A framework for enhancing ethical genomic research with Indigenous communities

Основы совершенствования этических исследований генома с участием коренных народов
Ripan S. Malhi, Katrina G. Claw, Matthew Z. Anderson, Rene L. Begay, Krystal S. Tsosie, Keolu Fox, Nanibaa’ A. Garrison, Alyssa C. Bader, Jessica Bardill, Deborah A. Bolnick, Jada L. Brooks, Anna Cordova, Nathan Nakatsuka, Angela Neller, Jennifer Raff, Jamie M. Singson, Kim TallBear, Tada Vargas, Joseph Yracheta
2018-07-23

Indigenous communitiescapacity buildingcultural competencyethical engagement in genomic researchunderrepresentation in genetic and clinical research
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.
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Applying these six principles can foster collaboration between researchers and Indigenous communities to ethically integrate genomic technology into healthcare settings.
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Inclusion of underrepresented communities in genomic research can expand understanding of genomic influences on health and improve clinical approaches for all populations.
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Indigenous peoples are starkly underrepresented in genetic and clinical health research, limiting their likelihood to benefit from genomic healthcare advances.
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The authors propose six principles for ethical engagement in genomic research with Indigenous communities: understand existing regulations, foster collaboration, build cultural competency, improve research transparency, support capacity building, and disseminate findings.

Engagement framework for genomic research with Indigenous communities

Principles and practices for enhancing ethical participation, collaboration, transparency, cultural competency, regulatory alignment, capacity building, and dissemination to increase Indigenous inclusion in genomic research

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2018-07-23
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Authors
Ripan S. Malhi
Katrina G. Claw
Matthew Z. Anderson
Rene L. Begay
Krystal S. Tsosie
Keolu Fox
Nanibaa’ A. Garrison
Alyssa C. Bader
Jessica Bardill
Deborah A. Bolnick
Jada L. Brooks
Anna Cordova
Nathan Nakatsuka
Angela Neller
Jennifer Raff
Jamie M. Singson
Kim TallBear
Tada Vargas
Joseph Yracheta
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