Responsible Research With Urban American Indians and Alaska Natives

Abstract

American Indian and Alaska Native (AI/AN) communities harbor understandable mistrust of research. Outside researchers have historically controlled processes, promulgating conclusions and recommended policies with virtually no input from the communities studied. Reservation-based communities can apply sovereignty rights conferred by the federal government to change this research trajectory. Many tribes now require review and approval before allowing research activities to occur, in part through the development of regulatory codes and oversight measures. Tribal oversight ensures that research is directed toward questions of importance to the community and that results are returned in ways that optimize problem solving. Unfortunately, tribal governance protections do not always extend to AI/ANs residing in urban environments. Although they represent the majority of AI/ANs, urban Indians face an ongoing struggle for visibility and access to health care. It is against this backdrop that urban Indians suffer disproportionate health problems. Improved efforts to ensure responsible research with urban Indian populations requires attention to community engagement, research oversight, and capacity building. We consider strategies to offset these limitations and develop a foundation for responsible research with urban Indians.

Access and Management: Indigenous Perspectives on Genomic Data Sharing

“…Although the sovereignty of federally recognized tribes is an important justification for considering alternative approaches, it is important to note that the concerns about past research misconduct and the need for community oversight are shared by Indigenous groups that lack federal recognition, such as Native Hawaiians, or lack sovereignty, such as urban American Indians. 3,21 As concerns emerge, Indigenous data sovereignty concepts and new Although tribes recognize the efficiencies that data sharing may offer, tribal partners noted that the current approach to data sharing as reflected in federal policy 10 12 How-Indigenous Genomic Data Sharing -Garrison et al governance models have gained traction to assert more comprehensive tribal control over data derived from Indigenous peoples and promote productive partnerships with researchers. 8,22,23 Tribal sovereignty empowers governance across tribal jurisdictions of peoples, lands, and interests, raising opportunities and challenges for tribal oversight of research and governance of data.…”

Diabetes Prevention and Care Capacity at Urban Indian Health Organizations

“…All but three of the UIHOs that were identified as actively offering services in the country in 2017 participated; as such, it provides a comprehensive view of diabetes prevention and care capacity for AI/AN-serving safety net organizations in urban areas nationwide. The study joins others in filling the research gap on services and health needs of urban AI/AN people (17). The study emphasized organizational capacity, a topic important for uptake of evidence-based diabetes prevention and care programs.…”

Perspectives on Genetic Research: Results From a Survey of Navajo Community Members

“…These are attempts to rectify the concerns expressed by American Indian communities. In particular, for genomic data, the unrestricted access to genomic data ( Hudson et al, 2020 ) and recruitment of tribal members from urban areas who are living off-tribal lands ( James et al, 2018 ; Tsosie et al, 2019 ) pose critical issues for tribes.…”