Journal article

Including All Voices in International Data-Sharing Governance

Jane Kaye, Sharon F Terry, Eric Juengst, Sarah Coy, Jennifer R Harris, Don Chalmers, Edward S Dove, Isabelle Budin-Ljosne, Clement Adebamowo, Emilomo Ogbe, Louise Bezuidenhout, Michael Morrison, Joel T Minion, Madeleine J Murtagh, Jusaku Minari, Harriet Teare, Rosario Isasi, Kazuto Kato, Emmanuelle Rial-Sebbag, Patricia Marshall Show all

Human Genomics | BioMed Central | Published : 2018

Abstract

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.

University of Melbourne Researchers

Grants

Awarded by Wellcome Trust


Awarded by European Union


Awarded by UNC Center for Genomics and Society, NIH


Awarded by Research Council of Norway


Awarded by NIH


Awarded by Leverhulme Trust


Awarded by University of Gent BOF startkrediet


Awarded by RISTEX, Japan Science and Technology Agency (JST), JSPS


Awarded by JSPS Challenging Research (Exploratory)


Awarded by JSPS


Funding Acknowledgements

The 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-Ljosne: 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.