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Getting your DUCs in a row - standardising the representation of Digital Use Conditions

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posted on 2024-05-14, 09:57 authored by Francis Jeanson, Spencer GibsonSpencer Gibson, Pinar Alper, Alexander Bernier, J Patrick Woolley, Daniel Mietchen, Andrzej Strug, Regina Becker, Pim Kamerling, Maria del Carmen Sanchez Gonzalez, Nancy Mah, Ann Novakowski, Mark D Wilkinson, Oussama Mohammed Benhamed, Annalisa Landi, Georg Philip Krog, Heimo Müller, Umar Riaz, Colin Veal, Petr Holub, Esther van Enckevort, Anthony J Brookes

Improving patient care and advancing scientific discovery requires responsible sharing of research data, healthcare records, biosamples, and biomedical resources that must also respect applicable use conditions. Defining a standard to structure and manage these use conditions is a complex and challenging task. This is exemplified by a near unlimited range of asset types, a high variability of applicable conditions, and differing applications at the individual or collective level. Furthermore, the specifics and granularity required are likely to vary depending on the ultimate contexts of use. All these factors confound alignment of institutional missions, funding objectives, regulatory and technical requirements to facilitate effective sharing. The presented work highlights the complexity and diversity of the problem, reviews the current state of the art, and emphasises the need for a flexible and adaptable approach. We propose Digital Use Conditions (DUC) as a framework that addresses these needs by leveraging existing standards, striking a balance between expressiveness versus ambiguity, and considering the breadth of applicable information with their context 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

464

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

Rights Retention Statement

  • No

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