A framework for enhancing ethical genomic research with Indigenous communities.

Claw KG1, Anderson MZ2,3, Begay RL4, Tsosie KS5,6, Fox K7, Garrison NA8,9; Summer internship for INdigenous peoples in Genomics (SING) Consortium.

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.