Controlled Access under Review: Improving the Governance of Genomic Data Access

Mahsa Shabani, Stephanie O M Dyke, Yann Joly and Pascal Borry

PLOS Biology, 2015, vol. 13, issue 12, 1-6

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.This Perspective examines the potentially adverse influence of primary researchers on the openness of genomic data sharing and recommends changes to data access review procedures to mitigate this.

Date: 2015
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Persistent link: https://EconPapers.repec.org/RePEc:plo:pbio00:1002339

DOI: 10.1371/journal.pbio.1002339

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