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
Preview
ED_achieving.pdf
Available under License Creative Commons Attribution Non-commercial Share Alike.
Download (181kB) | Preview
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 |
Repository Staff Only (login required)
Downloads
Downloads per month over past year