Recommendations to Researchers for Aiding in Increasing American Indian Representation in Genetic Research and Personalized Medicine

Abstract

Increasing American Indian/Alaska Native (AI/AN) representation in genetic research is critical to ensuring that personalized medicine discoveries do not widen AI/AN health disparities by only benefiting well-represented populations. One reason for the under-representation of AIs/ANs in research is warranted research distrust due to abuse of some AI/AN communities in research. An approach to easing the tension between protecting AI/AN communities and increasing the representation of AI/AN persons in genetic research is community-based participatory research. This approach was used in a collaboration between a tribe and academic researchers in efforts to increase AI/AN participation in genetic research. From the lessons learned, the authors propose recommendations to researchers that may aid in conducting collaborative and respectful research with AI/AN tribes/communities and ultimately assist in increasing representation of AIs/ANs in personalized medicine discoveries.

Tribal Tobacco Use Project II: Planning, Implementation, and Dissemination Using Culturally Relevant Data Collection among American Indian Communities

“…Including the community as a partner in all decisions made for the research [14,17] is requested, if not mandated, by tribes when considering whether they will engage in the research [18,19]. To facilitate engagement and participation from the tribes, study staff engaged in targeted outreach to tribal health directors and various urban American Indian community agencies in Minnesota.…”

“…Written research agreements, such as tribal resolutions, can be helpful and are often required by tribes to formalize research collaborations and are a transparent way to describe the mutual goals, responsibilities, and intended research benefits to the various partners. Research agreements should be revisited frequently and updated as needed to ensure accurate reflection of evolving research collaborations [19]. Please refer to the National Indian Health Board (www.nihb.org (accessed on 21 January 2022)) and National Congress of American Indians (www.ncai.org (accessed on 21 January 2022)) for additional considerations.…”

Applying an equity lens to pharmacogenetic research and translation to under‐represented populations

“…The relationship established should also be sustained beyond a single study to continue to provide benefits for both the researcher and the population, with several examples of CBPR being used successfully within American Indian/Alaskan Native communities 22–24 . Carroll et al provides eight recommendations based on CBPR principles as a framework for increasing American Indian representation in PGx research 25 . Importantly, they highlight building trust within the community, practicing cultural humility, providing resources and support within the community, and finding a balance between the realistic benefits to the community and the knowledge gained in pursuit of research 25 .…”

“… 22 , 23 , 24 Carroll et al provides eight recommendations based on CBPR principles as a framework for increasing American Indian representation in PGx research. 25 Importantly, they highlight building trust within the community, practicing cultural humility, providing resources and support within the community, and finding a balance between the realistic benefits to the community and the knowledge gained in pursuit of research. 25 Although their recommendations focus on the American Indian community, this framework can be adapted for use within other under‐represented and more heterogeneous populations (Figure 1 ).…”

“…25 Importantly, they highlight building trust within the community, practicing cultural humility, providing resources and support within the community, and finding a balance between the realistic benefits to the community and the knowledge gained in pursuit of research. 25 Although their recommendations focus on the American Indian community, this framework can be adapted for use within other underrepresented and more heterogeneous populations (Figure 1). While establishing a research relationship within a community, resources should be addressed.…”