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

Elise Bannier 1, 2 Gareth Barker 3 Valentina Borghesani 4 Nils Broeckx 5 Patricia Clement 6 Kyrre Emblem 7 Satrajit Ghosh 8, 9 Enrico Glerean 10, 11 Krzysztof Gorgolewski 12 Marko Havu 10 yaroslav Halchenko 13 Peer Herholz 14 Anne Hespel 15 Stephan Heunis 16 yue Hu 17 Chuan‐peng Hu 18 Dorien Huijser 19 María Iglesia Vayá 20 Radim Jancalek 21 Vasileios Katsaros 22 Marie‐luise Kieseler 13 Camille Maumet 23 Clara Moreau 24 Henk‐jan Mutsaerts 25 Robert Oostenveld 26 Esin Ozturk‐isik 27 Nicolas Pascual Leone Espinosa 20 John Pellman 28 Cyril Pernet 29 Francesca Benedetta Pizzini 30 Amira Šerifović Trbalić 31 Paule‐joanne Toussaint 32 Matteo Visconti Di Oleggio Castello 33 Fengjuan Wang 34 Cheng Wang 35 Hua Zhu 36 
1 IRISA - Institut de Recherche en Informatique et Systèmes Aléatoires
2 Département de Radiologie [Rennes]
3 King‘s College London
4 UCSF - University of California [San Francisco]
5 UA - University of Antwerp
6 UGENT - Universiteit Gent = Ghent University [Belgium]
7 Oslo University Hospital [Oslo]
8 MIT - Massachusetts Institute of Technology
9 HMS - Harvard Medical School [Boston]
10 Aalto University
11 HSE - Vysšaja škola èkonomiki = National Research University Higher School of Economics [Moscow]
12 Stanford University
13 Dartmouth College [Hanover]
14 MNI - McConnell Brain Imaging Centre
15 Centre Hospitalier Universitaire [Rennes]
16 TU/e - Eindhoven University of Technology [Eindhoven]
17 Heinrich Heine Universität Düsseldorf = Heinrich Heine University [Düsseldorf]
18 NNU - Nanjing Normal University
19 Erasmus University Rotterdam
20 FISABIO - Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunitat Valenciana [Espagne]
21 St. Anne’s University Hospital [Brno]
22 NKUA - National and Kapodistrian University of Athens
23 Empenn
INSERM - Institut National de la Santé et de la Recherche Médicale, Inria Rennes – Bretagne Atlantique , IRISA-D5 - SIGNAUX ET IMAGES NUMÉRIQUES, ROBOTIQUE
24 Institut Pasteur [Paris]
25 VU University Medical Center [Amsterdam]
26 Radboud university [Nijmegen]
27 Boǧaziçi üniversitesi = Boğaziçi University [Istanbul]
28 Mortimer B. Zuckerman Mind Brain Behavior Institute
29 University of Edinburgh
30 UNIVR - Università degli studi di Verona = University of Verona
31 Univerzitet u Tuzli [Tuzla, Bosnie-Herzégovine]
32 Montreal Neurological Institute and Hospital
33 HWNI - The Helen Wills Neuroscience Institute
34 Nanyang Technological University [Singapour]
35 Fujian Normal University [Fujian]
36 BUAA - Beihang University
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.
Keywords : brain imaging general data protection regulation informed consent
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Journal articles
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https://www.hal.inserm.fr/inserm-03128167
Contributor : Camille Maumet Connect in order to contact the contributor
Submitted on : Tuesday, February 2, 2021 - 9:38:05 AM
Last modification on : Friday, April 8, 2022 - 4:04:03 PM
Long-term archiving on: : Monday, May 3, 2021 - 6:16:10 PM

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INSERM | PASTEUR | INSTITUT-TELECOM | UNIV-RENNES1 | CNRS | INRIA | INSA-RENNES | IRISA | CENTRALESUPELEC | INRIA2 | UR1-MATH-STIC | UR1-UFR-ISTIC | UNIV-RENNES | INSA-GROUPE | UR1-MATH-NUM | UR1-BIO-SA

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Elise Bannier, Gareth Barker, Valentina Borghesani, Nils Broeckx, Patricia Clement, et al.. The Open Brain Consent : Informing research participants and obtaining consent to share brain imaging data. Human Brain Mapping, Wiley, 2021, 42 (7), pp.1945-1951. ⟨10.1002/hbm.25351⟩. ⟨inserm-03128167⟩

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