Common Conditions of Use Elements. Atomic Concepts for Consistent and Effective Information Governance.

Le résumé fourni par la source

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 herein report a core taxonomy of atomic, non-directional 'concepts of use', called Common Conditions of Use Elements (CCE). This work engaged biobanks and registries relevant to the European Joint Programme for Rare Disease (EJP-RD) and aimed to produce a taxonomy 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 employed CCEs. The addition of free-text parameters was also explored. The CCE 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.

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