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  4. Getting your DUCs in a row - standardising the representation of Digital Use Conditions
 
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May 8, 2024
Journal Article
Title

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

Abstract
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.
Author(s)
Jeanson, Francis
Gibson, Spencer J.
Alper, Pinar
Bernier, Alexander
Woolley, J. Patrick
University of Oxford
Mietchen, Daniel
Fraunhofer-Institut für Biomedizinische Technik IBMT  
Strug, Andrzej
Becker, Marcia Regina
University of Luxembourg
Kamerling, Pim
Radboud University Medical Center, Nijmegen, Netherlands.
Gonzalez-Sanchez, Maria del Carmen
Institute for Rare Diseases Research (IIER), Instituto de Salud Carlos III, Madrid, Spain
Mah, Nancy Lynne  orcid-logo
Fraunhofer-Institut für Biomedizinische Technik IBMT  
Novakowski, Ann
Governance Innovation, Sage Bionetworks, Seattle, USA
Wilkinson, Mark D.
Universidad Politécnica de Madrid, Madrid, Spain
Benhamed, Oussama Mohammed
Universidad Politécnica de Madrid, Madrid, Spain
Landi, Annalisa
Research, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, Bari, Italy
Krog, Georg Philip
Legal, Signatu AS, Oslo, Norway
Müller, Heimo
BBMRI-ERIC, Graz, Austria
Riaz Abbasi, Dr Muhammad Umar
University of Leicester UK
Veal, Colin
University of Leicester UK
Holub, Petr
BBMRI-ERIC, Graz, Austria
Enckevort, Esther van
University of Groningen  
Brookes, Anthony J.
University of Leicester UK
Journal
Scientific data  
Open Access
DOI
10.1038/s41597-024-03280-6
Language
English
Fraunhofer-Institut für Biomedizinische Technik IBMT  
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