Abstract
Amid the rapid growth of precision medicine and biobanking initiatives, there have been few efforts at cataloging the implications of these initiatives for Indigenous communities. A consortium involving a university and three American Indian/Alaska Native (AIAN) community partners is working to promote deliberation and dialog in AIAN communities about the potential benefits and risks of genomic research for those communities. The first of the consortium’s three planned deliberations was held in September 2018 with citizens of the Chickasaw Nation, a federally recognized tribe in south-central Oklahoma with a full-service medical center and growing research capacity and oversight. Consortium members and the Chickasaw Nation Department of Health Administration designed a deliberative forum for Chickasaw citizens to consider the potential benefits and risks of participating in genomic research and biobanks. In this manuscript, we describe the deliberative method used in this event and report on the ideas discussed during the tribal citizens’ deliberations. Chickasaw citizens identified many risks and benefits associated with genomic research and biobanks, including the potential for medical advancements that might benefit the Chickasaw community as well as the possibility of discrimination against the Chickasaw people. Although participants thought the potential benefits outweighed the potential risks, that moral calculation was contingent on whether control of the research and biobanks rested with Chickasaw leadership, researchers, and citizens.
Highlights
Amid excitement about the prospect that precision medicine research will yield targeted treatments based on individual genomic and environmental variation, concerns have been raised about the lack of racial and ethnic diversity among participants in genomic studies and biobanks (Cohn et al, 2017; Cornel and Bonham, 2017)
In the context of growing research capacity and oversight, the CEIGR deliberation team and Chickasaw Nation Department of Health Administration designed a deliberative forum for Chickasaw citizens to consider the potential benefits and risks of participating in genomic research and biobanks
There are varied definitions of public deliberation, this approach typically convenes diverse people from varied backgrounds to Sixteen tribal citizens residing in the Chickasaw Nation boundaries participated in the forum (10 women, 6 men), 15
Summary
Amid excitement about the prospect that precision medicine research will yield targeted treatments based on individual genomic and environmental variation, concerns have been raised about the lack of racial and ethnic diversity among participants in genomic studies and biobanks (Cohn et al, 2017; Cornel and Bonham, 2017). Among efforts to cultivate dialog about the potential benefits and risks of genomic research for AIAN communities is the Center for the Ethics of Indigenous Genomic Research (CEIGR) consortium, a National Institutes of Health Center of Excellence in ELSI Research (CEER) based at the University of Oklahoma and in collaboration with the Chickasaw Nation in Oklahoma, Southcentral Foundation in Alaska, and Missouri Breaks Industries Research Incorporated in South Dakota. In the context of growing research capacity and oversight, the CEIGR deliberation team and Chickasaw Nation Department of Health Administration designed a deliberative forum for Chickasaw citizens to consider the potential benefits and risks of participating in genomic research and biobanks. Chickasaw Nation collaborators sought to assess the utility of public deliberation as an approach to engaging their communities on issues about their health care system and future research directions.
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