Weiss (physical anthropologist), Catherine Twinn (Native American activist and lawyer) and John Moore (physical anthropologist).
83. NAmC, 'Proposed Model Ethical Protocol for Collecting DNA Samples - Draft' (October 1995), 22. This draft was later published with very few changes in the Houston Law Review. North American Regional Committee of the Human Genome Diversity Project, 'Proposed Model Ethical Protocol for Collecting DNA Samples', Houston Law Review, Vol. 33 (1997), 1431-73.
84. NAmC, 'Proposed Model Ethical Protocol for Collecting DNA Samples - Draft' (October 1995), 22. This draft was later published with very few changes in the Houston Law Review. North American Regional Committee of the Human Genome Diversity Project, 'Proposed Model Ethical Protocol for Collecting DNA Samples', Houston Law Review, Vol. 33 (1997), 1431-73.
85. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research published The Belmont Report on 18 April 1979. The Report outlines the major conditions of informed consent: consent must be given voluntarily by competent and informed individuals. Moore v. Regents of the University of California expands the concept of 'informed' to include disclosure of researchers' knowledge of their interests: John Moore v. Regents of the University of California et al., 241 Cal. Rptr. 147 (1990).
86. It should be noted that it does not follow that individual consent was deemed irrelevant. Group consent was not in place of, but in addition to, individual informed consent. See NAmC, Draft, op. cit. note 62, 8.
87. Ibid., 3.
88. Ibid., 9. Note also the switch in language in this quote. The easy substitution of 'population-based' for 'group' illustrates the slipperiness of the latter term, and the way in which it easily crosses the boundary of biology and society.
89. Ibid., 8.
90. For the quotations in this section illustrating the two definitions of 'group', see NAmC, Draft, op. cit. note 62, 9.
91. Ibid., 5.
92. Ibid., 10.
93. Ibid., 11.
94. These other 'knowledgeable' individuals, it suggests, might include members of local organizations, churches, health care workers, 'traditional leaders' and 'experienced fieldworkers': ibid., 4, 11.
95. David Wilkins, American Indian Sovereignty and the US Supreme Court (Austin: University of Texas Press, 1997), 214-15. Also see Felix Cohen, Handbook of Federal Indian Law (Charlottesville, VA: Michie Bobbs-Merrill Law Publishers, 1982 edn), 246-48.
96. David Wilkins, American Indian Sovereignty and the US Supreme Court (Austin: University of Texas Press, 1997), 214-15. Also see Felix Cohen, Handbook of Federal Indian Law (Charlottesville, VA: Michie Bobbs-Merrill Law Publishers, 1982 edn), 246-48.
97. The terms 'genetic reductionism','geneticization' and 'genetic essentialism' are often used to describe this purported reduction of social categories to genetic ones.
98. In addition to researchers in Europe, a population geneticist in India worried that requiring group consent as proscribed by a Western biomedical context would be impractical for reasons of differing social and cultural conventions in India. To require group consent, this scientist argued, would be to force researchers perilously to intervene and invent new cultural and social conventions. See: 'Lessons Learned from the Indian Experience', talk presented to the First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research (Bethesda, MD, 25-26 September 2000).
99. Eric Juengst, 'Group Identity and Human Diversity: Keeping Biology Straight from Culture', American Journal of Human Genetics, Vol. 63 (1998), 673-77, at 674.
100. Juengst's proposal (ibid., 677) that one look for 'scientific alternatives to the use of identified social groups as templates for population-genomic research' also creates this problem. By going to the other end of the spectrum and rejecting the use of social categories, Juengst's proposed solution also shuts down broader debates in biology about the relationship between social/cultural and biological groups, and fails to recognize that these groups come into being together, in relationship to one another.
101. The most notable and widely recognized effort is the deCode project in Iceland. However, there are by now many other such projects, including the US National Human Genome Research Institutes' Single Nucleotide Polymorphism Map project, and the US National Institutes of Environmental Health Sciences' Environmental Genome Project. For articles documenting some of these new Projects, see: Deborah A. Nickerson et al., 'DNA Sequence Diversity in a 9.7-kb Region of the Human Lipoprotein Lipase Gene', Nature Genetics, Vol. 19 (July 1998), 233-40; Francis S. Collins, Lisa D. Brooks and Aravinda Chakravarti, 'A DNA Polymorphism Discovery Resource on Human Genetic Variation', Genome Research, Vol. 8 (1998), 1229-31; Elliot Marshall, 'Gene Prospecting in Remote Populations', Science, Vol. 278 (24 October 1997), 565.
102. The most notable and widely recognized effort is the deCode project in Iceland. However, there are by now many other such projects, including the US National Human Genome Research Institutes' Single Nucleotide Polymorphism Map project, and the US National Institutes of Environmental Health Sciences' Environmental Genome Project. For articles documenting some of these new Projects, see: Deborah A. Nickerson et al., 'DNA Sequence Diversity in a 9.7-kb Region of the Human Lipoprotein Lipase Gene', Nature Genetics, Vol. 19 (July 1998), 233-40; Francis S. Collins, Lisa D. Brooks and Aravinda Chakravarti, 'A DNA Polymorphism Discovery Resource on Human Genetic Variation', Genome Research, Vol. 8 (1998), 1229-31; Elliot Marshall, 'Gene Prospecting in Remote Populations', Science, Vol. 278 (24 October 1997), 565.
103. The most notable and widely recognized effort is the deCode project in Iceland. However, there are by now many other such projects, including the US National Human Genome Research Institutes' Single Nucleotide Polymorphism Map project, and the US National Institutes of Environmental Health Sciences' Environmental Genome Project. For articles documenting some of these new Projects, see: Deborah A. Nickerson et al., 'DNA Sequence Diversity in a 9.7-kb Region of the Human Lipoprotein Lipase Gene', Nature Genetics, Vol. 19 (July 1998), 233-40; Francis S. Collins, Lisa D. Brooks and Aravinda Chakravarti, 'A DNA Polymorphism Discovery Resource on Human Genetic Variation', Genome Research, Vol. 8 (1998), 1229-31; Elliot Marshall, 'Gene Prospecting in Remote Populations', Science, Vol. 278 (24 October 1997), 565.
104. In a keynote address to a conference (sponsored by the Harvard School of Public Health and the National Institute of Environmental Sciences) on ethical, legal and social (ELSI) issues raised by studying 'populations exposed to environmental toxins', Eric Juengst, the first director of the ELSI Program at the National Center for Human Genome Research (now an Institute), observed that addressing the questions raised by studying genetic differences in special populations would be as expensive and as complicated as the Human Genome Project itself. Said Juengst: 'Give us three billion dollars and 15 years and we will create a civil rights law'. Eric Juengst, 'The Next Level of Difficulty: Ethical and Social Challenges in Environmental Genetics', paper presented to the conference on 'Genomic Research on Populations Exposed to Environmental Toxins: Ethical, Legal and Social Issues' (Boston, MA, 13-14 November 1998).
105. See Collins et al., op. cit. note 78.