Journal
NEUROINFORMATICS
Volume 21, Issue 1, Pages 89-100Publisher
HUMANA PRESS INC
DOI: 10.1007/s12021-022-09577-4
Keywords
Consent; Open science; Ethics; Data access; Data sharing; Data management
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We previously proposed a structure called Consent Codes to record categories and requirements for consent-based data use. In this article, we discuss updates to the Consent Codes (v4) based on new applications, policy developments, and practical considerations, including automated consent management approaches.
We previously proposed a structure for recording consent-based data use 'categories' and 'requirements' - Consent Codes - with a view to supporting maximum use and integration of genomic research datasets, and reducing uncertainty about permissible re-use of shared data. Here we discuss clarifications and subsequent updates to the Consent Codes (v4) based on new areas of application (e.g., the neurosciences, biobanking, H3Africa), policy developments (e.g., return of research results), and further practical considerations, including developments in automated approaches to consent management.
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