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Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
biochemistry, genetics and molecular biology
Including all voices in international datasharing governance
Human Genomics, Volume 12, No. 1, Article 13, Year 2018
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Description
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 decisionmaking. 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. © The Author(s). 2018.
Authors & Co-Authors
Kaye, Jane S.
United Kingdom, Oxford
University of Oxford
Australia, Melbourne
University of Melbourne
Terry, Sharon
United States, Washington
Genetic Alliance
Juengst, Eric T.
United States, Chapel Hill
The University of North Carolina at Chapel Hill
Coy, Sarah E.
United Kingdom, Oxford
University of Oxford
Harris, Jennifer Ruth
Norway, Oslo
Folkehelseinstituttet
Chalmers, Don R.C.
Australia, Hobart
University of Tasmania
Dove, Edward S.
United Kingdom, Edinburgh
The University of Edinburgh
Budin-Ljøsne, Isabelle
Norway, Oslo
Folkehelseinstituttet
Adebamowo, Clement
Nigeria, Ibadan
Center for Bioethics and Research
Nigeria, Abuja
Institute of Human Virology - Nigeria
United States, Baltimore
The Sidney Kimmel Comprehensive Cancer Center
Ogbe, Emilomo
Belgium, Ghent
Universiteit Gent
Bezuidenhout, Louise M.
United Kingdom, Oxford
University of Oxford
Morrison, Michael
United Kingdom, Oxford
University of Oxford
Minion, Joel T.
United Kingdom, Newcastle
Newcastle University
Murtagh, Madeleine J.
United Kingdom, Newcastle
Newcastle University
Minari, Jusaku
Japan, Kyoto
Kyoto University
Teare, Harriet J.A.
United Kingdom, Oxford
University of Oxford
Australia, Melbourne
University of Melbourne
Isasi, Rosario M.
United States, Coral Gables
University of Miami
Kato, Kazuto
Japan, Suita
Graduate School of Medicine
Rial-Sebbag, Emmanuelle
France, Toulouse
Cerpop - Centre D'epidémiologie et de Recherche en Santé Des Populations
Marshall, Patricia A.
United States, Cleveland
Case Western Reserve University
Koenig, Barbara Ann
United States, San Francisco
University of California, San Francisco
Cambon-Thomsen, Anne
France, Paris
Inserm
Statistics
Citations: 46
Authors: 22
Affiliations: 19
Identifiers
Doi:
10.1186/s40246-018-0143-9
ISSN:
14739542
Research Areas
Health System And Policy