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

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 share...

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Detalles Bibliográficos
Autores: 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
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2023
País:España
Institución:Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)
Repositorio:Recercat. Dipósit de la Recerca de Catalunya
OAI Identifier:oai:recercat.cat:10230/55904
Acceso en línea:http://hdl.handle.net/10230/55904
http://dx.doi.org/10.1007/s12021-022-09577-4
Access Level:acceso abierto
Palabra clave:Consent
Data access
Data management
Data sharing
Ethics
Open science
Descripción
Sumario: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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