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

Mostra el registre complet Registre parcial de l'ítem

  • dc.contributor.author Dyke, Stephanie O. M.
  • dc.contributor.author Connor, Kathleen
  • dc.contributor.author Nembaware, Victoria
  • dc.contributor.author Munung, Nchangwi S.
  • dc.contributor.author Reinold, Kathy
  • dc.contributor.author Kerry, Giselle
  • dc.contributor.author Mbiyavanga, Mamana
  • dc.contributor.author Zass, Lyndon
  • dc.contributor.author Moldes, Mauricio
  • dc.contributor.author Das, Samir
  • dc.contributor.author Davis, John M.
  • dc.contributor.author Rambla de Argila, Jordi
  • dc.contributor.author Spalding, J. Dylan
  • dc.contributor.author Evans, Alan C.
  • dc.contributor.author Mulder, Nicola
  • dc.contributor.author Karamchandani, Jason
  • dc.date.accessioned 2023-02-24T07:00:54Z
  • dc.date.available 2023-02-24T07:00:54Z
  • dc.date.issued 2023
  • dc.description.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.
  • dc.description.sponsorship 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.
  • dc.format.mimetype application/pdf
  • dc.identifier.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
  • dc.identifier.doi http://dx.doi.org/10.1007/s12021-022-09577-4
  • dc.identifier.issn 1539-2791
  • dc.identifier.uri http://hdl.handle.net/10230/55904
  • dc.language.iso eng
  • dc.publisher Springer
  • dc.relation.ispartof Neuroinformatics. 2023 Jan;21(1):89-100
  • dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/825775
  • dc.rights © 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/.
  • dc.rights.accessRights info:eu-repo/semantics/openAccess
  • dc.rights.uri http://creativecommons.org/licenses/by/4.0/
  • dc.subject.keyword Consent
  • dc.subject.keyword Data access
  • dc.subject.keyword Data management
  • dc.subject.keyword Data sharing
  • dc.subject.keyword Ethics
  • dc.subject.keyword Open science
  • dc.title Consent codes: Maintaining consent in an ever-expanding open science ecosystem
  • dc.type info:eu-repo/semantics/article
  • dc.type.version info:eu-repo/semantics/publishedVersion

Col·leccions

Articles (Center for Genomic Regulation (CRG))
Articles (Departament de Medicina i Ciències de la Vida)
Documents OpenAIRE (Open Access Infrastructure for Research in Europe)