Review

. 2020 Jun;21(6):377-384.

doi: 10.1038/s41576-020-0228-x. Epub 2020 Apr 6.

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

Maui Hudson^{1

2}, Nanibaa' A Garrison³, Rogena Sterling⁴, Nadine R Caron^{5

6}, Keolu Fox⁷, Joseph Yracheta^{8

9}, Jane Anderson¹⁰, Phil Wilcox^{11

12}, Laura Arbour¹³, Alex Brown^{14

15}, Maile Taualii¹⁶, Tahu Kukutai¹⁷, Rodney Haring¹⁸, Ben Te Aika¹¹, Gareth S Baynam¹⁹, Peter K Dearden^{11

20}, David Chagné^{21

22}, Ripan S Malhi²³, Ibrahim Garba²⁴, Nicki Tiffin^{25

26

27}, Deborah Bolnick^{28

29}, Matthew Stott³⁰, Anna K Rolleston³¹, Leah L Ballantyne¹³, Ray Lovett³², Dominique David-Chavez^{24

33}, Andrew Martinez²⁴, Andrew Sporle³⁴, Maggie Walter^{35

36

37}, Jeff Reading³⁸, Stephanie Russo Carroll^{24

39}

Affiliations

¹ Faculty of Māori and Indigenous Studies, University of Waikato, Hamilton, New Zealand. maui.hudson@waikato.ac.nz.
² Genomics Aotearoa, University of Otago, Dunedin, New Zealand. maui.hudson@waikato.ac.nz.
³ Institute for Society and Genetics, University of California, Los Angeles, CA, USA.
⁴ Faculty of Law, University of Waikato, Hamilton, New Zealand.
⁵ Centre for Excellence in Indigenous Health, University of British Columbia, Vancouver, BC, Canada.
⁶ British Columbia Cancer, Michael Smith Genome Sciences Centre, Vancouver, BC, Canada.
⁷ Department of Global Health, University of California, San Diego, CA, USA.
⁸ Johns-Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
⁹ Native BioData Consortium, Eagle Butte, SD, USA.
¹⁰ Department of Anthropology, New York University, New York, NY, USA.
¹¹ Genomics Aotearoa, University of Otago, Dunedin, New Zealand.
¹² Department of Mathematics and Statistics, University of Otago, Dunedin, New Zealand.
¹³ Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
¹⁴ Aboriginal Health Equity, South Australian Medical and Health Research Institute, Adelaide, SA, Australia.
¹⁵ University of Adelaide, Adelaide, SA, Australia.
¹⁶ Clinical Transformation, Hawaii Permanente Medical Group, Honolulu, HI, USA.
¹⁷ National Institute of Demographic and Economic Analysis, University of Waikato, Hamilton, New Zealand.
¹⁸ Center for Indigenous Cancer Research, Roswell Park Comprehensive Cancer Centre, Buffalo, NY, USA.
¹⁹ Faculty of Medicine and Health Sciences, University of Western Australia, Perth, WA, Australia.
²⁰ Biochemistry Department, University of Otago, Dunedin, New Zealand.
²¹ The New Zealand Institute for Plant and Food Research Limited (Plant & Food Research), Palmerston North, New Zealand.
²² Genomics Aotearoa, Palmerston North, New Zealand.
²³ Department of Anthropology, Carl R. Woese Institute for Genomic Biology, University of Illinois, Urbana, IL, USA.
²⁴ Native Nations Institute at the Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ, USA.
²⁵ Computational Biology Division, University of Cape Town, Cape Town, South Africa.
²⁶ Wellcome Centre for Infectious Disease Research in Africa, University of Cape Town, Cape Town, South Africa.
²⁷ Centre for Infectious Disease Epidemiology Research, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa.
²⁸ Department of Anthropology, University of Connecticut, Storrs, CT, USA.
²⁹ Institute for Systems Genomics, University of Connecticut, Storrs, CT, USA.
³⁰ School of Biological Sciences, University of Canterbury, Christchurch, New Zealand.
³¹ Manawaora, The Centre for Health, Tauranga, New Zealand.
³² Research School of Population Health, Australian National University, Canberra, ACT, Australia.
³³ Colorado State University, Fort Collins, CO, USA.
³⁴ Department of Statistics, University of Auckland, Auckland, New Zealand.
³⁵ School of Social Science, University of Tasmania, Hobart, TAS, Australia.
³⁶ Maiam nayri Wingara (Australian Indigenous Data Sovereignty Collective), Hobart, TAS, Australia.
³⁷ Global Indigenous Data Alliance, Oñati, Spain.
³⁸ Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada.
³⁹ Mel and Enid Zuckerman College of Public Health, University of Arizona, Tucson, AZ, USA.

PMID: 32251390
DOI: 10.1038/s41576-020-0228-x

Review

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

Maui Hudson et al. Nat Rev Genet. 2020 Jun.

. 2020 Jun;21(6):377-384.

doi: 10.1038/s41576-020-0228-x. Epub 2020 Apr 6.

Authors

Affiliations

¹ Faculty of Māori and Indigenous Studies, University of Waikato, Hamilton, New Zealand. maui.hudson@waikato.ac.nz.
² Genomics Aotearoa, University of Otago, Dunedin, New Zealand. maui.hudson@waikato.ac.nz.
³ Institute for Society and Genetics, University of California, Los Angeles, CA, USA.
⁴ Faculty of Law, University of Waikato, Hamilton, New Zealand.
⁵ Centre for Excellence in Indigenous Health, University of British Columbia, Vancouver, BC, Canada.
⁶ British Columbia Cancer, Michael Smith Genome Sciences Centre, Vancouver, BC, Canada.
⁷ Department of Global Health, University of California, San Diego, CA, USA.
⁸ Johns-Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
⁹ Native BioData Consortium, Eagle Butte, SD, USA.
¹⁰ Department of Anthropology, New York University, New York, NY, USA.
¹¹ Genomics Aotearoa, University of Otago, Dunedin, New Zealand.
¹² Department of Mathematics and Statistics, University of Otago, Dunedin, New Zealand.
¹³ Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
¹⁴ Aboriginal Health Equity, South Australian Medical and Health Research Institute, Adelaide, SA, Australia.
¹⁵ University of Adelaide, Adelaide, SA, Australia.
¹⁶ Clinical Transformation, Hawaii Permanente Medical Group, Honolulu, HI, USA.
¹⁷ National Institute of Demographic and Economic Analysis, University of Waikato, Hamilton, New Zealand.
¹⁸ Center for Indigenous Cancer Research, Roswell Park Comprehensive Cancer Centre, Buffalo, NY, USA.
¹⁹ Faculty of Medicine and Health Sciences, University of Western Australia, Perth, WA, Australia.
²⁰ Biochemistry Department, University of Otago, Dunedin, New Zealand.
²¹ The New Zealand Institute for Plant and Food Research Limited (Plant & Food Research), Palmerston North, New Zealand.
²² Genomics Aotearoa, Palmerston North, New Zealand.
²³ Department of Anthropology, Carl R. Woese Institute for Genomic Biology, University of Illinois, Urbana, IL, USA.
²⁴ Native Nations Institute at the Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ, USA.
²⁵ Computational Biology Division, University of Cape Town, Cape Town, South Africa.
²⁶ Wellcome Centre for Infectious Disease Research in Africa, University of Cape Town, Cape Town, South Africa.
²⁷ Centre for Infectious Disease Epidemiology Research, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa.
²⁸ Department of Anthropology, University of Connecticut, Storrs, CT, USA.
²⁹ Institute for Systems Genomics, University of Connecticut, Storrs, CT, USA.
³⁰ School of Biological Sciences, University of Canterbury, Christchurch, New Zealand.
³¹ Manawaora, The Centre for Health, Tauranga, New Zealand.
³² Research School of Population Health, Australian National University, Canberra, ACT, Australia.
³³ Colorado State University, Fort Collins, CO, USA.
³⁴ Department of Statistics, University of Auckland, Auckland, New Zealand.
³⁵ School of Social Science, University of Tasmania, Hobart, TAS, Australia.
³⁶ Maiam nayri Wingara (Australian Indigenous Data Sovereignty Collective), Hobart, TAS, Australia.
³⁷ Global Indigenous Data Alliance, Oñati, Spain.
³⁸ Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada.
³⁹ Mel and Enid Zuckerman College of Public Health, University of Arizona, Tucson, AZ, USA.

PMID: 32251390
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.

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

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

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