Bridging the Divide between Genomic Science and Indigenous Peoples

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Seguin B. , “Genomics, Public Health and Developing Countries: The Case of the Mexican National Institute of Genomic Medicine,” Nature Reviews Genetics (October 2008): S5–S9. This paper reflects the joint effort of colloquium participants, staff of the O'Neill Institute, and staff of the Personalized Healthcare Initiative. Researchers from the O'Neill Institute and the Personalized Healthcare Initiative began investigating the open literature to better understand the context and content of the colloquium before the colloquium. Without in any way attempting to preempt discussion during the colloquium, we sought to identify common concerns about genomic science, clarify lessons learned from past experience and briefly compare formal codes, guidelines and protocols that have been developed to regulate research and healthcare related to genomic science among indigenous people and developing countries. The colloquium developed through short presentations from each participant on the general topics of “Hearing the Indigenous Perspective,” “Hearing the Perspectives of Developing Countries,” and “Implications for Healthcare and Genomic Science” with open discussion following the talks on each topic. After hearing and initially discussing the ideas of all participants, the colloquium continued by identifying and suggesting approaches to key issues that had emerged from its work. This discussion formulated the four key topics discussed in the body of this paper. The O'Neill Institute prepared and submitted a colloquium report entitled “Thematic Analysis of Colloquium” in partial fulfillment of its obligation to the Personalized Healthcare Initiative, Department of Health and Human Services who helped support the colloquium. The O'Neill Institute sent drafts of the colloquium report to all participants for review, comment and revision. The final report reflected the perspectives of all participants who have received a copy for their own records. We have supplemented the background research and colloquium discussion with additional material drawn from the literature and available databases about relevant topics in writing this paper.

Twelve international thought leaders gathered at Georgetown University to discuss these issues in January 2009 in a colloquium jointly sponsored by the Personalized Health Care Initiative, Department of Health and Human Services and the O'Neill Institute of National and Global Health Law Georgetown University. Participants included Doris Cook, Theresa Cullen, Jacinta Elston, Tonya Gonnella Frichner, James M. Galloway, Bette Keltner Jacobs, Gerardo Jimenez-Sanchez, Ted Mala, Clifton A. Poodry, Charles Rotimi, Rodrigue Takoudjou, and Ian Wronski. Representatives from the O'Neill Institute included Kimberly Bassett, Katherine Cherry, Jeff Collmann, Julie DeLoia, Charles H. Evans, Jr., Kevin Fitzgerald, S.J., and Jason Roffenbender. Gregory J. Downing, Jennifer Weisman, and Jessica Nadler represented the Personalized Health Care Initiative.

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These approaches to “community consent” differ from the concept of “group consent” initially proposed by the Model Ethical Protocol (MEP) of the Human Genome Diversity project. The key difference lies in the fundamental justification for the two consents and the entities to which they apply. Community consent derives from sociological criteria of community sovereignty, self-governance, and self-determination. The MEP concept of group consent derives from biological criteria that do not necessarily overlap with extant social groups and, as Reardon notes, poses fundamental questions about who defines the “group,” by what criteria, and for what research purpose (see Reardon , supra, note 3). In practice, the researchers defined the “groups” using criteria defined by the research protocol. In contrast, the procedures of community consent apply when indigenous research subjects live under the jurisdiction of some kind of self-governing indigenous community that defines the community using self-determined criteria of citizenship. Membership in the community rather than sampling criteria in a research protocol define the scope of consent procedures. The CIHR Guidelines give a range of circumstances to which the procedures of community consent might apply in varying ways. The Guidelines acknowledge the possibility that the procedures of community consent may not apply to research conducted with individuals living outside the jurisdiction of a self-governing indigenous community (see CIHR, supra, note 22).

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Communities not interested in training as scientists should, however, also be able to benefit from genomic research. The Amish provide a strong example of a community fully interested in participating in genomic research, but not necessarily interested in training as scientists. Ruder K. , “Genomics in Amish Country,” Genomic News Network, July 23, 2004.

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