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    Achieving Procedural Parity in Managing Access to Genomic and Related Health Data: A Global Survey of Data Access Committee Members


    Lawson, Jonathan, Rahimzadeh, Vasiliki, Baek, Jinyoung and Dove, Edward (2024) Achieving Procedural Parity in Managing Access to Genomic and Related Health Data: A Global Survey of Data Access Committee Members. Biopreservation and Biobanking, 22 (2). pp. 123-129. ISSN 1947-5535

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    Abstract

    Data access committees (DACs) are critical players in the data sharing ecosystem. DACs review requests for access to data held in one or more repositories and where specific constraints determine how the data may be used and by whom. Our team surveyed DAC members affiliated with genomic data repositories worldwide to understand standard processes and procedures, operational metrics, bottlenecks, and efficiencies, as well as their perspectives on possible improvements to quality review. We found that DAC operations and systemic issues were common across repositories globally. In general, DAC members endeavored to achieve an appropriate balance of review efficiency, quality, and compliance. Our results suggest a similarly proportionate path forward that helps DACs pursue mutual improvements to efficiency and compliance without sacrificing review quality.
    Item Type: Article
    Keywords: data access; data management; data sharing; data use;
    Academic Unit: Assisting Living & Learning,ALL institute
    Faculty of Social Sciences > Law
    Item ID: 19837
    Identification Number: 10.1089/bio.2022.0205
    Depositing User: Edward Dove
    Date Deposited: 20 May 2025 14:01
    Journal or Publication Title: Biopreservation and Biobanking
    Publisher: Mary Ann Liebert
    Refereed: Yes
    Related URLs:
    URI: https://mural.maynoothuniversity.ie/id/eprint/19837
    Use Licence: This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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