Indigenous data sovereignty in the context of big data

Abstract

AbstractBackgroundDespite evidence that 1 of every 3 American Indian / Alaska Native (AI/AN) elders will develop dementia, they remain substantially underrepresented in Alzheimer’s disease and related dementias (ADRD) research. In our partnership with the Oneida Nation of Wisconsin, scientists from the Wisconsin Alzheimer’s Disease Research Center (ADRC) find ourselves at the intersection of two influential and opposing movements: 1) a movement to ensure Tribal data sovereignty, driven by abuse stemming from unrestricted access to AI/AN data and samples; and 2) researchers' push toward free and unfettered access to big datasets, including genetic data. National ADRD datasets include information from AI/AN participants for whom Tribal affiliation is unknown and there is little to no guidance on how to conduct research with datasets where AI/AN race is identified but Tribal affiliation is unknown. We see a need to establish guidelines for researchers utilizing ADRD big datasets and repositories containing data and samples from AI/AN of unknown Tribal affiliation.MethodWe have contacted stakeholders of ADRD research using AI/AN data of unknown Tribal affiliation, including the National Institute of Aging (NIA) Alzheimer’s Disease Research Centers Program, the NIA Office of Special Populations, the National Alzheimer’s Coordinations Center, the National Centralized Repository for Alzheimer’s Disease and Related Dementias, the National Institute of Health Tribal Health Research Office, and AI/AN scientists who are stakeholders in the use of AI/AN data. Future efforts will involve Alzheimer’s Disease genetic, biomarker sample, and data repositories, and AI/AN elders, youth, and Tribal members.ResultWe plan to develop a process through which proposed analyses that include AI/ANN data will be culturally informed and reviewed by AI/AN scientist ‐ e.g., an AI/AN Advisory Committee. This would ensure that proposals to use AI/AN data and samples from ADRD big datasets and repositories do not inflict further harm to this historically marginalized group. Moreover, the review would ensure that data sovereignty measures are addressed prior to analysis and publication.ConclusionWe propose to convene an AI/AN Advisory Committee to guide ADRD researchers on culturally responsible management of data, samples, and genetic information collected from AI/AN participants, their Tribes, and their Nations.