Common conditions of use elements. Atomic concepts for consistent and effective information governance
Myriad policy, ethical and legal considerations underpin the sharing of biological resources, implying the need for standardised and yet flexible ways to digitally represent diverse ‘use conditions’. We report a core lexicon of terms that are atomic, non-directional ‘concepts of use’, called Common Conditions of use Elements. This work engaged biobanks and registries relevant to the European Joint Programme for Rare Diseases and aimed to produce a lexicon that would have generalised utility. Seventy-six concepts were initially identified from diverse real-world settings, and via iterative rounds of deliberation and user-testing these were optimised and condensed down to 20 items. To validate utility, support software and training information was provided to biobanks and registries who were asked to create Sharing Policy Profiles. This succeeded and involved adding standardised directionality and scope annotations to the employed terms. The addition of free-text parameters was also explored. The approach is now being adopted by several real-world projects, enabling this standard to evolve progressively into a universal basis for representing and managing conditions of use.
History
Author affiliation
College of Life Sciences/Genetics & Genome BiologyVersion
- VoR (Version of Record)
Published in
Scientific DataVolume
11Issue
1Pagination
465Publisher
Springer Science and Business Media LLCeissn
2052-4463Copyright date
2024Available date
2024-05-14Publisher DOI
Language
enPublisher version
Deposited by
Dr Spencer GibsonDeposit date
2024-05-10Rights Retention Statement
- No