Data sharing policy design for consortia: challenges for sustainability
Jane Kaye, Naomi Hawkins
Genome Medicine: medicine in the post-genomic era | BMC | Published : 2014
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..View full abstract
Awarded by Wellcome Trust
We thank Heather Griffin and Michael Morrison for their help in preparing this manuscript for publication. JK is funded under Wellcome Trust Award 096599/2/11/Z and the EU F7 project BIOSHARE.