Self-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation

• Published in: International journal of environmental research and public health Vol. 14; no. 11; p. 1324
• Main Authors: Hiratsuka, Vanessa Y, Beans, Julie A, Robinson, Renee F, Shaw, Jennifer L, Sylvester, Ileen, Dillard, Denise A
• Format: Journal Article
• Language: English
• Published: Switzerland MDPI AG 31.10.2017; MDPI
• Subjects: Adult; Alaska; Alaska Natives - psychology; Alaska Natives - statistics & numerical data; Biomedical Research - standards; Ethics; Federal government; Female; Health; Health care; Humans; Indians, North American - psychology; Indians, North American - statistics & numerical data; Male; Middle Aged; Minority Groups - psychology; Minority Groups - statistics & numerical data; Native North Americans; Ownership - statistics & numerical data; Personal Autonomy; Review boards; Sovereignty; Alaska; United States > US; trust; Alaska Native; research conduct; tribal; ethics; accountability; research; Native American; community review
• ISSN: 1660-4601; 1661-7827; 1660-4601
• DOI: 10.3390/ijerph14111324

Alaska Native (AN) and American Indian (AI) people are underrepresented in health research, yet many decline to participate in studies due to past researcher misconduct. Southcentral Foundation (SCF), an Alaska Native-owned and operated health care organization, is transforming the relationship between researchers and the tribal community by making trust and accountability required features of health research in AN/AI communities. In 1998, SCF assumed ownership from the federal government of health services for AN/AI people in south central Alaska and transformed the health system into a relationship-based model of care. This change reimagines how researchers interact with tribal communities and established community oversight of all health research conducted with AN/AI people in the region. We describe the SCF research review process, which requires tribal approval of the research concept, full proposal, and dissemination products, as well as local institutional review board approval, and a researcher-signed contract. This review evaluates research through the lens of tribal principles, practices, and priorities. The SCF example provides a framework for other tribes and organizations seeking to reshape the future of health research in AN/AI communities.