Data sharing policy design for consortia: challenges for sustainability
AuthorKaye, J; Hawkins, N
Source TitleGenome Medicine: medicine in the post-genomic era
University of Melbourne Author/sKaye, Jane
AffiliationMelbourne Law School
Document TypeJournal Article
CitationsKaye, J. & Hawkins, N. (2014). Data sharing policy design for consortia: challenges for sustainability. GENOME MEDICINE, 6 (1), https://doi.org/10.1186/gm523.
Access StatusOpen Access
The field of human genomics has led advances in the sharing of data with a view to facilitating translation of research into innovations for human health. This change in scientific practice has been implemented through new policy developed by many principal investigators, project managers and funders, which has ultimately led to new forms of practice and innovative governance models for data sharing. Here, we examine the development of the governance of data sharing in genomics, and explore some of the key challenges associated with the design and implementation of these policies. We examine how the incremental nature of policy design, the perennial problem of consent, the gridlock caused by multiple and overlapping access systems, the administrative burden and the problems with incentives and acknowledgment all have an impact on the potential for data sharing to be maximized. We conclude by proposing ways in which the scientific community can address these problems, to improve the sustainability of data sharing into the future.
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