A framework for enhancing ethical genomic research with Indigenous communities

• Published in: Nature communications Vol. 9; no. 1; pp. 2957 - 7
• Main Authors: Claw, Katrina G., Anderson, Matthew Z., Begay, Rene L., Tsosie, Krystal S., Fox, Keolu, Garrison, Nanibaa’ A.
• Format: Journal Article
• Language: English
• Published: London Nature Publishing Group UK 27-07-2018; Nature Publishing Group; Nature Portfolio
• Subjects: 631/208/212/2301; 692/308/2056; 706/648/179; 706/648/453; Collaboration; Community Participation; Cultural Competency; Disease Susceptibility; Ethics; Ethics Committees, Research - ethics; Ethics Committees, Research - standards; Genetic Research - ethics; Genomics - ethics; Health care; Health Services Research; Health Services, Indigenous - ethics; Health Services, Indigenous - standards; Humanities and Social Sciences; Humans; Indigenous peoples; Medical treatment; multidisciplinary; Perspective; Population Groups; Science; Science (multidisciplinary); Transparency
• ISSN: 2041-1723; 2041-1723
• DOI: 10.1038/s41467-018-05188-3

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.
Indigenous peoples are still underrepresented in genetic research. Here, the authors propose an ethical framework consisting of six major principles that encourages researchers and Indigenous communities to build strong and equal partnerships to increase trust, engagement and diversity in genomic studies.