Resolution to Call upon the National Institutes of Health to Consult with Tribal Nations and Establish Policies and Guidance for Tribal Oversight of Data on Tribal Citizens Enrolled in the All of Us Research Program

WHEREAS, the National Indian Health Board (NIHB), established in 1972, serving all federally recognized American Indian/Alaska Native (AI/AN) Tribal governments by advocating for the improvement of health care delivery to AI/ANs, as well as upholding the federal government’s Trust Responsibility to AI/AN Tribal governments, does hereby establish and submit the following resolution; and

WHEREAS, the National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency, and researchers funded by NIH have made important discoveries that have the potential to improve health and reduce health disparities; and

WHEREAS, the NIH established the All of Us Research Program to recruit one million or more people in the United States to improve health through precision medicine, which involves the collection of data and biospecimens from individuals to understand differences in lifestyle, environment, and biology, including analysis of genetic data; and

WHEREAS, American Indians and Alaska Natives (AI/ANs) have significant health disparities, such as an average life expectancy that is 5.5 years lower than that of the general United States population, that the findings of research could help address, but are often overlooked and not represented in research studies; and

WHEREAS, Tribal Nations are political, sovereign entities whose status stems from the inherent sovereignty they possess as self-governing people predating the founding of the United States, and since its founding the United States has recognized them as such and entered into treaties with them on that basis; and

WHEREAS, Tribal Nations have inherent sovereign rights to govern research that occurs with their citizens and on their lands, and are concerned that past negative experiences with research may continue to impact their nations; and

WHEREAS, in many cases, Tribal Nations have established Tribal research codes, laws, and research oversight processes to govern research to ensure it benefits their nations and reduces risks of harm to their communities; and