. 2018 Mar 7;12(1):13.

doi: 10.1186/s40246-018-0143-9.

Including all voices in international data-sharing governance

Jane Kaye^{1

2}, Sharon F Terry³, Eric Juengst⁴, Sarah Coy⁵, Jennifer R Harris⁶, Don Chalmers⁷, Edward S Dove⁸, Isabelle Budin-Ljøsne⁹, Clement Adebamowo^{10

11

12}, Emilomo Ogbe¹³, Louise Bezuidenhout¹⁴, Michael Morrison⁵, Joel T Minion¹⁵, Madeleine J Murtagh¹⁵, Jusaku Minari¹⁶, Harriet Teare^{5

17}, Rosario Isasi¹⁸, Kazuto Kato¹⁹, Emmanuelle Rial-Sebbag²⁰, Patricia Marshall²¹, Barbara Koenig²², Anne Cambon-Thomsen²³

Affiliations

¹ Centre 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.
² Melbourne Law School, University of Melbourne, 185 Pelham Street, Carlton, Victoria, 3053, Australia. jane.kaye@law.ox.ac.uk.
³ Genetic Alliance USA, 4301 Connecticut Ave NW, Suite 404, Washington DC, 20008-2369, USA.
⁴ Center for Bioethics, University of North Carolina at Chapel Hill, 333 McNider Hall, Chapel Hill, NC, 27599-7240, USA.
⁵ Centre for Health Law and Emerging Technologies, NDPH, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford, OX2 7DD, UK.
⁶ Department of Genetics and Bioinformatics, Norwegian Institute of Public Health, PO Box 4404, Nydalen, 0403, Oslo, Norway.
⁷ Faculty of Law, University of Tasmania, Private Bag 89, Hobart, Tasmania, 7001, Australia.
⁸ School of Law, University of Edinburgh, Old College, South Bridge, Edinburgh, EH8 9YL, UK.
⁹ Cohort Studies, Norwegian Institute of Public Health, PO Box 4404, Nydalen, 0403, Oslo, Norway.
¹⁰ Center for Bioethics and Research, Ibadan, Nigeria.
¹¹ Institute of Human Virology Nigeria, Abuja, Nigeria.
¹² 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.
¹³ International Centre for Reproductive Health, University of Gent, De Pintepark II, De Pintelaan 185, 9000, Ghent, Belgium.
¹⁴ Institute for Science, Innovation and Society, University of Oxford, 64 Banbury Road, Oxford, OX2 6PN, UK.
¹⁵ Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle upon Tyne, NE1 7RU, UK.
¹⁶ 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.
¹⁷ Melbourne Law School, University of Melbourne, 185 Pelham Street, Carlton, Victoria, 3053, Australia.
¹⁸ 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.
¹⁹ Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, Osaka, 565-0871, Japan.
²⁰ National Institute for Research and Health (Inserm), UMR 1027 Inserm, Toulouse University, 37 allées Jules Guesde, 31000, Toulouse, France.
²¹ Department of Bioethics, School of Medicine, TA200, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH, 44106-4976, USA.
²² UCSF School of Nursing, Institute for Health and Aging, University of California, San Francisco, 3333 Calif. St, Laurel Heights, San Francisco, CA, 94118, USA.
²³ 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.

PMID: 29514717
PMCID: PMC5842530
DOI: 10.1186/s40246-018-0143-9

Including all voices in international data-sharing governance

Jane Kaye et al. Hum Genomics. 2018.

. 2018 Mar 7;12(1):13.

doi: 10.1186/s40246-018-0143-9.

Authors

Affiliations

¹ Centre 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.
² Melbourne Law School, University of Melbourne, 185 Pelham Street, Carlton, Victoria, 3053, Australia. jane.kaye@law.ox.ac.uk.
³ Genetic Alliance USA, 4301 Connecticut Ave NW, Suite 404, Washington DC, 20008-2369, USA.
⁴ Center for Bioethics, University of North Carolina at Chapel Hill, 333 McNider Hall, Chapel Hill, NC, 27599-7240, USA.
⁵ Centre for Health Law and Emerging Technologies, NDPH, University of Oxford, Ewert House, Ewert Place, Summertown, Oxford, OX2 7DD, UK.
⁶ Department of Genetics and Bioinformatics, Norwegian Institute of Public Health, PO Box 4404, Nydalen, 0403, Oslo, Norway.
⁷ Faculty of Law, University of Tasmania, Private Bag 89, Hobart, Tasmania, 7001, Australia.
⁸ School of Law, University of Edinburgh, Old College, South Bridge, Edinburgh, EH8 9YL, UK.
⁹ Cohort Studies, Norwegian Institute of Public Health, PO Box 4404, Nydalen, 0403, Oslo, Norway.
¹⁰ Center for Bioethics and Research, Ibadan, Nigeria.
¹¹ Institute of Human Virology Nigeria, Abuja, Nigeria.
¹² 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.
¹³ International Centre for Reproductive Health, University of Gent, De Pintepark II, De Pintelaan 185, 9000, Ghent, Belgium.
¹⁴ Institute for Science, Innovation and Society, University of Oxford, 64 Banbury Road, Oxford, OX2 6PN, UK.
¹⁵ Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, Newcastle upon Tyne, NE1 7RU, UK.
¹⁶ 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.
¹⁷ Melbourne Law School, University of Melbourne, 185 Pelham Street, Carlton, Victoria, 3053, Australia.
¹⁸ 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.
¹⁹ Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, Osaka, 565-0871, Japan.
²⁰ National Institute for Research and Health (Inserm), UMR 1027 Inserm, Toulouse University, 37 allées Jules Guesde, 31000, Toulouse, France.
²¹ Department of Bioethics, School of Medicine, TA200, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH, 44106-4976, USA.
²² UCSF School of Nursing, Institute for Health and Aging, University of California, San Francisco, 3333 Calif. St, Laurel Heights, San Francisco, CA, 94118, USA.
²³ 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.

PMID: 29514717
PMCID: PMC5842530
DOI: 10.1186/s40246-018-0143-9

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.

Keywords: Data sharing; Digital technologies; Governance; Inclusion; International research; Public engagement.

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Ethics approval and consent to participate

No ethics approval or informed consent was necessary. Participants at the workshop were informed that the results from the workshop would be used to write a paper and were invited to contribute to its production.

Consent for publication

N/A

Competing interests

The authors declare that they have no competing interests.

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Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Including all voices in international data-sharing governance

Affiliations

Including all voices in international data-sharing governance

Authors

Affiliations

Abstract

Conflict of interest statement

Ethics approval and consent to participate

Consent for publication

Competing interests

Publisher’s Note

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Conflict of interest statement

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