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审查中的受控访问:改善基因组数据访问治理

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

作者信息

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

机构信息

Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium.

Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, Canada.

出版信息

PLoS Biol. 2015 Dec 31;13(12):e1002339. doi: 10.1371/journal.pbio.1002339. eCollection 2015 Dec.

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.

摘要

在过去十年中,随着大规模基因组数据的产生,数据共享实践迅速扩展。为确保对数据的授权访问,数据访问委员会(DAC)进行的访问审查已被用作一种潜在的解决方案。在此,我们讨论既定和新兴DAC在访问审查架构中应纳入的核心要素,以促进对数据集的公平、高效和负责任的访问。我们特别强调,访问审查过程可能会受到数据生产者潜在利益冲突的不利影响,尤其是当他们直接参与DAC管理时。因此,在构建DAC和访问程序时,应充分关注数据生产者可能的数据保留问题。

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