Barriers and Strategies Related to Qualitative Research on Genetic Ancestry Testing in Indigenous Communities

Abstract

Conducting genetics-related research with populations that have historically experienced considerable harm and little benefit from genetics research poses unique challenges for understanding community-based perceptions of new genetic technologies. This article identifies challenges and strategies for collecting qualitative data on the perceptions of direct-toconsumer (DTC) Genetic Ancestry tests (GAT) among diverse Indigenous communities. Based on a 3-year project related to perceptions, attitudes, and values associated with genetic ancestry testing among diverse Indigenous communities in Oklahoma, the engagement process revealed specific opportunities to improve the process of qualitative data collection related to GAT, and more broadly, to conduct genetics-related research with Indigenous communities in culturally and methodologically appropriate ways. Priority areas include issues related to participant recruitment and tribal advisory boards, challenges of self-identification as a recruitment mechanism, and the necessity of including Indigenous researchers in all aspects of the research process.

Indigenous Genomic Databases: Pragmatic Considerations and Cultural Contexts

“…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 challenging to create, maintain and sustainably provide remuneration for formal and informal leadership positions, and recognize when to create new leadership roles enabling progress reflecting the urgency required. Moreover, genomic research projects with and for Indigenous peoples may attract less than enthusiastic political will and be afforded less than required priority and thus encounter funding shortfalls along the process (33,43). Meager resources may complicate Indigenous data governance.…”

Impacts of personal DNA ancestry testing

“…Our results, in combination with past findings, have implications for cultural identity formation with important possible downstream effects on identity reporting initiatives, such as the U.S. Census. Indeed, the potential for DNA ancestry test results to prompt changes in how recipients respond on the U.S. Census has been discussed in the literature [66,10,5] with one study of 45 undergraduate students suggesting one-third changing their census identification [36]. We recognize that the categorizations of ancestry and self-reported race and ethnicity used in this study limit the findings as they differ from the U.S. Census including its option for multiraciality.…”

“…Another explanation stems from the hypothesis that ancestry testing might reinforce racial privileges. For example, ancestry testing has been used to reinforce white privilege and eugenics rhetoric among White supremacists [76], and ancestry results have been appropriated to claim entitlement to tribal or scholarship benefits reserved for indigenous or minority groups [8,36,66,14,9,10,5,69]. A third explanation might be that individuals who self-identified as a category other than "Caucasian" in our study were only interested in the health-related genomic testing that was part of the larger SGHI longitudinal study and not the ancestry testing component.…”

“…DTC DNA ancestry testing's recent and projected growth has critical policy implications in a variety of settings [66,10,5,69]. The perceived lack of oversight of DTC DNA ancestry testing by regulatory bodies has raised concerns about its uses [38], especially in high-stakes settings such as healthcare, U.S. Census reporting, Native American tribal affiliation, college admissions, and job enrollment [39,65,18,35,40].…”