AER17 Panel II: Sovereignty in Research


Moderator: Sara Chandros Hull, PhD; IRB Chair; Director, Bioethics Core, National Human Genome Research Institute; Faculty, Department of Bioethics; Clinical Center, NIH;
Heather L. Larsen, MEd; Tirbal IRB Administrator -- Research Specialist, Sisseton-Wahpeton Oyate (Sioux Tribe)
Terry J. M Powell; IRB Administrator, Alaska Area IRB
Bobby R. Saunkeah, RN, MSHCE, CIP; Manger, Division of Research and Population Health, Chickasaw Nation; Human Research Subjects Protections Administrator; Chickasaw Nation IRB; Reverend, Episcopal Church

The history of research with Indigenous populations in the United States includes important advances with respect to specific topics (e.g., vaccines, diabetes) and research approaches (e.g., community-based participatory research). However, instances of egregious ethics violations tend to dominate the narratives about tribal research both within and outside of tribal communities. For example, the Nutritional Studies in Residential Schools in Canada during the 1940s, the Study of Alcohol Abuse in a Northern Alaska community during the 1980s, and studies of Havasupai biospecimens in Arizona during the early 2000s, are three frequently cited examples of research harms that often drive present-day conversations about tribal research to start from a place of fear. The sovereign status of American Indian and Alaska Native nations, however, provides an opportunity for tribes to steward research in a way that reflects cultural values and that benefits and protects their citizens and communities. In the context of changing federal and institutional research policies, it is increasingly important to move narratives about tribal research beyond fear toward conversations that acknowledge points of tension and possible benefit, respect tribal sovereignty, and identify the practical needs necessary to support tribal research oversight. This session will provide an overview of historical experiences of tribal research, convey the importance of tribal sovereignty in guiding research for the benefit of tribal peoples, and review implementation needs associated with rapidly evolving research technology and interest in research oversight among tribal nations.