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

Information Dissemination Humans

Journal

Scientific data

ISSN: 2052-4463

Titre abrégé: Sci Data

Pays: England

ID NLM: 101640192

Informations de publication

Date de publication:
08 May 2024

Historique:

received: 26 06 2023

accepted: 18 04 2024

medline: 9 5 2024

pubmed: 9 5 2024

entrez: 8 5 2024

Statut: epublish

Résumé

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.

Identifiants

DOI: 10.1038/s41597-024-03280-6 PMID: 38719839

pubmed: 38719839

doi: 10.1038/s41597-024-03280-6

pii: 10.1038/s41597-024-03280-6

doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't Research Support, N.I.H., Extramural

Langues

eng

Sous-ensembles de citation

Pagination

464

Subventions

Organisme : EC | EU Framework Programme for Research and Innovation H2020 | H2020 Priority Societal Challenges | H2020 Health (H2020 Societal Challenges - Health, Demographic Change and Well-being)

ID : 825575

Informations de copyright

Références

Shabani, M., Knoppers, B. M. & Borry, P. From the principles of genomic data sharing to the practices of data access committees. Embo. Mol. Med. 7, 507–509, https://doi.org/10.15252/emmm.201405002 (2015).

doi: 10.15252/emmm.201405002 pubmed: 25759363 pmcid: 4492813

Wilkinson, M. et al. The FAIR guiding principles for scientific data management and stewardship. Sci. Data. 3, 160018, https://doi.org/10.1038/sdata.2016.18 (2016).

doi: 10.1038/sdata.2016.18 pubmed: 26978244 pmcid: 4792175

Dyke, S. O. M. et al. Consent Codes: upholding standard data use conditions. PLoS Genet. 12(1), e1005772, https://doi.org/10.1371/journal.pgen.1005772 (2016).

doi: 10.1371/journal.pgen.1005772 pubmed: 26796797 pmcid: 4721915

Dyke, S. O. M. et al. Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem. Neuroinform. 21, 89–100, https://doi.org/10.1007/s12021-022-09577-4 (2023).

doi: 10.1007/s12021-022-09577-4

Lawson, J. et al. The Data Use Ontology to streamline responsible access to human biomedical datasets. Cell Genomics. 1, 2, 100028, ISSN 2666-979X, https://doi.org/10.1016/j.xgen.2021.100028 (2021).

Holub, P. et al. BBMRI-ERIC directory: 515 biobanks with over 60 million biological samples. Biopreservation and Biobanking. 14(6), 559–562, https://www.liebertpub.com/doi/10.1089/bio.2016.0088 (2016).

doi: 10.1089/bio.2016.0088 pubmed: 27936342 pmcid: 5180080

Lappalainen, I. et al. The European Genome-phenome Archive of human data consented for biomedical research. Nat. Genet. 47, 692–695, https://doi.org/10.1038/ng.3312 (2015).

doi: 10.1038/ng.3312 pubmed: 26111507 pmcid: 5426533

Lin, Y. et al. Development of a BFO-based Informed Consent Ontology (ICO). Proc. of the 5th Intern. Conf. on Biomedical Ontologies (ICBO) http://ceur-ws.org/Vol-1327/icbo2014_paper_54.pdf (2014).

Car, N. The agreements ontology https://github.com/nicholascar/agr-ont (2017).

Woolley, J. P. et al. Responsible sharing of biomedical data and biospecimens via the “Automatable Discovery and Access Matrix” (ADA-M). npj Genomic Med. 3, 17, 1–6, https://doi.org/10.1038/s41525-018-0057-4 (2018).

doi: 10.1038/s41525-018-0057-4

Iannella, R. et al. ODRL vocabulary & expression 2.2: W3C recommendation. https://www.w3.org/TR/odrl-vocab/ (2018).

Dodds, L. Open data rights statement vocabulary. http://schema.theodi.org/odrs (2013).

Alter, G., Gonzalez-Beltran, A., Ohno-Machado, L. & Rocca-Serra, P. The Data Tags Suite (DATS) model for discovering data access and use requirements. GigaScience. 9(2), giz165, https://doi.org/10.1093/gigascience/giz165 (2020).

doi: 10.1093/gigascience/giz165 pubmed: 32031623 pmcid: 7006671

Pezoa, F., Reutter, J. L., Suarez, F., Ugarte, M. & Vrgoc, D. Foundations of JSON schema. Proc. 25th International Conference on World Wide Web 263–273 https://doi.org/10.1145/2872427.2883029 (2016).

Sanchez Gonzalez, M. C. et al. Common conditions of use elements. Atomic concepts for consistent and effective information governance. Sci. Data. https://doi.org/10.1038/s41597-024-03279-z (2024).