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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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
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spelling Consent codes: Maintaining consent in an ever-expanding open science ecosystemDyke, Stephanie O. M.Connor, KathleenNembaware, VictoriaMunung, Nchangwi S.Reinold, KathyKerry, GiselleMbiyavanga, MamanaZass, LyndonMoldes, MauricioDas, SamirDavis, John M.Rambla de Argila, JordiSpalding, J. DylanEvans, Alan C.Mulder, NicolaKaramchandani, JasonConsentData accessData managementData sharingEthicsOpen scienceWe 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.SOMD, SD, ACE and JK were supported by The Neuro Tanenbaum Open Science Institute, the Canadian Open Neuroscience Platform (funded in part by Brain Canada), and McGill Healthy Brains for Healthy Lives. NM and LZ are funded by the NIH under grant number U24HG006941. MM is funded by EUH2020 CINECA grant number 825775. NM, VN and NSM are funded by the NHLBI award number U24HL135600. JDS and GK are funded by the Wellcome Trust grant 360G-Wellcome-201535_Z_16_Z and previously the EU H2020 Corbel grant number 645248.Springer202320232023info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfapplication/pdfhttp://hdl.handle.net/10230/55904http://dx.doi.org/10.1007/s12021-022-09577-4reponame:Recercat. Dipósit de la Recerca de Catalunyainstname:Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)InglésNeuroinformatics. 2023 Jan;21(1):89-100info:eu-repo/grantAgreement/EC/H2020/825775© The Author(s) 2022. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.http://creativecommons.org/licenses/by/4.0/info:eu-repo/semantics/openAccessoai:recercat.cat:10230/559042026-05-29T05:05:01Z
dc.title.none.fl_str_mv Consent codes: Maintaining consent in an ever-expanding open science ecosystem
title Consent codes: Maintaining consent in an ever-expanding open science ecosystem
spellingShingle Consent codes: Maintaining consent in an ever-expanding open science ecosystem
Dyke, Stephanie O. M.
Consent
Data access
Data management
Data sharing
Ethics
Open science
title_short Consent codes: Maintaining consent in an ever-expanding open science ecosystem
title_full Consent codes: Maintaining consent in an ever-expanding open science ecosystem
title_fullStr Consent codes: Maintaining consent in an ever-expanding open science ecosystem
title_full_unstemmed Consent codes: Maintaining consent in an ever-expanding open science ecosystem
title_sort Consent codes: Maintaining consent in an ever-expanding open science ecosystem
dc.creator.none.fl_str_mv 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
author Dyke, Stephanie O. M.
author_facet 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
author_role author
author2 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
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.subject.none.fl_str_mv Consent
Data access
Data management
Data sharing
Ethics
Open science
topic Consent
Data access
Data management
Data sharing
Ethics
Open science
description 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.
publishDate 2023
dc.date.none.fl_str_mv 2023
2023
2023
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv http://hdl.handle.net/10230/55904
http://dx.doi.org/10.1007/s12021-022-09577-4
url http://hdl.handle.net/10230/55904
http://dx.doi.org/10.1007/s12021-022-09577-4
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv Neuroinformatics. 2023 Jan;21(1):89-100
info:eu-repo/grantAgreement/EC/H2020/825775
dc.rights.none.fl_str_mv http://creativecommons.org/licenses/by/4.0/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv http://creativecommons.org/licenses/by/4.0/
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
application/pdf
dc.publisher.none.fl_str_mv Springer
publisher.none.fl_str_mv Springer
dc.source.none.fl_str_mv reponame:Recercat. Dipósit de la Recerca de Catalunya
instname:Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)
instname_str Varias* (Consorci de Biblioteques Universitáries de Catalunya, Centre de Serveis Científics i Acadèmics de Catalunya)
reponame_str Recercat. Dipósit de la Recerca de Catalunya
collection Recercat. Dipósit de la Recerca de Catalunya
repository.name.fl_str_mv
repository.mail.fl_str_mv
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