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

BANNIER, E., G. BARKER, V. BORGHESANI, N. BROECKX, P. CLEMENT, K. E. EMBLEM, S. GHOSH, E. GLEREAN, K. J. GORGOLEWSKI, M. HAVU, Y. O. HALCHENKO, P. HERHOLZ, A. HESPEL, S. HEUNIS, Y. HU, C. P. HU, D. HUIJSER, M. D. VAYA, Radim JANČÁLEK, V. K. KATSAROS, M. L. KIESELER, C. MAUMET, C. A. MOREAU, H. J. MUTSAERTS, R. OOSTENVELD, E. OZTURK-ISIK, N. P. L. ESPINOSA, J. PELLMAN, C. R. PERNET, F. B. PIZZINI, A. S. TRBALIC, P. J. TOUSSAINT, M. V. D. CASTELLO, F. J. WANG, C. WANG and H. ZHU. The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data. Human Brain mapping. Hoboken: Wiley, 2021, vol. 42, No 7, p. 1945-1951. ISSN 1065-9471. Available from: https://dx.doi.org/10.1002/hbm.25351.

Basic information

Original name

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

Authors

BANNIER, E., G. BARKER, V. BORGHESANI, N. BROECKX, P. CLEMENT, K. E. EMBLEM, S. GHOSH, E. GLEREAN, K. J. GORGOLEWSKI, M. HAVU, Y. O. HALCHENKO (guarantor), P. HERHOLZ, A. HESPEL, S. HEUNIS, Y. HU, C. P. HU, D. HUIJSER, M. D. VAYA, Radim JANČÁLEK (203 Czech Republic, belonging to the institution), V. K. KATSAROS, M. L. KIESELER, C. MAUMET, C. A. MOREAU, H. J. MUTSAERTS, R. OOSTENVELD, E. OZTURK-ISIK, N. P. L. ESPINOSA, J. PELLMAN, C. R. PERNET, F. B. PIZZINI, A. S. TRBALIC, P. J. TOUSSAINT, M. V. D. CASTELLO, F. J. WANG, C. WANG and H. ZHU

Edition

Human Brain mapping, Hoboken, Wiley, 2021, 1065-9471

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Other information

Language

English

Type of outcome

Článek v odborném periodiku

Field of Study

30103 Neurosciences

Country of publisher

United States of America

Confidentiality degree

není předmětem státního či obchodního tajemství

References:

URL

Impact factor

Impact factor: 5.399

RIV identification code

RIV/00216224:14110/21:00122118

Organization unit

Faculty of Medicine

DOI

http://dx.doi.org/10.1002/hbm.25351

UT WoS

000613327300001

Keywords in English

brain imaging; general data protection regulation; informed consent

Tags

14110131, rivok

Tags

International impact, Reviewed

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Abstract

V originále

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.