Human Subjects Protection in a Tribally-Governed Community: Respecting Sovereignty While Protecting Individuals and Communities

Colonial and exploitative research experiences contribute greatly to distrust found in some Native American communities. Conducting ethical research in tribal communities requires deliberate partnerships with tribal leaders and community members as well as an ongoing presence in the community that is not related to research. For researchers and tribe alike, conducting research in a tribal community requires a clear understanding, acknowledgement and respect of tribal sovereignty including the importance of self-governance that serves as the cornerstone for internal management of tribal affairs. Informed consent should include ongoing individual and community consent with the understanding that the process for community consent must include provisions for the preservation of language and culture while protecting Indigenous Knowledge. The Navajo Nation initiated the Navajo Nation Human Research Review Board (HRRB) in 1996 which has been a model for the tribal institutionalization of human subjects' protection. The HRRB has three overarching goals: protect the community, protect the people, and protect the Navajo Nation's heritage. It requires that all data collected within their jurisdiction should not only benefit, but also belong to the Nation. At the invitation of the Fort Belknap Community Council (FBCC), NIH CC staff and the Navajo Nation Review Board Chair traveled to Montana to dialogue with the tribe about establishing a tribal IRB and data safety and management. Implications for the conduct of ethical research in tribal communities including developing policies that include human subjects' protection at the individual and community level and issues surrounding data integrity and ownership were also discussed.