Evidence map›Paper›PMID 29514717›Full record

ArticleHuman genomics2018

Including all voices in international data-sharing governance.

Jane Kaye, Sharon F Terry, Eric Juengst, Sarah Coy, Jennifer R Harris, Don Chalmers, Edward S Dove, Isabelle Budin-Ljøsne, Clement Adebamowo, Emilomo Ogbe and 12 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Human genomics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
32citing papers in PubMed, 2 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

32 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Involvement of children and young people in the conduct of health research: A rapid umbrella review.Health expectations : an international journal of public participation in health care and health policy · 2024
    Pooled it
  2. Pooled it
  3. Trial
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  16. Big Data in Nephrology.Nature reviews. Nephrology · 2021
    Review
  17. Review
  18. Of Screening, Stratification, and Scores.Journal of personalized medicine · 2021
    Review
  19. Article
  20. Review
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

22 authors.

Jane KayeCentre for Health Law and Emerging Technologies, NDPH, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford, OX2 7DD, UK. jane.kaye@law.ox.ac.uk.ORCID 0000-0002-7311-4725
Sharon F TerryGenetic Alliance USA, 4301 Connecticut Ave NW, Suite 404, Washington DC, 20008-2369, USA.
Eric JuengstCenter for Bioethics, University of North Carolina at Chapel Hill, 333 McNider Hall, Chapel Hill, NC, 27599-7240, USA.
Sarah CoyCentre for Health Law and Emerging Technologies, NDPH, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford, OX2 7DD, UK.
Jennifer R HarrisDepartment of Genetics and Bioinformatics, Norwegian Institute of Public Health, PO Box 4404, Nydalen, 0403, Oslo, Norway.
Don ChalmersFaculty of Law, University of Tasmania, Private Bag 89, Hobart, Tasmania, 7001, Australia.
Edward S DoveSchool of Law, University of Edinburgh, Old College, South Bridge, Edinburgh, EH8 9YL, UK.
Isabelle Budin-LjøsneCohort Studies, Norwegian Institute of Public Health, PO Box 4404, Nydalen, 0403, Oslo, Norway.
Clement AdebamowoCenter for Bioethics and Research, Ibadan, Nigeria.
Emilomo OgbeInternational Centre for Reproductive Health, University of Gent, De Pintepark II, De Pintelaan 185, 9000, Ghent, Belgium.
Louise BezuidenhoutInstitute for Science, Innovation and Society, University of Oxford, 64 Banbury Road, Oxford, OX2 6PN, UK.
Michael MorrisonCentre for Health Law and Emerging Technologies, NDPH, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford, OX2 7DD, UK.
Joel T MinionPolicy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle upon Tyne, NE1 7RU, UK.
Madeleine J MurtaghPolicy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle upon Tyne, NE1 7RU, UK.
Jusaku MinariUehiro Research Division for iPS Cell Ethics, Center for iPS Cell Research and Application, Kyoto University, 53 Kawahara-cho, Shogoin, Sakyo-ku, Kyoto, 606-8507, Japan.
Harriet TeareCentre for Health Law and Emerging Technologies, NDPH, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford, OX2 7DD, UK.
Rosario IsasiInstitute for Bioethics and Health Policy, Department of Human Genetics, Leonard M. Miller School of Medicine, University of Miami, 1501 NW 10th Avenue, Biomedical Research Building (BRB) Room 361, Miami, FL, 33136, USA.
Kazuto KatoDepartment of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, Osaka, 565-0871, Japan.
Emmanuelle Rial-SebbagNational Institute for Research and Health (Inserm), UMR 1027 Inserm, Toulouse University, 37 allées Jules Guesde, 31000, Toulouse, France.
Patricia MarshallDepartment of Bioethics, School of Medicine, TA200, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH, 44106-4976, USA.
Barbara KoenigUCSF School of Nursing, Institute for Health and Aging, University of California, San Francisco, 3333 Calif. St, Laurel Heights, San Francisco, CA, 94118, USA.
Anne Cambon-ThomsenCNRS, Toulouse, France; Joint research unit on epidemiology and public health, Inserm (National Institute for Health and Medical Research) and University Toulouse III Paul Sabatier, Toulouse, France.

Funding

Center for Genomics and SocietyP50HG004488 · NHGRI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI HENDERSON, GAIL E · 2007 to 2017
$12.6M
Indigenous linguistic and cultural concepts of heritability and comprehension ofU01HG007654 · NHGRI · INSTITUTE OF HUMAN VIROLOGY · PI ADEBAMOWO, CLEMENT ADEBAYO · 2014 to 2016
$455k
Medical Research Council G1001799Medical Research Council MR/N01104X/1Medical Research Council MR/N01104X/2NHGRI NIH HHS P50 HG004488NHGRI NIH HHS U01 HG007654Wellcome TrustWellcome Trust 096599/2/11/Z
6 · The paper itself

Abstract

backgroundGovernments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facilitate access to datasets. The rationale behind this approach is that this will bring a number of benefits and enable advances in healthcare and medicine by allowing the maximum returns from the investment in research, as well as reducing waste and promoting transparency. As this approach gains momentum, these data-sharing practices have implications for many kinds of research as they become standard practice across the world. MAIN TEXT: The governance frameworks that have been developed to support biomedical research are not well equipped to deal with the complexities of international data sharing. This system is nationally based and is dependent upon expert committees for oversight and compliance, which has often led to piece-meal decision-making. This system tends to perpetuate inequalities by obscuring the contributions and the important role of different data providers along the data stream, whether they be low- or middle-income country researchers, patients, research participants, groups, or communities. As research and data-sharing activities are largely publicly funded, there is a strong moral argument for including the people who provide the data in decision-making and to develop governance systems for their continued participation.

conclusionsWe recommend that governance of science becomes more transparent, representative, and responsive to the voices of many constituencies by conducting public consultations about data-sharing addressing issues of access and use; including all data providers in decision-making about the use and sharing of data along the whole of the data stream; and using digital technologies to encourage accessibility, transparency, and accountability. We anticipate that this approach could enhance the legitimacy of the research process, generate insights that may otherwise be overlooked or ignored, and help to bring valuable perspectives into the decision-making around international data sharing.

Indexed as

GovernmentBiomedical ResearchHumansInformation DisseminationData sharingDigital technologiesGovernanceInclusionInternational researchPublic engagement

Identifiers

PMID29514717
PMCPMC5842530

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.