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

• Published in: Human brain mapping Vol. 42; no. 7; pp. 1945 - 1951
• Main Authors: Bannier, Elise, Barker, Gareth, Borghesani, Valentina, Broeckx, Nils, Clement, Patricia, Emblem, Kyrre E., Ghosh, Satrajit, Glerean, Enrico, Gorgolewski, Krzysztof J., Havu, Marko, Halchenko, Yaroslav O., Herholz, Peer, Hespel, Anne, Heunis, Stephan, Hu, Yue, Hu, Chuan‐Peng, Huijser, Dorien, Iglesia Vayá, María, Jancalek, Radim, Katsaros, Vasileios K., Kieseler, Marie‐Luise, Maumet, Camille, Moreau, Clara A., Mutsaerts, Henk‐Jan, Oostenveld, Robert, Ozturk‐Isik, Esin, Pascual Leone Espinosa, Nicolas, Pellman, John, Pernet, Cyril R, Pizzini, Francesca Benedetta, Trbalić, Amira Šerifović, Toussaint, Paule‐Joanne, Visconti di Oleggio Castello, Matteo, Wang, Fengjuan, Wang, Cheng, Zhu, Hua
• Format: Journal Article
• Language: English
• Published: Hoboken, USA John Wiley & Sons, Inc 01.05.2021; Wiley
• Subjects: Brain; Brain - diagnostic imaging; brain imaging; Brain research; Cognitive science; Consent; Data retrieval; general data protection regulation; Humans; Information Dissemination - ethics; informed consent; Informed Consent - ethics; Medical imaging; Neuroimaging; Neuroimaging - ethics; Neuroscience; Research Subjects; brain imaging; informed consent; general data protection regulation
• ISSN: 1065-9471; 1097-0193; 1097-0193
• DOI: 10.1002/hbm.25351

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.