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AbstractBackground: 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. Copyright The Author(s). 2018.
SponsorsThe workshop that lead to this publication was generously supported by the Brocher Fondation, Route d’Hermance 471, CP 21 CH-1248 Hermance, Switzerland Grant 2013 “The Governance of International Consortia – Establishing A Proof of Principle for ELSI 2.0,” awarded to Jane Kaye, Bartha Knoppers, and Anne Cambon-Thomsen. Bartha Knoppers was unable to attend the final workshop. Jane Kaye: Wellcome Trust Award 096599/2/11/Z; Innovative Medicines Initiative Joint Undertaking under grant agreement number 115317 (DIRECT), resources of which are composed of financial contribution from the European Union’s Seventh Framework Programme (FP7/2007–2013) and EFPIA companies’ in kind contribution. Eric Juengst: UNC Center for Genomics and Society, NIH grant #P50HG004488. Isabelle Budin-Ljøsne: Biobank Norway funded by the Research Council of Norway—grant number 245464. Clement Adebayo Adebamowo: NIH grant # 1U01HG007654 and R25TW01514. Louise Bezuidenhout: Leverhulme Trust (Beyond the Digital Divide (RPG-2013-153). Emilomo Ogbe: University of Gent BOF startkrediet (BOF.STA.2016.0031.01). Jusaku Minari: This research is partially supported by RISTEX, Japan Science and Technology Agency (JST), JSPS Grant-in-Aid for Young Scientists (B) (15K19149) and JSPS Challenging Research (Exploratory, 17K19812). Kazuto Kato: Grant-in-Aid for Scientific Research (16H06279, 17K19812) by JSPS and the LeadER research program on ELSI of genomic medicine by the AMED (The Japan Agency for Medical Research and Development), Japan. Sarah Coy and Michael Morrison: Innovative Medicines Initiative Joint Undertaking under grant agreement number 115439 (StemBANCC), resources of which are composed of financial contribution from the European Union’s Seventh Framework Programme (FP7/2007–2013) and European Federation of Pharmaceutical Industries and Associations (EFPIA) companies’ in kind contribution. Harriet Teare: Innovative Medicines Initiative Joint Undertaking under grant agreement number 115317 (DIRECT), resources of which are composed of financial contribution from the European Union’s Seventh Framework Programme (FP7/2007–2013) and EFPIA companies’ in kind contribution.
Identifier to cite or link to this itemhttps://www.scopus.com/inward/record.uri?eid=2-s2.0-85054512218&doi=10.1186%2fs40246-018-0143-9&partnerID=40&md5=a0ded4b410077789f32a31785fde1ad0; http://hdl.handle.net/10713/9736