Wabanaki Research Review Board

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CAPACITY BUILDING PROJECT 2: ABSTRACT Many American Indian communities view research with skepticism and even frank mistrust, in part because research has historically been done in or on communities rather than with them. “Helicopter research” is a term used in Native communities to describe investigators who fly in and out, staying only long enough to collect data. While researchers are rewarded with funding and publications, Native people continue to struggle with poverty and health disparities. Tensions between Native communities and researchers generally arise from conflicting views about the priority of topics to study, research agendas, and the use and ownership of data, particularly regarding issues of consent, confidentiality, secondary use of specimens, returning results to donors, the need for advance review of publications, and data sharing. In light of such understandable concerns, investigators have been advised to consider the concept of group harm and to extend regulatory oversight for tribal research beyond the protection of individuals to include the protection of social groups. Other important concerns include stigmatization of Native communities, relevance and applicability of the studies and their benefit for future generations, and the need for information on research that community members can understand. These concerns have led to reluctance to engage in research, unless the communities themselves participate in a study’s design, implementation, and regulation. When these concerns are addressed through regulating research, engaging communities, improving cultural competency of researchers, and transparency of research procedures, research can be fruitful. The legacy of unfortunate circumstances and the resulting concerns have spawned a new era of tribal oversight and regulation, manifested by the growing number of tribal Research Review Boards, and their counterparts in urban Indian health organizations. Accordingly, Wabanaki Public Health, a tribally founded and directed public health district serving the 4 federally recognized tribes in Maine, seeks to establish a Wabanaki Research Review Board. The Research Review Board will facilitate timely and thoughtful reviews, help investigators navigate regulations governing human subjects research, and serve as an integrated pathway for current and future regulatory needs of Wabanaki Public Health and the 4 tribes. Our Specific Aims are to: 1) Build a tribal Research Review Board that will augment the capacity of the 4 Wabanaki tribes to self-govern, support and educate investigators and Wabanaki tribal members, and minimize research- related community harm; 2) Ensure integrity of data, compliance with tribal and federal policies, and protection of human subjects; and 3) Educate Wabanaki Public Health leaders and staff and identify strategies to sustain the Research Review Board after grant funding ends. The Wabanaki Research Review Board promises to have far reaching impact on Wabanaki Public Health’s efforts to regulate research and build the regional research enterprise. The collaborative design of Capacity Building Project 2 will encourage high-quality, tribally regulated, community-based research that improves the health of the 4 Wabanaki tribes.