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A framework for enhancing ethical genomic research with Indigenous communities

Author

Listed:
  • Katrina G. Claw

    (University of Washington)

  • Matthew Z. Anderson

    (The Ohio State University
    The Ohio State University)

  • Rene L. Begay

    (University of Colorado Anschutz Medical Campus)

  • Krystal S. Tsosie

    (Vanderbilt University
    Turtle Mountain Community College)

  • Keolu Fox

    (University of California San Diego)

  • Nanibaa’ A. Garrison

    (Seattle Children’s Hospital and Research Institute
    University of Washington)

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.

Suggested Citation

  • Katrina G. Claw & Matthew Z. Anderson & Rene L. Begay & Krystal S. Tsosie & Keolu Fox & Nanibaa’ A. Garrison, 2018. "A framework for enhancing ethical genomic research with Indigenous communities," Nature Communications, Nature, vol. 9(1), pages 1-7, December.
    • Handle: RePEc:nat:natcom:v:9:y:2018:i:1:d:10.1038_s41467-018-05188-3
    DOI: 10.1038/s41467-018-05188-3
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    Cited by:

    1. Julie A. Beans & Bobby Saunkeah & R. Brian Woodbury & Terry S. Ketchum & Paul G. Spicer & Vanessa Y. Hiratsuka, 2019. "Community Protections in American Indian and Alaska Native Participatory Research—A Scoping Review," Social Sciences, MDPI, vol. 8(4), pages 1-18, April.
    2. Katrina G. Claw & Casey R. Dorr & Erica L. Woodahl, 2024. "Implementing community-engaged pharmacogenomics in Indigenous communities," Nature Communications, Nature, vol. 15(1), pages 1-5, December.
    3. Nunn, Jack S & Shafee, Thomas, 2021. "Standardised Data on Initiatives – STARDIT: Beta Version," OSF Preprints w5xj6, Center for Open Science.

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