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

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, Walter, M ORCID: 0000-0002-8028-5274, Reading, J and Carroll, SR 2020 , 'Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data' , Nature Reviews Genetics, vol. 21, no. 6 , pp. 377-384 , doi: 10.1038/s41576-020-0228-x.

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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.

Item Type: Article
Authors/Creators:Hudson, M and Garrison, NA and Sterling, R and Caron, NR and Fox, K and Yracheta, J and Anderson, J and Wilcox, P and Arbour, L and Brown, A and Taualii, M and Kukutai, T and Haring, R and Te Aika, B and Baynam, GS and Dearden, PK and Chagna, D and Malhi, RS and Garba, I and Tiffin, N and Bolnick, D and Stott, M and Rolleston, AK and Ballantyne, LL and Lovett, R and David-Chavez, D and Martinez, A and Sporle, A and Walter, M and Reading, J and Carroll, SR
Keywords: data, Indigenous rights
Journal or Publication Title: Nature Reviews Genetics
Publisher: Nature Publishing Group
ISSN: 1471-0056
DOI / ID Number: 10.1038/s41576-020-0228-x
Copyright Information:

© Springer Nature Limited 2020

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