Indigenous Peoples, Genetic Research, Ethical Issues, Legal Issues, Cultural Issues, Patenting, Identity, Rights, Human Rights, Informed Consent, FPIC
Genetic research involving indigenous populations provokes many legal, ethical and cultural issues. Arguably, of these issues, two dominate the literature. The first is whether human genetic materials are or ought to be patentable, which is often argued against on the basis that such patents offend human dignity generally and are culturally offensive to many indigenous peoples. The second is whether researchers must obtain informed consent from representatives of indigenous groups as a whole before attempting to obtain consent for participation from individual members of that group. I argue that there is limited benefit in continuing to debate the patentability of human genetic material. I also argue that the debate on informed consent has to be understood as a manifestation of indigenous political and rights aspirations which researchers must consider and address. The through-line in this paper, therefore, is that by virtue of their research agendas, both commercial and academic scientists have become on-the-ground players in contests over indigenous people’s claims of identity and rights. This paper uses the Human Genome Diversity Project, the HapMap Project and the Genographic Project as its case studies.
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Constance MacIntosh, "Indigenous Self-Determination and Research on Human Genetic Material: A Consideration of the Relevance of Debates on Patents and Informed Consent, and the Political Demands on Researchers" (2006) 13 Health L J 213.