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

被引:32
作者
Shabani, Mahsa [1 ]
Dyke, Stephanie O. M. [2 ]
Joly, Yann [2 ]
Borry, Pascal [1 ]
机构
[1] Univ Leuven, Dept Publ Hlth & Primary Care, Ctr Biomed Eth & Law, Leuven, Belgium
[2] McGill Univ, Fac Med, Ctr Genom & Policy, Montreal, PQ, Canada
基金
加拿大健康研究院;
关键词
CITATION;
D O I
10.1371/journal.pbio.1002339
中图分类号
Q5 [生物化学]; Q7 [分子生物学];
学科分类号
071010 ; 081704 ;
摘要
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.
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页数:6
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