TY - JOUR
T1 - The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data
AU - Bannier, Elise
AU - Barker, Gareth
AU - Borghesani, Valentina
AU - Broeckx, Nils
AU - Clement, Patricia
AU - Emblem, Kyrre E.
AU - Ghosh, Satrajit
AU - Glerean, Enrico
AU - Gorgolewski, Krzysztof J.
AU - Havu, Marko
AU - Halchenko, Yaroslav O.
AU - Herholz, Peer
AU - Hespel, Anne
AU - Heunis, Stephan
AU - Hu, Yue
AU - Hu, Chuan-Peng
AU - Huijser, Dorien
AU - de la Iglesia Vayá, María
AU - Jancalek, Radim
AU - Katsaros, Vasileios K.
AU - Kieseler, Marie-Luise
AU - Maumet, Camille
AU - Moreau, Clara A.
AU - Mutsaerts, Henk-Jan
AU - Oostenveld, Robert
AU - Ozturk-Isik, Esin
AU - Pascual Leone Espinosa, Nicolas
AU - Pellman, John
AU - Pernet, Cyril R.
AU - Pizzini, Francesca Benedetta
AU - Trbalić, Amira Šerifović
AU - Toussaint, Paule-Joanne
AU - Visconti di Oleggio Castello, Matteo
AU - Wang, Fengjuan
AU - Wang, Cheng
AU - Zhu, Hua
N1 - Funding Information: This work is first and foremost an open and free contribution from people in the working group with support from the US National Science Foundation (DataLad NSF 1429999), NIH (ReproNim NIH‐NIBIB P41 EB019936), the COST association (CA‐18206). RJ had further support from the INTER‐EXCELLENCE program (LTC20027), subprogram INTER‐COST of the Ministry of Education, Youth and Sports CR. P.H. was supported in parts by the ReproNim project and NIMH R01MH096906. E.G. was supported in parts by a grant from Neurocenter Finland and by the International Laboratory of Social Neurobiology ICN HSE RF 075–15–2019–1930. Funding Information: This work is first and foremost an open and free contribution from people in the working group with support from the US National Science Foundation (DataLad NSF 1429999), NIH (ReproNim NIH-NIBIB P41 EB019936), the COST association (CA-18206). RJ had further support from the INTER-EXCELLENCE program (LTC20027), subprogram INTER-COST of the Ministry of Education, Youth and Sports CR. P.H. was supported in parts by the ReproNim project and NIMH R01MH096906. E.G. was supported in parts by a grant from Neurocenter Finland and by the International Laboratory of Social Neurobiology ICN HSE RF 075?15?2019?1930. Publisher Copyright: © 2021 The Authors. Human Brain Mapping published by Wiley Periodicals LLC. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/5/1
Y1 - 2021/5/1
N2 - 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.
AB - 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.
KW - brain imaging
KW - general data protection regulation
KW - informed consent
UR - http://www.scopus.com/inward/record.url?scp=85100077142&partnerID=8YFLogxK
U2 - https://doi.org/10.1002/hbm.25351
DO - https://doi.org/10.1002/hbm.25351
M3 - Editorial
C2 - 33522661
SN - 1065-9471
VL - 42
SP - 1945
EP - 1951
JO - Human brain mapping
JF - Human brain mapping
IS - 7
ER -