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; Reading, J; Carroll, SR

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

Citation

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, Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data, Nature Reviews Genetics, 21, (6) pp. 377-384. ISSN 1471-0056 (2020) [Refereed Article]

Copyright Statement

DOI: doi:10.1038/s41576-020-0228-x

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 Details

Item Type:	Refereed Article
Keywords:	data, Indigenous rights
Research Division:	Human Society
Research Group:	Sociology
Research Field:	Sociology of migration, ethnicity and multiculturalism
Objective Division:	Indigenous
Objective Group:	Aboriginal and Torres Strait Islander community services
Objective Field:	Aboriginal and Torres Strait Islander community services not elsewhere classified
UTAS Author:	Walter, M (Professor Maggie Walter)
ID Code:	140602
Year Published:	2020
Web of Science^® Times Cited:	28
Deposited By:	Office of the School of Social Sciences
Deposited On:	2020-08-31
Last Modified:	2021-09-14
Downloads:	0

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