Consent codes: Maintaining consent in an ever-expanding open science ecosystem

Dyke, Stephanie O. M.; Connor, Kathleen; Nembaware, Victoria; Munung, Nchangwi S.; Reinold, Kathy; Kerry, Giselle; Mbiyavanga, Mamana; Zass, Lyndon; Moldes, Mauricio; Das, Samir; Davis, John M.; Rambla de Argila, Jordi; Spalding, J. Dylan; Evans, Alan C.; Mulder, Nicola; Karamchandani, Jason

doi:http://dx.doi.org/10.1007/s12021-022-09577-4

Consent codes: Maintaining consent in an ever-expanding open science ecosystem

Citation

Dyke SOM, Connor K, Nembaware V, Munung NS, Reinold K, Kerry G, Mbiyavanga M, Zass L, Moldes M, Das S, Davis JM, De Argila JR, Spalding JD, Evans AC, Mulder N, Karamchandani J. Consent codes: Maintaining consent in an ever-expanding open science ecosystem. Neuroinformatics. 2023 Jan;21(1):89-100. DOI: 10.1007/s12021-022-09577-4

Abstract

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.