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.

Fig. 1

An ethical framework for enhancing genomic research with Indigenous communities. The recognition of tribal sovereignty and research regulations are at the core of our ethical framework. Moving outward from the center, community engagement is necessary to build a foundation to create a collaborative partnership among researchers and community members. Starting from the right going clockwise, researchers should incorporate cultural competency, transparency, capacity building, and dissemination strategies to build trust, increase inclusion of diverse groups in genomic research, and enhance ethical research practices. The diagonal words represent core values that should be used throughout the research process