Title: Controlled Access under Review: Improving the Governance of Genomic Data Access
Authors: Shabani, Mahsa ×
Dyke, Stephanie O M
Joly, Yann
Borry, Pascal #
Issue Date: Dec-2015
Publisher: Public Library of Science
Series Title: PLoS Biology vol:13 issue:12 pages:e1002339
Article number: 10.1371/journal.pbio.1002339
Abstract: In parallel with massive genomic data production, data sharing practices have rapidly expanded over the last decade. To ensure authorized access to data, access review by data access committees (DACs) has been utilized as one potential solution. Here we discuss core elements to be integrated into the fabric of access review by both established and emerging DACs in order to foster fair, efficient, and responsible access to datasets. We particularly highlight the fact that the access review process could be adversely influenced by the potential conflicts of interest of data producers, particularly when they are directly involved in DACs management. Therefore, in structuring DACs and access procedures, possible data withholding by data producers should receive thorough attention.
ISSN: 1545-7885
Publication status: published
KU Leuven publication type: IT
Appears in Collections:Interfaculty Centre for Biomedial Ethics and Law
× corresponding author
# (joint) last author

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