The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data

Having the means to share research data openly is essential to modern science. For human research, a key aspect in this endeavor is obtaining consent from participants, not just to take part in a study, which is a basic ethical principle, but also to share their data with the scientific community. T...

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Detalles Bibliográficos
Autores: Bannier E, Barker G, Borghesani V, Broeckx N, Clement P, Emblem KE, Ghosh S, Glerean E, Gorgolewski KJ, Havu M, Halchenko YO, Herholz P, Hespel A, Heunis S, Hu Y, Hu CP, Huijser D, de la Iglesia Vayá M, Jancalek R, Katsaros VK, Kieseler ML, Maumet C, Moreau CA, Mutsaerts HJ, Oostenveld R, Ozturk-Isik E, Pascual Leone Espinosa N, Pellman J, Pernet CR, Pizzini FB, Trbalic AŠ, Toussaint PJ, Visconti di Oleggio Castello M, Wang F, Wang C, Zhu H
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2021
País:España
Institución:Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunitat Valenciana (FISABIO)
Repositorio:r-FISABIO. Repositorio Institucional de Producción Científica
OAI Identifier:oai:fisabio.fundanetsuite.com:p8873
Acceso en línea:https://fisabio.portalinvestigacion.com/publicaciones/8873
Access Level:acceso abierto
Palabra clave:brain imaging
general data protection regulation
informed consent
Descripción
Sumario:Having the means to share research data openly is essential to modern science. For human research, a key aspect in this endeavor is obtaining consent from participants, not just to take part in a study, which is a basic ethical principle, but also to share their data with the scientific community. To ensure that the participants' privacy is respected, national and/or supranational regulations and laws are in place. It is, however, not always clear to researchers what the implications of those are, nor how to comply with them. The Open Brain Consent (https://open-brain-consent.readthedocs.io) is an international initiative that aims to provide researchers in the brain imaging community with information about data sharing options and tools. We present here a short history of this project and its latest developments, and share pointers to consent forms, including a template consent form that is compliant with the EU general data protection regulation. We also share pointers to an associated data user agreement that is not only useful in the EU context, but also for any researchers dealing with personal (clinical) data elsewhere.

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