Abstract LB-158: Tribal sovereignty and approval for research in Native American communities

Abstract

Abstract Background: Native Americans (NAs) experience worse outcomes and lower chances of cancer survival than other racial groups in the US. Despite improvements in cancer screening techniques and major developments in cancer treatment in past decades, NA communities do not benefit equally from these advances. Furthermore, relatively little of the advancements in cancer research addresses the specific vulnerabilities and strengths in these communities. Community-based research with NA populations including cancer research is influenced by the ways tribes approach and approve research. Tribe specific approval processes are assertions of sovereignty and of tribal right to govern and manage activities on tribal lands. Researchers often interpret required tribal approval for research, presentation and publication as punitive and a barrier to timely research and dissemination. Objective: An overview of the evolution and range of tribal research approval processes can address the cultural discordance faced by researchers and NA communities and supports researchers’ effort to gain approval to conduct much needed community-based cancer research. Methods: This presentation outlines the diversity of tribal research processes, including established Tribal Institutional Review Boards (IRBs), Tribal Advisory boards, Tribal Council approval, and Indian Health Service (IHS) IRB approval. Guidance will be provided to inform the development of research study designs that meet the needs of the community and have the potential to guide cancer treatment practice and cancer prevention education. In addition, this review will demonstrate that respecting the distinct characteristics of separate tribes relative to experience with research and leadership oversight of research activities is important to obviate homogenization of NA communities and enhance the relevance of research. Conclusion: Research design, implementation and interpretation are strengthened by tribal research approval processes by requiring researchers to justify their research methods, hypotheses and expected benefits to the community and NA populations. Concurrently, adhering to procedures, protocols and requirements established by tribal councils supports tribal sovereignty in action. Citation Format: Carol Goldtooth, Nicolette Teufel-Shone, Francine C. Gachupin. Tribal sovereignty and approval for research in Native American communities [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr LB-158.