Open AccessThe Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data
Author(s) -
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 ChuanPeng,
Huijser Dorien,
Iglesia Vayá María,
Jancalek Radim,
Katsaros Vasileios K.,
Kieseler MarieLuise,
Maumet Camille,
Moreau Clara A.,
Mutsaerts HenkJan,
Oostenveld Robert,
OzturkIsik Esin,
Pascual Leone Espinosa Nicolas,
Pellman John,
Pernet Cyril R,
Pizzini Francesca Benedetta,
Trbalić Amira Šerifović,
Toussaint PauleJoanne,
Visconti di Oleggio Castello Matteo,
Wang Fengjuan,
Wang Cheng,
Zhu Hua
Publication year - 2021
Publication title -
human brain mapping
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.005
H-Index - 191
eISSN - 1097-0193
pISSN - 1065-9471
DOI - 10.1002/hbm.25351
Subject(s) - informed consent , data sharing , context (archaeology) , internet privacy , open science , open data , psychology , engineering ethics , public relations , computer science , political science , medicine , law , alternative medicine , engineering , paleontology , physics , pathology , astronomy , biology
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.