The human genome diversity project

Abstract This article examines the relationship between indigenous sovereignty and identification as instanced by the legal and political debates informing the Human Genome Diversity Project. The HGDP proposes to map the history of human origins and migrations by the identification and measurement of populations. I analyze the impact of the criticisms of this agenda and methodology by indigenous nations, organizations, and advocacy groups, focusing on the incommensurability of populations with indigenous identifications as peoples. My argument is that the work of identification is the mediation of the terms and conditions of indigenous sovereignty in the very real places where their intellectual property rights and the ethics of scientific research are negotiated. Keywords: cultural identity politicspopulation/human geneticsHuman Genome Diversity Projectproperty rightsbioethicssovereigntyindigenous peoples Acknowledgments I would like to thank Professor Donna Haraway, Professor Louis Owens, Professor Angela Davis and the anonymous reviewers for Cultural Studies for their invaluable comments and editorial suggestions on earlier drafts of this article. Notes The current draft of the declaration can be accessed at the UN's High Commissioner for Human Rights website on indigenous peoples at: http://www.unhchr.ch/indigenous/main.html The cultural politics of self-definition is analysed much fuller in Barker () and Kauanui (). I recognize that 'participants' requires an awkward adjustment for the reader, since the term usually refers to the actual human subject participating in a study. I am using the term in order to indicate that the HGDP's founders, board of directors and supporters include not only research geneticists but also anthropologists, archaeologists, linguistics, lawyers and ethicists. I had a series of e-mail exchanges with one of the founding participants in the winter of 2000 in which he insisted that no such list was ever produced or released. When I very diplomatically reminded him that he discussed the list in several interviews and articles, he stopped replying. The HGDP's Ethical Guidelines are posted on the HGDP's website at: http://www.stanford.edu/group/morrinst/hgdp.html The first meeting was held in July 1991 at Stanford University. Participants addressed the overall goals and sampling strategies of the HGDP (Roberts , p. 1300, Serjeantson , p. 24). It was decided, after much heated discussion over sampling strategies, that a core of about 500 populations would be included within the study and that approximately 25 individuals from each group sampled (Roberts , p. 1300, Lewin , p. 28). The third meeting was held in February 1993 at the National Institute of Health headquarters in Bethesda, Maryland. The agenda was to address the ethical and human rights implications of the HGDP (Serjeantson , p. 26). Twelve invited participants included lawyers, philosophers and ethicists. The conclusion of the meeting was a proposal to draft a set of ethical guidelines. Susan (Sue) Serjeantson, Director of the Institute of Advanced Studies at Australia National University and chair of the Oceania Regional Executive Committee of the HGDP at the time, stated that while the ethical concerns around issues of informed consent that the meeting participants addressed were 'both real and significant', it was decided that they were not 'so serious that the Project should not go forward' (Serjeantson , pp. 25–6). The fourth meeting was held in September 1993 in Sardinia, Italy, and was attended by 75 people from 24 different countries: 'The meeting focused on scientific matters, such as the criteria to be used in selecting a standard set of genes for analysis, and on logistic matters, such as transferring DNA technology to participating countries in the developing world' (Serjeantson , p. 26). The meeting concluded with the acceptance of a Draft Ethical Guideline statement for the HGDP subject to the legal and ethical requirements of each participating region (Serjeantson , p. 26). Needless to say, there was much debate at the meeting over these criteria and the methods that they represented. It would be interesting and important to take up these debates more thoroughly. I wonder to what extent, for instance, the controversies over the HGDP for indigenous peoples would have been different had a geographical-grid approach been adopted instead of a 'representative' one (i.e. an approach that ignored national boundaries for geographical locatedness). For a good analysis of the impact of sampling strategies on the data produced and the conclusions possible, see the NRC's Evaluating Human Genetic Diversity (NRC 1997, pp. 23–35). RAFI's mission statement is posted on their website at: http://www.rafi.org Shenandoah's letter was posted on Native-L; all quotes here are from a downloaded version of the letter (archived at: http://niikaan.fdl.cc.mn.us/natnet/ls-arch.html). The HGDP's Ethical Guidelines are posted on its website at: http://www.stanford.edu/group/morrinst/hgdp.html Catherine N. Twinn, of the Sawridge Indian Band in Slave Lake, Alberta, has since joined the NAEC as a member. However, one indigenous person does not a full participation make. Friedlaender's letter was posted on Native-L; all quotes here are from a downloaded version of the letter (archived at: http://niikaan.fdl.cc.mn.us/natnet/ls-arch.html). The council's resolution was posted on Native-L; all quotes here are from a downloaded version of the resolution (archived at: http://niikaan.fdl.cc.mn.us/natnet/ls-arch.html). The depositing of genetic samples with the ATCC is common practice for research scientists intending to file patent applications on the material. See their website at: http://www.atcc.org/