A framework for enhancing ethical genomic research with Indigenous communities

Abstract

Integration of genomic technology into healthcare settings establishes new capabilities to predict disease susceptibility and optimize treatment regimes. Yet, Indigenous peoples remain starkly underrepresented in genetic and clinical health research and are unlikely to benefit from such efforts. To foster collaboration with Indigenous communities, we propose six principles for ethical engagement in genomic research: understand existing regulations, foster collaboration, build cultural competency, improve research transparency, support capacity building, and disseminate research findings. Inclusion of underrepresented communities in genomic research has the potential to expand our understanding of genomic influences on health and improve clinical approaches for all populations.

Archaic hominin introgression into modern human genomes

“…First is addressing the sampling bias in large human genetics studies; most human genetics studies focus on present‐day peoples in western European countries and the U.S., which has long been criticized by the biological anthropological community (Reardon & TallBear, ). Fortunately, the limitations of this bias have been increasingly appreciated (Bolnick, Raff, Springs, Reynolds, & Miró‐Herrans, ; Claw et al, ; Gokcumen, ). For example, extensive sampling of present‐day populations that live in Papua New Guinea revealed previously hidden and surprisingly recent introgression from Denisovans into the ancestors of these populations (Jacobs et al, ).…”

Access and Management: Indigenous Perspectives on Genomic Data Sharing

“…The limited community involvement typical of most data repositories is insufficient to address Indigenous concerns about research oversight. 27 Although some guidance around conducting genetic research with tribes has been developed, 28,29 there is an important need to generate stronger guidance and policy language to ensure more comprehensive controls over data derived from Indigenous peoples and support productive partnerships with researchers.…”

The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies

“…Wide-scale public participation in genetic-based research enables investigators to cultivate databases that capture genetic diversity from a broad range of populations, thereby facilitating the development of effective individualized therapies for people of all racial and ethnic backgrounds (Sirugo, Williams, & Tishkoff, 2019). However, there is a consistent underrepresentation of individuals from racial and ethnic minority groups in the United States in genetic research (Claw et al, 2018;Need & Goldstein, 2009;Popejoy & Fullerton, 2016). A 2009 analysis reported that 96% of genetic studies were conducted on populations of European descent (terminology defined by authors; Need & Goldstein, 2009).…”