Genomic Research Through an Indigenous Lens: Understanding the Expectations

Abstract

Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples’ engagement with genomicresearch was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.

Access and Management: Indigenous Perspectives on Genomic Data Sharing

“…Many raised questions and concerns about needing policies and protections in place before data are shared and referenced the efforts of some tribes in developing policies. 22,32,33 apprehension about sharing data, confusion about whether data sharing is necessary in order to obtain certain grant funding, and recommendations for safeguards to protect privacy and confidentiality.…”

“…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. 24 With the emergence of large, national cohorts and studies -such as the All of Us precision medicine cohort that aims to oversample underrepresented populations, especially AI/AN/NH peoples 25,26 -the issue of appropriate governance of stored data and biological samples takes on greater importance.…”

Indigenous Genomic Databases: Pragmatic Considerations and Cultural Contexts

“…Unfortunately, success stories co-exist with negative, exploitative, stigmatizing, disempowering, and/or culturally insensitive examples (15,16). One example of such genomic research is that done with the Nuu-chah-nulth peoples in BC, Canada, whose blood samples were originally collected with the understanding that research would be done to elucidate the reason for their high incidence and severity of rheumatoid arthritis.…”

“…Further, there is lack of consideration of Indigenous communities as reflected in paucity of Indigenous scientists, genomic researchers, medical geneticists, genetic counselors, health care practitioners (3,15,33,34), and personnel in research organizations, and journal review/editorial committees. Such capacity is needed to spearhead genomic research and clinical applications for equity to be achieved.…”

“…It is important that the outcomes of these initiatives are equitable, benefit the community, and address Indigenous data sovereignty concerns regarding ethical use and on-going data security (15). To maximize community confidence and motivate participation, these initiatives are Indigenous-led and governed, with co-development of processes that ensure consenting is done effectively and appropriately, and benefits are consistent with Indigenous expectations.…”