Center for Medical Ethics and Health Policy Staff Publications
Language
English
Publication Date
4-1-2024
Journal
Biopreservation and Biobanking
DOI
10.1089/bio.2022.0205
PMID
37192473
PMCID
PMC11265613
PubMedCentral® Posted Date
4-15-2024
PubMedCentral® Full Text Version
Post-print
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.
Keywords
Committee Membership, Genome, Genomics, Surveys and Questionnaires, data access, data sharing, data management, data use
Published Open-Access
yes
Recommended Citation
Lawson, Jonathan; Rahimzadeh, Vasiliki; Baek, Jinyoung; et al., "Achieving Procedural Parity in Managing Access to Genomic and Related Health Data: A Global Survey of Data Access Committee Members" (2024). Center for Medical Ethics and Health Policy Staff Publications. 328.
https://digitalcommons.library.tmc.edu/med_ethics/328