Evidence map›Paper›PMID 32251390›Full record

ReviewNature reviews. Genetics2020

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

Maui Hudson, Nanibaa' A Garrison, Rogena Sterling, Nadine R Caron, Keolu Fox, Joseph Yracheta, Jane Anderson, Phil Wilcox, Laura Arbour, Alex Brown and 21 more

Abstract readReview
PubMed Publisher
In one paragraph

Review in Nature reviews. Genetics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 125 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
125citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

125 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review.International journal of environmental research and public health · 2021
    Pooled it
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  9. Evo-devo and the Biodiversity Crisis.Results and problems in cell differentiation · 2026
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65 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

31 authors.

Maui HudsonFaculty of Māori and Indigenous Studies, University of Waikato, Hamilton, New Zealand. maui.hudson@waikato.ac.nz.ORCID http://orcid.org/0000-0003-3880-4015
Nanibaa' A GarrisonInstitute for Society and Genetics, University of California, Los Angeles, CA, USA.ORCID http://orcid.org/0000-0002-6228-3216
Rogena SterlingFaculty of Law, University of Waikato, Hamilton, New Zealand.ORCID http://orcid.org/0000-0002-5949-387X
Nadine R CaronCentre for Excellence in Indigenous Health, University of British Columbia, Vancouver, BC, Canada.
Keolu FoxDepartment of Global Health, University of California, San Diego, CA, USA.
Joseph YrachetaJohns-Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
Jane AndersonDepartment of Anthropology, New York University, New York, NY, USA.
Phil WilcoxGenomics Aotearoa, University of Otago, Dunedin, New Zealand.
Laura ArbourDepartment of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
Alex BrownAboriginal Health Equity, South Australian Medical and Health Research Institute, Adelaide, SA, Australia.
Maile TaualiiClinical Transformation, Hawaii Permanente Medical Group, Honolulu, HI, USA.
Tahu KukutaiNational Institute of Demographic and Economic Analysis, University of Waikato, Hamilton, New Zealand.
Rodney HaringCenter for Indigenous Cancer Research, Roswell Park Comprehensive Cancer Centre, Buffalo, NY, USA.
Ben Te AikaGenomics Aotearoa, University of Otago, Dunedin, New Zealand.
Gareth S BaynamFaculty of Medicine and Health Sciences, University of Western Australia, Perth, WA, Australia.ORCID http://orcid.org/0000-0003-4920-9553
Peter K DeardenGenomics Aotearoa, University of Otago, Dunedin, New Zealand.ORCID http://orcid.org/0000-0001-7790-9675
David ChagnéThe New Zealand Institute for Plant and Food Research Limited (Plant & Food Research), Palmerston North, New Zealand.ORCID http://orcid.org/0000-0003-4018-0694
Ripan S MalhiDepartment of Anthropology, Carl R. Woese Institute for Genomic Biology, University of Illinois, Urbana, IL, USA.
Ibrahim GarbaNative Nations Institute at the Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ, USA.ORCID http://orcid.org/0000-0001-9127-2842
Nicki TiffinComputational Biology Division, University of Cape Town, Cape Town, South Africa.ORCID http://orcid.org/0000-0001-5083-2735
Deborah BolnickDepartment of Anthropology, University of Connecticut, Storrs, CT, USA.ORCID http://orcid.org/0000-0001-8444-5127
Matthew StottSchool of Biological Sciences, University of Canterbury, Christchurch, New Zealand.ORCID http://orcid.org/0000-0002-2082-9460
Anna K RollestonManawaora, The Centre for Health, Tauranga, New Zealand.
Leah L BallantyneDepartment of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
Ray LovettResearch School of Population Health, Australian National University, Canberra, ACT, Australia.
Dominique David-ChavezNative Nations Institute at the Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ, USA.
Andrew MartinezNative Nations Institute at the Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ, USA.
Andrew SporleDepartment of Statistics, University of Auckland, Auckland, New Zealand.
Maggie WalterSchool of Social Science, University of Tasmania, Hobart, TAS, Australia.
Jeff ReadingFaculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada.
Stephanie Russo CarrollNative Nations Institute at the Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ, USA.ORCID http://orcid.org/0000-0002-8996-8071

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Access to InformationGenetic PrivacyGenetic ResearchGenome, HumanGenomicsHuman RightsHumansIndigenous PeoplesInformation Dissemination

Identifiers

PMID32251390

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.