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

Authors :
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
Chagné 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
Reading J
Carroll SR
Source :
Nature reviews. Genetics [Nat Rev Genet] 2020 Jun; Vol. 21 (6), pp. 377-384. Date of Electronic Publication: 2020 Apr 06.
Publication Year :
2020

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.

Details

Language :
English
ISSN :
1471-0064
Volume :
21
Issue :
6
Database :
MEDLINE
Journal :
Nature reviews. Genetics
Publication Type :
Academic Journal
Accession number :
32251390
Full Text :
https://doi.org/10.1038/s41576-020-0228-x