Getting Your DUCs in a Row - Standardising the Representation of Digital Use Conditions
Creators
- Jeanson, Francis1
- Gibson, Spencer2
- Alper, Pinar3
- Bernier, Alexander4
- Woolley, Patrick5
- Mietchen, Daniel6
- Strug, Andrzej7
- Becker, Regina8
- Kamerling, Pim9
- Sanchez Gonzalez, Maria del Carmen10
- Lynne-Mah, Nancy11
- Novakowski, Ann12
- Wilkinson, Mark13
- Benhamed, Oussama13
- Landi, Annalisa14
- Krog, Georg Philip15
- Müller, Heimo16
- Riaz, Umar2
- Veal, Colin2
- Holub, Petr16
- van Enckevort, Esther17
- Brookes, Anthony J.2
- 1. Datadex Inc.
- 2. University of Leicester
- 3. Luxembourg National Data Service
- 4. McGill University
- 5. University of Oxford
- 6. Ronin Institute for Independent Scholarship
- 7. Medical University of Gdańsk
- 8. University of Luxembourg
- 9. VASCERN ERN /Radboud University Medical Center
- 10. Instituto de Salud Carlos III
- 11. Fraunhofer Institute for Biomedical Engineering
- 12. Sage Bionetworks
- 13. Universidad Politécnica de Madrid
- 14. Fondazione Gianni Benzi Onlus
- 15. Signatu AS
- 16. BBMRI-ERIC
- 17. University of Groningen
Description
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 facilitates 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.
This work is the product of a Task Force formed in late 2020 that is jointly hosted by the International Rare Disease Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD).
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Getting Your DUCs in a Row - Standardising the Representation of Digital Use Conditions - Preprint.pdf
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Additional details
References
- 1. 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 (2015). https://doi.org/10.15252/emmm.201405002
- 2. Wilkinson, M. et al. The FAIR Guiding Principles for scientific data management and stewardship. Sci. Data 3, 160018 (2016). https://doi.org/10.1038/sdata.2016.18
- 3. Dyke, S.O.M. et al. Consent Codes: Upholding Standard Data Use Conditions. PLoS Genet. 12(1), p. e1005772 (2016). https://doi.org/10.1371/journal.pgen.1005772
- 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 (2021). https://doi.org/10.1016/j.xgen.2021.100028
- 5. Holub, Petr et al. BBMRI-ERIC directory: 515 biobanks with over 60 million biological samples. Biopreservation and Biobanking 14.6: 559-562 (2016). https://www.liebertpub.com/doi/10.1089/bio.2016.0088
- 6. Lappalainen, I. et al. The European Genome-phenome Archive of human data consented for biomedical research. Nat. Genet. 47, 692–695 (2015). https://doi.org/10.1038/ng.3312
- 7. Lin, Y. et al. Development of a BFO-based Informed Consent Ontology (ICO). Proceedings of the 5th International Conference on Biomedical Ontologies (ICBO), Houston, Texas, USA. October 8-9 2014, pages 84-86 (2014). http://ceur-ws.org/Vol-1327/icbo2014_paper_54.pdf
- 8. Car, N. The Agreements Ontology. (2017). https://github.com/nicholascar/agr-ont. Accessed 2023-02-10.
- 9. 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 (2018). https://doi.org/10.1038/s41525-018-0057-4
- 10. Iannella R. et al. ODRL Vocabulary & Expression 2.2: W3C Recommendation. 15 February (2018). https://www.w3.org/TR/odrl-vocab/. Accessed 12 April 2022.
- 11. Dodds, L. Open Data Rights Statement Vocabulary. (2013). http://schema.theodi.org/odrs. Accessed 2023-01-11
- 12. 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 (2020). https://doi.org/10.1093/gigascience/giz165