UA Research Project: Developing policy recommendations: Indigenous leader and individuals' perspectives on research, governance, and data sharing in Arizona

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PROJECT SUMMARY: RESEARCH PROJECT 1 – Linking Research to Policy: Indigenous leaders’ and individuals’ perspectives on research, governance, and data sharing in Arizona Indigenous Peoples have specific and longstanding concerns regarding the collection, storage, and use of specimens and data. Research on the perspectives of Indigenous individuals and communities on biobanking in Aotearoa New Zealand, Canada, Alaska, and Hawaii has found many issues related to ethics, policy, capacity, and a need for the recognition of Indigenous rights and interests for the governance of samples/data. In a workshop with collaborators of a university-tribal partnership and a set of interviews of tribal health professionals, policy experts, and tribal leaders, respondents themes included: importance of recognizing tribal sovereignty; the use of tribal research review processes; the view among many tribes that knowledge and intellectual property belong to the collective rather than to an individual; that scientific practices such as data sharing may not be in a tribe’s best interest; and the ongoing need for richer and continued discussion of data access, management, and sharing. Bolstering tribal data governance and enhancing other institutions application of Indigenous data governance in their policies becomes increasingly important as biomedical and genomics research moves toward broad data sharing policies. To address barriers that historically have impeded ethical research practices, we need to better understand Indigenous norms for research, data, and specimen governance. This research proposal connects the Inter Tribal Council of Arizona NARCH team with researchers at the University of Arizona under the guidance of the NARCH CAB and an international expert- practitioner Advisory Board. We apply an innovative Indigenous data governance framework to assess individuals’ perceptions and to review tribal norms and practices. Our long-term goal is to enhance tribal data governance in Arizona. Our research objective is to review tribal norms and practices for Indigenous specimen and data governance, and to assess Indigenous leaders’ and individuals’ perspectives on research, governance, and data sharing to inform the development of tribal data governance policies and practices in Arizona. We hypothesize that respondents will identify the importance of recognizing tribes as sovereign nations; that many will view knowledge and intellectual property as belonging to the collective group rather than to discrete individuals; and that there is a need for policies, practices, and trainings on Indigenous data governance topics such as data access, management, and sharing. We plan to accomplish our research objective by pursuing the following three specific aims: Aim 1: Analyze existing documents and research on tribal specimen/data storage policies. Aim 2: Assess Indigenous individuals’ opinions on (i) research, (ii) governance, and (iii) data sharing. Aim 3: Assess tribal leaders’ and program directors’ opinions on (i) research, (ii) governance, and (iii) data sharing. Aim 4: Develop specimen and data policy recommendations for tribes and other entities. All findings and outputs will be shared with tribal leaders, program directors, scholars, and others stakeholders via meetings, conferences, policy briefs, and manuscripts.