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Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data
journal contribution
posted on 2023-05-20, 17:18 authored by Hudson, M, Garrison, NA, Sterling, R, Caron, NR, Fox, K, Yracheta, J, Anderson, J, Wilcox, P, Arbour, L, Brown, A, Taualii, M, Kukutai, T, Haring, R, Te Aika, B, Baynam, GS, Dearden, PK, Chagna, D, Malhi, RS, Garba, I, Tiffin, N, Bolnick, D, Stott, M, Rolleston, AK, Ballantyne, LL, Lovett, R, David-Chavez, D, Martinez, A, Sporle, A, Margaret WalterMargaret Walter, Reading, J, Carroll, SRAddressing 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.
History
Publication title
Nature Reviews GeneticsVolume
21Issue
6Pagination
377-384ISSN
1471-0056Department/School
School of Social SciencesPublisher
Nature Publishing GroupPlace of publication
United KingdomRights statement
© Springer Nature Limited 2020Repository Status
- Restricted