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https://doi.org/10.1038/s41597...
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Common conditions of use elements. Atomic concepts for consistent and effective information governance

Authors: Maria del Carmen Sanchez Gonzalez; Pim Kamerling; Mariapia Iermito; Sara Casati; Umar Riaz; Colin D. Veal; Monika Maini; +16 Authors

Common conditions of use elements. Atomic concepts for consistent and effective information governance

Abstract

AbstractMyriad 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.

Countries
Italy, Spain, Netherlands
Keywords

Ethics, Governance, Information Dissemination, Science, Q, metadata, CCE, biobank, Article, Bioresource, Use Conditions, Medical Imaging - Radboud University Medical Center, IQ health - Radboud University Medical Center, Urology - Radboud University Medical Center, Humans, Registries, Common Condition of use Elements, Biological Specimen Banks

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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
views
OpenAIRE UsageCountsViews provided by UsageCounts
downloads
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2
Top 10%
Average
Average
132
111
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hybrid