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Achieving procedural parity in managing access to genomic and related health data: A global survey of data access committee (DAC) members

  • Jonathan Lawson*
  • , Vasiliki Rahimzadeh
  • , Jinyoung Baek
  • , Edward S. Dove
  • *Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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 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.
Original languageEnglish
JournalBiopreservation and biobanking
Early online date16 May 2023
DOIs
Publication statusE-pub ahead of print - 16 May 2023

Keywords / Materials (for Non-textual outputs)

  • data access
  • data sharing
  • data management
  • data use

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