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

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Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.
Nature Reviews Genetics ( IF 39.1 ) Pub Date : 2020-04-06 , DOI: 10.1038/s41576-020-0228-x
Maui Hudson _{1,

2} , Nanibaa' A Garrison ₃ , Rogena Sterling ₄ , Nadine R Caron _{5,

6} , Keolu Fox ₇ , Joseph Yracheta _{8,

9} , Jane Anderson ₁₀ , Phil Wilcox _{2,

11} , Laura Arbour ₁₂ , Alex Brown _{13,

14} , Maile Taualii ₁₅ , Tahu Kukutai ₁₆ , Rodney Haring ₁₇ , Ben Te Aika ₂ , Gareth S Baynam ₁₈ , Peter K Dearden _{2,

19} , David Chagné _{20,

21} , Ripan S Malhi ₂₂ , Ibrahim Garba ₂₃ , Nicki Tiffin _{24,

25,

26} , Deborah Bolnick _{27,

28} , Matthew Stott ₂₉ , Anna K Rolleston ₃₀ , Leah L Ballantyne ₁₂ , Ray Lovett ₃₁ , Dominique David-Chavez _{23,

32} , Andrew Martinez ₂₃ , Andrew Sporle ₃₃ , Maggie Walter _{34,

35,

36} , Jeff Reading ₃₇ , Stephanie Russo Carroll _{23,

38}

Affiliation

Faculty of Māori and Indigenous Studies, University of Waikato, Hamilton, New Zealand.
Genomics Aotearoa, University of Otago, Dunedin, New Zealand.
Institute for Society and Genetics, University of California, Los Angeles, CA, USA.
Faculty of Law, University of Waikato, Hamilton, New Zealand.
Centre for Excellence in Indigenous Health, University of British Columbia, Vancouver, BC, Canada.
British Columbia Cancer, Michael Smith Genome Sciences Centre, Vancouver, BC, Canada.
Department of Global Health, University of California, San Diego, CA, USA.
Johns-Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
Native BioData Consortium, Eagle Butte, SD, USA.
Department of Anthropology, New York University, New York, NY, USA.
Department of Mathematics and Statistics, University of Otago, Dunedin, New Zealand.
Department of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
Aboriginal Health Equity, South Australian Medical and Health Research Institute, Adelaide, SA, Australia.
University of Adelaide, Adelaide, SA, Australia.
Clinical Transformation, Hawaii Permanente Medical Group, Honolulu, HI, USA.
National Institute of Demographic and Economic Analysis, University of Waikato, Hamilton, New Zealand.
Center for Indigenous Cancer Research, Roswell Park Comprehensive Cancer Centre, Buffalo, NY, USA.
Faculty of Medicine and Health Sciences, University of Western Australia, Perth, WA, Australia.
Biochemistry Department, University of Otago, Dunedin, New Zealand.
The New Zealand Institute for Plant and Food Research Limited (Plant & Food Research), Palmerston North, New Zealand.
Genomics Aotearoa, Palmerston North, New Zealand.
Department of Anthropology, Carl R. Woese Institute for Genomic Biology, University of Illinois, Urbana, IL, USA.
Native Nations Institute at the Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ, USA.
Computational Biology Division, University of Cape Town, Cape Town, South Africa.
Wellcome Centre for Infectious Disease Research in Africa, University of Cape Town, Cape Town, South Africa.
Centre for Infectious Disease Epidemiology Research, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa.
Department of Anthropology, University of Connecticut, Storrs, CT, USA.
Institute for Systems Genomics, University of Connecticut, Storrs, CT, USA.
School of Biological Sciences, University of Canterbury, Christchurch, New Zealand.
Manawaora, The Centre for Health, Tauranga, New Zealand.
Research School of Population Health, Australian National University, Canberra, ACT, Australia.
Colorado State University, Fort Collins, CO, USA.
Department of Statistics, University of Auckland, Auckland, New Zealand.
School of Social Science, University of Tasmania, Hobart, TAS, Australia.
Maiam nayri Wingara (Australian Indigenous Data Sovereignty Collective), Hobart, TAS, Australia.
Global Indigenous Data Alliance, Oñati, Spain.
Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada.
Mel and Enid Zuckerman College of Public Health, University of Arizona, Tucson, AZ, USA.

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.

中文翻译：

权利、利益和期望：关于不受限制地访问基因组数据的土著观点。

在促进不受限制地获取基因组数据的开放科学环境中，解决遗传资源中的土著权益变得越来越具有挑战性。尽管基因研究的土著经验受到一系列负面相互作用的影响，但人们越来越认识到，只有通过土著社区的更多参与才能实现公平的利益。信任、问责制和公平问题是原住民对基因研究和基因组数据共享的批评的基础。这篇 Perspectives 文章重点介绍了原住民社区围绕基因组数据共享的已确定问题，并提出了基因组研究人员可以采用的原则和行动，以承认社区在数据中的权利和利益。

更新日期：2020-04-06

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