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
MacIntosh, Constance, Health Law Journal
In April, 2005, National Geographic Society and IBM launched a genetics research project which targets indigenous populations, the 'Genographic Project.' They aim to gather and analyze DNA samples from 100,000 indigenous peoples over a five-year period. Genographic Project researchers intend to use these samples to track the migratory pathways through which humans have populated the globe. (1) This project was officially launched just one month after news broke that another human genetics project, the International HapMapProject, had completed Phase I on schedule. (2) The HapMap Project researchers are studying genetic markers called 'haplotypes', (3) which can be used to map genetic inheritance over many generations. The HapMap researchers are looking for patterns of genetic variation, which they believe will illuminate how genetics contribute to disease. (4) Both the Genographic and HapMap Projects follow on and reflect aspects of an earlier research endeavor, the Human Genome Diversity Project [the "HGDP"], which also sought to collect genetic materials for population-based research. Like the Genographic Project, the HGDP focused on collecting tissue samples from indigenous populations. And, like the HapMap Project, the HGDP had a medical research component.
Presumably, the proponents of both the Genographic and HapMap projects know very well that the HGDP met with broad opposition, primarily from indige groups. (5) In the end, the HGDP was only marginally successful. (6) Although its proponents had hoped to collect tissue samples from 500 to 700 target indigenous populations, it only ended up with DNA samples from about 50 populations, many of which were 'donated' from pre-existing collections. (7)
The HGDP's limited outcome reflects the complex context in which the research was to take place. Genetic research involving indigenous populations provokes many legal, ethical and cultural issues. (8) Like any genetic research project, it incites questions about ownership of genetic samples including the information gleaned from those samples and, of course, about whether human genetic material is or ought to be patentable. As with the debate on the commercialization of indigenous peoples' 'traditional ecological knowledge,' genetic diversity sampling raises questions about access, consent, (9) exploitation and benefit sharing. (10)
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. This paper is, in part, a call for researchers and those concerned with indigenous/non-indigenous research projects to reconsider whether and how these debates should continue. In particular, 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 is not only about the complexity of ensuring culturally effective knowledge transfer, nor as a simple means of appeasing frustrations of local peoples, but also has to be understood as a manifestation of indigenous political and legal 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 scholarly scientists have become on-the-ground players in contests over indigenous people's claims of identity and rights.
The paper opens by identifying some of the reasons why scholarly and commercial researchers engage in population-based genetics research, and how commercial, medical and academic research interests often converge. In the second section, I turn to the now virtually defunct HGDP and consider how it was received by indigenous peoples and international organizations. …