Common conditions of use elements. Atomic concepts for consistent and effective information governance
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2024-05-08
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dig-inia-es-10261-3577212024-05-21T20:37:13Z Common conditions of use elements. Atomic concepts for consistent and effective information governance Sanchez Gonzalez, Maria Del Carmen Kamerling, Pim Iermito, Mariapia Casati, Sara Riaz, Umar Veal, Colin Maini, Monika Jeanson, Francis Benhamed, M. van Enckevort, Esther Landi, Annalisa Mimouni, Yanis Le Cornec, Clémence M. A. Coviello, Domenico Franchin, Tiziana Fusco, Francesca Ramírez García, Jose Antonio van der Zanden, Loes Bernier, Alexander Wilkinson, Mark D. Mueller, Heimo Gibson, Spencer Brookes, Anthony European Commission Sanchez Gonzalez, Maria Del Carmen [0000-0002-8523-9218] Kamerling, Pim [0009-0007-3897-0466] Casati, Sara [0000-0002-5049-7321] Riaz, Umar [0009-0002-2265-8770] Veal, Colin [0000-0002-9840-2512] Jeanson, Francis [0000-0001-6085-2967] Benhamed, M. [0000-0002-2567-1914] van Enckevort, Esther [0000-0002-2440-3993] Landi, Annalisa [0000-0001-9368-6424] Mimouni, Yanis [0000-0002-7527-524X] Coviello, Domenico [0000-0001-8440-865X] Franchin, Tiziana [0000-0003-2745-0733] Fusco, Francesca [0000-0002-7578-6058] van der Zanden, Loes [0000-0003-3914-7491] Wilkinson, Mark D. [0000-0001-6960-357X] Mueller, Heimo [0000-0002-9691-4872] Gibson, Spencer [0000-0003-0768-1542] Brookes, Anthony [0000-0001-8686-0017] 9 Pág. Myriad policy, ethical and legal considerations underpin the sharing of biological resources, implying the need for standardised and yet flexible ways to digitally represent diverse 'use conditions'. We report a core lexicon of terms that are atomic, non-directional 'concepts of use', called Common Conditions of use Elements. This work engaged biobanks and registries relevant to the European Joint Programme for Rare Diseases and aimed to produce a lexicon that would have generalised utility. Seventy-six concepts were initially identified from diverse real-world settings, and via iterative rounds of deliberation and user-testing these were optimised and condensed down to 20 items. To validate utility, support software and training information was provided to biobanks and registries who were asked to create Sharing Policy Profiles. This succeeded and involved adding standardised directionality and scope annotations to the employed terms. The addition of free-text parameters was also explored. The approach is now being adopted by several real-world projects, enabling this standard to evolve progressively into a universal basis for representing and managing conditions of use. The authors wish to thank Lotte Boormans (ERN eUROGEN) and Nawel Lalout (World Duchenne Organization) for piloting CCE terms along with DUC software. We also thank the developers of the Digital Use Conditions (DUC) structure and members of the IRDiRC ‘Machine Readable Consent and Use Conditions’ Task Force (https://irdirc.org/machine-readable-consent-and-use-conditions/) for providing project oversight and utility testing of CCEs. Finally, we acknowledge and thank the ‘European Joint Programme on Rare Diseases’ for funding this work as part of the EU Horizon 2020 programme, Grant Agreement N°825575, which contributed to the development work, supported publication costs, and resourced the IRDiRC Scientific Secretariat which is hosted at INSERM in Paris, France. Peer reviewed 2024-05-21T09:54:47Z 2024-05-21T09:54:47Z 2024-05-08 artículo Scientific Data 11: e465 (2024) http://hdl.handle.net/10261/357721 10.1038/s41597-024-03279-z 2052-4463 38719810 2-s2.0-85192374604 https://api.elsevier.com/content/abstract/scopus_id/85192374604 en #PLACEHOLDER_PARENT_METADATA_VALUE# info:eu-repo/grantAgreement/EC/H2020/825575 Centro de Biotecnología y Genómica de Plantas (CBGP) Publisher's version https://doi.org/10.1038/s41597-024-03279-z Sí open application/pdf Nature Publishing Group |
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9 Pág. |
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European Commission |
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European Commission Sanchez Gonzalez, Maria Del Carmen Kamerling, Pim Iermito, Mariapia Casati, Sara Riaz, Umar Veal, Colin Maini, Monika Jeanson, Francis Benhamed, M. van Enckevort, Esther Landi, Annalisa Mimouni, Yanis Le Cornec, Clémence M. A. Coviello, Domenico Franchin, Tiziana Fusco, Francesca Ramírez García, Jose Antonio van der Zanden, Loes Bernier, Alexander Wilkinson, Mark D. Mueller, Heimo Gibson, Spencer Brookes, Anthony |
| format |
artículo |
| author |
Sanchez Gonzalez, Maria Del Carmen Kamerling, Pim Iermito, Mariapia Casati, Sara Riaz, Umar Veal, Colin Maini, Monika Jeanson, Francis Benhamed, M. van Enckevort, Esther Landi, Annalisa Mimouni, Yanis Le Cornec, Clémence M. A. Coviello, Domenico Franchin, Tiziana Fusco, Francesca Ramírez García, Jose Antonio van der Zanden, Loes Bernier, Alexander Wilkinson, Mark D. Mueller, Heimo Gibson, Spencer Brookes, Anthony |
| spellingShingle |
Sanchez Gonzalez, Maria Del Carmen Kamerling, Pim Iermito, Mariapia Casati, Sara Riaz, Umar Veal, Colin Maini, Monika Jeanson, Francis Benhamed, M. van Enckevort, Esther Landi, Annalisa Mimouni, Yanis Le Cornec, Clémence M. A. Coviello, Domenico Franchin, Tiziana Fusco, Francesca Ramírez García, Jose Antonio van der Zanden, Loes Bernier, Alexander Wilkinson, Mark D. Mueller, Heimo Gibson, Spencer Brookes, Anthony Common conditions of use elements. Atomic concepts for consistent and effective information governance |
| author_sort |
Sanchez Gonzalez, Maria Del Carmen |
| title |
Common conditions of use elements. Atomic concepts for consistent and effective information governance |
| title_short |
Common conditions of use elements. Atomic concepts for consistent and effective information governance |
| title_full |
Common conditions of use elements. Atomic concepts for consistent and effective information governance |
| title_fullStr |
Common conditions of use elements. Atomic concepts for consistent and effective information governance |
| title_full_unstemmed |
Common conditions of use elements. Atomic concepts for consistent and effective information governance |
| title_sort |
common conditions of use elements. atomic concepts for consistent and effective information governance |
| publisher |
Nature Publishing Group |
| publishDate |
2024-05-08 |
| url |
http://hdl.handle.net/10261/357721 https://api.elsevier.com/content/abstract/scopus_id/85192374604 |
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