Tribal Community Perspectives on Genomics Research and Data Sharing: A Mixed-Methods Study

Abstract

Precision medicine will likely fail to redress disproportionately high rates of chronic conditions without equitable approaches for the collectivization and sharing of genomics and health data from American Indian and Alaska Native communities. Sequential exploratory mixed methods characterized Tribal community members’ thoughts and perspectives on genomics research, data privacy, and data sharing. Survey data were collected from adult enrolled members of the Cheyenne River Sioux Tribe (N=125) recruited from Tribal health fairs to assess positive and negative motivators contributing to willingness to participate in genomics and health research. Respondents were purposively selected to participate in focus group interviews (N=20 across 3 cohorts), which were inductively coded for content and thematic analyses. Participants expressed increased willingness to participate in research studies led or partnered with trusted organizations such as the Indian Health Service, or nonprofit research institutes. However, participants were less willing or even unwilling to participate in health research led or partnered with federal institutions or pharmaceutical companies. This potentially has impact on the Genomic Data Sharing Policy instituted by the National Institutes of Health for the deposition of federally funded research data. Based on participants’ moderated discussions, a model was developed that encapsulated themes related to data sharing, data access, data security, and data stewardship with embedded histories of trust and distrust which, in turn, relate to facilitating direct community benefits for research and long-term considerations for Tribes to self-direct their own data decisions. Hence, adequately fostering Tribal decision-making agency and authority has the potential to dismantle power imbalances or exacerbate them.