Including all voices in international data-sharing governance Public Deposited

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Creator
  • Minari, Jusaku
    • Other Affiliation: Uehiro 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
  • Morrison, Michael
    • Other Affiliation: Centre for Health Law and Emerging Technologies, NDPH, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford OX2 7DD, UK
  • Terry, Sharon F
    • Other Affiliation: Genetic Alliance USA, 4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369, USA
  • Marshall, Patricia
    • Other Affiliation: Department of Bioethics, School of Medicine, TA200, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH 44106-4976, USA
  • Chalmers, Don
    • Other Affiliation: Faculty of Law, University of Tasmania, Private Bag 89, Hobart, Tasmania 7001, Australia
  • Bezuidenhout, Louise
    • Other Affiliation: Institute for Science, Innovation and Society, University of Oxford, 64 Banbury Road, Oxford OX2 6PN, UK
  • Ogbe, Emilomo
    • Other Affiliation: International Centre for Reproductive Health, University of Gent, De Pintepark II, De Pintelaan 185, 9000 Ghent, Belgium
  • Kato, Kazuto
    • Other Affiliation: Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, Osaka 565-0871, Japan
  • Harris, Jennifer R
    • Other Affiliation: Department of Genetics and Bioinformatics, Norwegian Institute of Public Health, PO Box 4404, Nydalen, 0403 Oslo, Norway
  • Kaye, Jane
    • Other Affiliation: Centre for Health Law and Emerging Technologies, NDPH, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford OX2 7DD, UK; Melbourne Law School, University of Melbourne, 185 Pelham Street, Carlton, Victoria 3053, Australia
  • Coy, Sarah
    • Other Affiliation: Centre for Health Law and Emerging Technologies, NDPH, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford OX2 7DD, UK
  • Isasi, Rosario
    • Other Affiliation: Institute 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
  • Rial-Sebbag, Emmanuelle
    • Other Affiliation: National Institute for Research and Health (Inserm), UMR 1027 Inserm, Toulouse University, 37 allées Jules Guesde, 31000 Toulouse, France
  • Murtagh, Madeleine J
    • Other Affiliation: Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle upon Tyne NE1 7RU, UK
  • Koenig, Barbara
    • Other Affiliation: UCSF School of Nursing, Institute for Health and Aging, University of California, San Francisco, 3333 Calif. St, Laurel Heights, San Francisco, CA 94118, USA
  • Adebamowo, Clement
    • Other Affiliation: Center for Bioethics and Research, Ibadan, Nigeria; Institute of Human Virology Nigeria, Abuja, Nigeria; Greenebaum Comprehensive Cancer Center and Institute of Human Virology, University of Maryland School of Medicine, 725 W. Lombard St. Suite 445, Baltimore, MD 21201, USA
  • Teare, Harriet
    • Other Affiliation: Centre for Health Law and Emerging Technologies, NDPH, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford OX2 7DD, UK; Melbourne Law School, University of Melbourne, 185 Pelham Street, Carlton, Victoria 3053, Australia
  • Cambon-Thomsen, Anne
    • Other Affiliation: CNRS, 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
  • Budin-Ljøsne, Isabelle
    • Other Affiliation: Cohort Studies, Norwegian Institute of Public Health, PO Box 4404, Nydalen, 0403 Oslo, Norway
  • Dove, Edward S
    • Other Affiliation: School of Law, University of Edinburgh, Old College, South Bridge, Edinburgh EH8 9YL, UK
  • Juengst, Eric
    • Affiliation: School of Medicine, UNC Center for Bioethics
  • Minion, Joel T
    • Other Affiliation: Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle upon Tyne NE1 7RU, UK
Abstract
  • Abstract Background Governments, 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. Conclusions We 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.
Date of publication
Identifier
  • doi:10.1186/s40246-018-0143-9
Resource type
  • Article
Rights statement
  • In Copyright
Rights holder
  • The Author(s).
Language
  • English
Bibliographic citation
  • Human Genomics. 2018 Mar 07;12(1):13
Publisher
  • BioMed Central
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