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

Autor: Jeanson F; Centre for Analytics, Ontario Brain Institute, Toronto, Canada. fjeanson@braininstitute.ca., Gibson SJ; Genetics and Genome Biology, University of Leicester, Leicester, UK., Alper P; Luxembourg National Data Service, Esch-sur-Alzette, Luxembourg., Bernier A; Faculty of Medicine and Health Sciences, McGill University, Montreal, Canada., Woolley JP; Nuffield Department of Population Health, University of Oxford, Oxford, UK., Mietchen D; Ronin Institute for Independent Scholarship, Montclair, USA., Strug A; Medical Laboratory Diagnostics Department, Medical University of Gdańsk, Gdańsk, Poland., Becker R; University of Luxembourg, Esch-sur-Alzette, Luxembourg., Kamerling P; Center for Radiology and Nuclear Medicine, VASCERN ERN /Radboud University Medical Center, Nijmegen, Netherlands., Sanchez Gonzalez MDC; Institute for Rare Diseases Research (IIER), Instituto de Salud Carlos III, Madrid, Spain., Mah N; Biomedical Data & Bioethics Group, Fraunhofer Institute for Biomedical Engineering, Sulzbach/Saar, Germany., Novakowski A; Governance Innovation, Sage Bionetworks, Seattle, USA., Wilkinson MD; Departamento de Biotecnología-Biología Vegetal, ETSI Agronómica, Alimentaria y de Biosistemas, Centro de Biotecnología y Genómica de Plantas (CBGP, UPM-INIA/CSIC), Universidad Politécnica de Madrid, Madrid, Spain., Benhamed OM; Departamento de Biotecnología-Biología Vegetal, ETSI Agronómica, Alimentaria y de Biosistemas, Centro de Biotecnología y Genómica de Plantas (CBGP, UPM-INIA/CSIC), Universidad Politécnica de Madrid, Madrid, Spain., Landi A; Research, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, Bari, Italy., Krog GP; Legal, Signatu AS, Oslo, Norway., Müller H; BBMRI-ERIC, Graz, Austria., Riaz U; Genetics and Genome Biology, University of Leicester, Leicester, UK., Veal C; Genetics and Genome Biology, University of Leicester, Leicester, UK., Holub P; BBMRI-ERIC, Graz, Austria.; Institute of Computer Science, Masaryk University, Brno, Czechia., van Enckevort E; University of Groningen, Groningen, Netherlands.; Department of Genetics, University Medical Center Groningen, Groningen, Netherlands., Brookes AJ; Genetics and Genome Biology, University of Leicester, Leicester, UK.
Jazyk: angličtina
Zdroj: Scientific data [Sci Data] 2024 May 08; Vol. 11 (1), pp. 464. Date of Electronic Publication: 2024 May 08.
DOI: 10.1038/s41597-024-03280-6
Abstrakt: 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.
(© 2024. The Author(s).)
Databáze: MEDLINE
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