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

被引：0
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作者：
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 Tiffin
Deborah 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
机构：
[1] University of Waikato,Faculty of Māori and Indigenous Studies
[2] University of Otago,Genomics Aotearoa
[3] University of California,Institute for Society and Genetics
[4] University of Waikato,Faculty of Law
[5] University of British Columbia,Centre for Excellence in Indigenous Health
[6] Michael Smith Genome Sciences Centre,British Columbia Cancer
[7] University of California,Department of Global Health
[8] Johns-Hopkins Bloomberg School of Public Health,Department of Anthropology
[9] Native BioData Consortium,Department of Mathematics and Statistics
[10] New York University,Department of Medical Genetics
[11] University of Otago,National Institute of Demographic and Economic Analysis
[12] University of British Columbia,Faculty of Medicine and Health Sciences
[13] Aboriginal Health Equity,Biochemistry Department
[14] South Australian Medical and Health Research Institute,Department of Anthropology, Carl R. Woese Institute for Genomic Biology
[15] University of Adelaide,Native Nations Institute at the Udall Center for Studies in Public Policy
[16] Clinical Transformation,Computational Biology Division
[17] Hawaii Permanente Medical Group,Wellcome Centre for Infectious Disease Research in Africa
[18] University of Waikato,Centre for Infectious Disease Epidemiology Research, School of Public Health and Family Medicine
[19] Center for Indigenous Cancer Research,Department of Anthropology
[20] Roswell Park Comprehensive Cancer Centre,Institute for Systems Genomics
[21] University of Western Australia,School of Biological Sciences
[22] University of Otago,Research School of Population Health
[23] The New Zealand Institute for Plant and Food Research Limited (Plant & Food Research),Department of Statistics
[24] Genomics Aotearoa,School of Social Science
[25] University of Illinois,Faculty of Health Sciences
[26] University of Arizona,Mel and Enid Zuckerman College of Public Health
[27] University of Cape Town,undefined
[28] University of Cape Town,undefined
[29] University of Cape Town,undefined
[30] University of Connecticut,undefined
[31] University of Connecticut,undefined
[32] University of Canterbury,undefined
[33] Manawaora,undefined
[34] The Centre for Health,undefined
[35] Australian National University,undefined
[36] Colorado State University,undefined
[37] Fort Collins,undefined
[38] University of Auckland,undefined
[39] University of Tasmania,undefined
[40] Maiam nayri Wingara (Australian Indigenous Data Sovereignty Collective),undefined
[41] Global Indigenous Data Alliance,undefined
[42] Simon Fraser University,undefined
[43] University of Arizona,undefined
来源：
Nature Reviews Genetics | 2020年 / 21卷
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摘要：
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.
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页码：377 / 384
页数：7
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