Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data

Maui Hudson, Nanibaa’ A. Garrison, Rogena Sterling, Nadine R. Caron, Keolu Fox, Joseph Yracheta, Jane Anderson, Phil Wilcox, Laura Arbour, Alex Brown, Maile Taualii, Tahu Kukutai, Rodney Haring, Ben Te Aika, Gareth S. Baynam, Peter K. Dearden, David Chagné, Ripan S. Malhi, Ibrahim Garba, Nicki TiffinDeborah Bolnick, Matthew Stott, Anna K. Rolleston, Leah L. Ballantyne, Ray Lovett, Dominique David-Chavez, Andrew Martinez, Andrew Sporle, Maggie Walter, Jeff Reading, Stephanie Russo Carroll

    Research output: Contribution to journalReview article

    Abstract

    Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.

    Original languageEnglish (US)
    Pages (from-to)377-384
    Number of pages8
    JournalNature Reviews Genetics
    Volume21
    Issue number6
    DOIs
    StatePublished - Jun 1 2020

    ASJC Scopus subject areas

    • Molecular Biology
    • Genetics
    • Genetics(clinical)

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  • Cite this

    Hudson, M., Garrison, N. A., Sterling, R., Caron, N. R., Fox, K., Yracheta, J., Anderson, J., Wilcox, P., Arbour, L., Brown, A., Taualii, M., Kukutai, T., Haring, R., Te Aika, B., Baynam, G. S., Dearden, P. K., Chagné, D., Malhi, R. S., Garba, I., ... Carroll, S. R. (2020). Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data. Nature Reviews Genetics, 21(6), 377-384. https://doi.org/10.1038/s41576-020-0228-x