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Including all voices in international data-sharing governance
74
Zitationen
22
Autoren
2018
Jahr
Abstract
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.
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Autoren
- Jane Kaye
- Sharon F. Terry
- Eric T. Juengst
- Sarah Coy
- Jennifer R. Harris
- Drc Chalmers
- Edward S. Dove
- Isabelle Budin‐Ljøsne
- Clement Adebamowo
- Emilomo Ogbe
- Louise Bezuidenhout
- Michael Morrison
- Joel T. Minion
- Madeleine J. Murtagh
- Jusaku Minari
- Harriet Teare
- Rosario Isasi
- Yoshihiro Kato
- Emmanuelle Rial‐Sebbag
- Patricia A. Marshall
- Barbara A. Koenig
- Anne Cambon‐Thomsen
Institutionen
- University of Oxford(GB)
- Genetic Alliance(US)
- University of North Carolina at Chapel Hill(US)
- Norwegian Institute of Public Health(NO)
- University of Tasmania(AU)
- Edinburgh College(GB)
- University of Edinburgh(GB)
- Vince Lombardi Cancer Clinic(US)
- University of Maryland, Baltimore(US)
- Institute of Human Virology(NG)
- University of Ibadan(NG)
- Ghent University Hospital(BE)
- Newcastle University(GB)
- Kyoto University(JP)
- The University of Melbourne(AU)
- University of Miami(US)
- The University of Osaka(JP)
- Institut des Maladies Métaboliques et Cardiovasculaires(FR)
- Inserm(FR)
- Case Western Reserve University(US)
- University of California, San Francisco(US)
- Université Toulouse III - Paul Sabatier(FR)
- Centre National de la Recherche Scientifique(FR)
- Université Fédérale de Toulouse Midi-Pyrénées(FR)