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 UC San Francisco - University of California [San Francisco]
5 UA - University of Antwerp
6 UGENT - Universiteit Gent = Ghent University
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 - Neuroimagerie: méthodes et applications
24 IP - 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
2 Département de Radiologie [Rennes]
3 King‘s College London
4 UC San Francisco - University of California [San Francisco]
5 UA - University of Antwerp
6 UGENT - Universiteit Gent = Ghent University
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 - Neuroimagerie: méthodes et applications
24 IP - 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
Elise Bannier
- Function : Author
- PersonId : 764502
- ORCID : 0000-0002-8942-7486
- IdRef : 160570026
Yaroslav Halchenko
- Function : Author
- PersonId : 783510
- ORCID : 0000-0003-3456-2493
Peer Herholz
- Function : Author
- PersonId : 802044
- ORCID : 0000-0002-9840-6257
Camille Maumet
- Function : Author
- PersonId : 2060
- IdHAL : cmaumet
- ORCID : 0000-0002-6290-553X
- IdRef : 171543009
Clara Moreau
- Function : Author
- PersonId : 749296
- IdHAL : clara-moreau
- ORCID : 0000-0001-6217-731X
Cyril Pernet
- Function : Author
- PersonId : 768075
- ORCID : 0000-0003-4010-4632
- IdRef : 089903404
Cheng Wang
- Function : Author
- PersonId : 766798
- ORCID : 0000-0002-6470-7289
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.
Origin : Publication funded by an institution
