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Common conditions of use elements. Atomic concepts for consistent and effective information governance

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posted on 2024-05-14, 09:57 authored by Maria del Carmen Sanchez Gonzalez, Pim Kamerling, Mariapia Iermito, Sara Casati, Umar Riaz, Colin D Veal, Monika Maini, Francis Jeanson, Oussama Mohammed Benhamed, Esther van Enckevort, Annalisa Landi, Yanis Mimouni, Clèmence Le Cornec, Domenico A Coviello, Tiziana Franchin, Francesca Fusco, Jose Antonio Ramírez García, Loes FM van der Zanden, Alexander Bernier, Mark D Wilkinson, Heimo Mueller, Spencer GibsonSpencer Gibson, Anthony J Brookes

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 Biology

Version

  • VoR (Version of Record)

Published in

Scientific Data

Volume

11

Issue

1

Pagination

465

Publisher

Springer Science and Business Media LLC

eissn

2052-4463

Copyright date

2024

Available date

2024-05-14

Language

en

Deposited by

Dr Spencer Gibson

Deposit date

2024-05-10

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