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

Elise Bannier, Gareth Barker, Valentina Borghesani, Nils Broeckx, Patricia Clement, Kyrre E. Emblem, Satrajit Ghosh, Enrico Glerean, Krzysztof J. Gorgolewski, Marko Havu, Yaroslav O. Halchenko*, Peer Herholz*, Anne Hespel, Stephan Heunis*, Yue Hu, Chuan-Peng Hu, Dorien Huijser, María de la Iglesia Vayá, Radim Jancalek, Vasileios K. KatsarosMarie-Luise Kieseler, Camille Maumet, Clara A. Moreau, Henk-Jan Mutsaerts, Robert Oostenveld, Esin Ozturk-Isik, Nicolas Pascual Leone Espinosa, John Pellman, Cyril R. Pernet*, Francesca Benedetta Pizzini, Amira Šerifović Trbalić, Paule-Joanne Toussaint, Matteo Visconti di Oleggio Castello, Fengjuan Wang, Cheng Wang, Hua Zhu

*Corresponding author for this work

Research output: Contribution to journalEditorialAcademicpeer-review

Abstract

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.
Original languageEnglish
Pages (from-to)1945-1951
Number of pages7
JournalHuman Brain Mapping
Volume42
Issue number7
DOIs
Publication statusPublished - 1 May 2021

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