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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 shared data. Here we discuss clarificatio...

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Autores principales: 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., De Argila, Jordi Rambla, Spalding, J. Dylan, Evans, Alan C., Mulder, Nicola, Karamchandani, Jason
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer US 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9931855/
https://www.ncbi.nlm.nih.gov/pubmed/36520344
http://dx.doi.org/10.1007/s12021-022-09577-4
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author 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.
De Argila, Jordi Rambla
Spalding, J. Dylan
Evans, Alan C.
Mulder, Nicola
Karamchandani, Jason
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.
De Argila, Jordi Rambla
Spalding, J. Dylan
Evans, Alan C.
Mulder, Nicola
Karamchandani, Jason
author_sort Dyke, Stephanie O. M.
collection PubMed
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.
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spelling pubmed-99318552023-02-17 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. De Argila, Jordi Rambla Spalding, J. Dylan Evans, Alan C. Mulder, Nicola Karamchandani, Jason Neuroinformatics Article 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. Springer US 2022-12-15 2023 /pmc/articles/PMC9931855/ /pubmed/36520344 http://dx.doi.org/10.1007/s12021-022-09577-4 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis 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/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Article
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.
De Argila, Jordi Rambla
Spalding, J. Dylan
Evans, Alan C.
Mulder, Nicola
Karamchandani, Jason
Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem
title 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_short Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem
title_sort consent codes: maintaining consent in an ever-expanding open science ecosystem
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9931855/
https://www.ncbi.nlm.nih.gov/pubmed/36520344
http://dx.doi.org/10.1007/s12021-022-09577-4
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