Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem

Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem
Stephanie O. M. Dyke, Kathleen Connor, Victoria Nembaware, Nchangwi S. Munung, Kathy Reinold, Giselle Kerry, Mamana Mbiyavanga, Lyndon Zass, Mauricio Moldes, Samir Das, John M. Davis, Jordi Rambla De Argila, J. Dylan Spalding, Alan C. Evans, Nicola Mulder, Jason Karamchandani
Neuroinformatics, 15 December 2022
Open Access
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.