American Indians and Alaska Natives (AI/ANs) have striking cancer-related health disparities. Although AI/ANs might benefit from biospecimen studies, their experience with unethical and unregulated research has led them to distrust scientists, especially genetic researchers. Sensitive issues include the ownership and appropriate use of biospecimens and the relation between individual rights and tribal regulations. To address this troubling situation, while advancing basic research on cancer control, we identify a pressing need to educate AI/ANs and solicit their views on biobanking. To meet this need we propose public deliberation, which has been used successfully in various ethical debates. Instead of merely soliciting attitudes, opinions, or preferences, deliberation involves the public in resolving ethical and policy conundrums by considering diverse points of view and formulating mutually acceptable solutions. This approach aligns well with Native values of respect and cooperation. Our sponsor, the National Congress of American Indians, regards biobanking and genetic research as important issues for AI/ANs. The proposed study will engage 30 AI/AN community members and stakeholders at each of 7 rural and urban sites (N = 210). Our primary questions for deliberation are: """"""""Is biobanking of value to you personally, to your community or tribe, and to the AI/AN population?"""""""" and """"""""If you consider biobanking to be of value, how do you think it should be implemented and regulated at the personal, tribal, regional, and national levels?"""""""" Our Specific Aims are as follows: 1) Develop or adapt culturally appropriate educational materials. 2) Use these materials to conduct an educational session for a group of 30 AI/AN community members at each of our 7 sites. 3) Randomize participants at each site into a deliberative (DI) and a non-deliberative (NDC) group. DI will discuss cultural and regulatory issues relevant to biobanking and conclude with policy recommendations while NDC engages in non-educational, non-deliberative activities. We will audio-record and analyze each DI session and take extensive field notes on each NDC session. 4) Use the TurningPoint audience response system to administer a survey to all participants 3 times: before and after the educational session, and again after the DI or NDC session. 5) Evaluate and analyze survey and deliberative data for use by tribal entities and the National Congress of American Indians. Biobanking has been incorporated into the national health research agenda and is forcefully promoted as a strategy to improve care. Deliberation by the lay public is essential to ensure that AI/ANs make informed decisions about the potential of biobanking to help future generations. If deliberation can be successfully applied to a topic as complex as biobanking, it can serve as a model for other contentious issues in Native health.
Deliberation engages the public in resolving ethical and policy issues by considering diverse points of view and formulating solutions. The collection of tissue, blood, and other types of samples for biobanking must include the perspectives of American Indian and Alaska Native people. Education and deliberation are essential for this population to make informed decisions about the potential of biobanking to help future generations.
