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

Elise Bannier; Gareth Barker; Valentina Borghesani; Nils Broeckx; Patricia Clement; Kyrre E. Emblem; Satrajit Ghosh; Enrico Glerean; Krzysztof J. Gorgolewski; Marko Havu; Yaroslav O. Halchenko; Peer Herholz; Anne Hespel; Stephan Heunis; Yue Hu; Chuan Peng Hu; Dorien Huijser; María de la Iglesia Vayá; Radim Jancalek; Vasileios K. Katsaros; Marie Luise Kieseler; Camille Maumet; Clara A. Moreau; Henk Jan Mutsaerts; Robert Oostenveld; Esin Ozturk-Isik; Nicolas Pascual Leone Espinosa; John Pellman; Cyril R. Pernet; Francesca Benedetta Pizzini; Amira Šerifović Trbalić; Paule Joanne Toussaint; Matteo Visconti di Oleggio Castello; Fengjuan Wang; Cheng Wang; Hua Zhu

doi:10.1002/hbm.25351

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

Elise Bannier, Gareth Barker, Valentina Borghesani, Nils Broeckx, Patricia Clement, Kyrre E. Emblem, Satrajit Ghosh, Enrico Glerean, Krzysztof J. Gorgolewski, Marko Havu, Yaroslav O. Halchenko^*, Peer Herholz^*, Anne Hespel, Stephan Heunis^*, Yue Hu, Chuan Peng Hu, Dorien Huijser, María de la Iglesia Vayá, Radim Jancalek, Vasileios K. KatsarosMarie Luise Kieseler, Camille Maumet, Clara A. Moreau, Henk Jan Mutsaerts, Robert Oostenveld, Esin Ozturk-Isik, Nicolas Pascual Leone Espinosa, John Pellman, Cyril R. Pernet^*, Francesca Benedetta Pizzini, Amira Šerifović Trbalić, Paule Joanne Toussaint, Matteo Visconti di Oleggio Castello, Fengjuan Wang, Cheng Wang, Hua Zhu

^*Corresponding author for this work

Communication Sciences and Disorders

Research output: Contribution to journal › Editorial › peer-review

27 Scopus citations

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.

Original language	English (US)
Pages (from-to)	1945-1951
Number of pages	7
Journal	Human Brain Mapping
Volume	42
Issue number	7
DOIs	https://doi.org/10.1002/hbm.25351
State	Published - May 2021

Funding

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\u201315\u20132019\u20131930. European Cooperation in Science and Technology, Grant/Award Number: CA\u201018206; National Institute of Health, Grant/Award Number: NIH\u2010NIBIB P41 EB019936; National Science Foundation, Grant/Award Number: NSF 1429999; EU INTER\u2010EXCELLENCE program, Grant/Award Number: LTC20027; NIMH, Grant/Award Number: R01MH096906; International Laboratory of Social Neurobiology ICN HSE RF, Grant/Award Number: 075\u201315\u20132019\u20131930 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\u2010NIBIB P41 EB019936), the COST association (CA\u201018206). RJ had further support from the INTER\u2010EXCELLENCE program (LTC20027), subprogram INTER\u2010COST 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\u201315\u20132019\u20131930.

Keywords

brain imaging
general data protection regulation
informed consent

ASJC Scopus subject areas

Anatomy
Radiological and Ultrasound Technology
Radiology Nuclear Medicine and imaging
Neurology
Clinical Neurology

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10.1002/hbm.25351

Cite this

Bannier, E., Barker, G., Borghesani, V., Broeckx, N., Clement, P., Emblem, K. E., Ghosh, S., Glerean, E., Gorgolewski, K. J., Havu, M., Halchenko, Y. O., Herholz, P., Hespel, A., Heunis, S., Hu, Y., Hu, C. P., Huijser, D., de la Iglesia Vayá, M., Jancalek, R., ... Zhu, H. (2021). The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data. Human Brain Mapping, 42(7), 1945-1951. https://doi.org/10.1002/hbm.25351

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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.",

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author = "Elise Bannier and Gareth Barker and Valentina Borghesani and Nils Broeckx and Patricia Clement and Emblem, \{Kyrre E.\} and Satrajit Ghosh and Enrico Glerean and Gorgolewski, \{Krzysztof J.\} and Marko Havu and Halchenko, \{Yaroslav O.\} and Peer Herholz and Anne Hespel and Stephan Heunis and Yue Hu and Hu, \{Chuan Peng\} and Dorien Huijser and \{de la Iglesia Vay{\'a}\}, Mar{\'i}a and Radim Jancalek and Katsaros, \{Vasileios K.\} and Kieseler, \{Marie Luise\} and Camille Maumet and Moreau, \{Clara A.\} and Mutsaerts, \{Henk Jan\} and Robert Oostenveld and Esin Ozturk-Isik and \{Pascual Leone Espinosa\}, Nicolas and John Pellman and Pernet, \{Cyril R.\} and Pizzini, \{Francesca Benedetta\} and Trbali{\'c}, \{Amira {\v S}erifovi{\'c}\} and Toussaint, \{Paule Joanne\} and \{Visconti di Oleggio Castello\}, Matteo and Fengjuan Wang and Cheng Wang and Hua Zhu",

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Bannier, E, Barker, G, Borghesani, V, Broeckx, N, Clement, P, Emblem, KE, Ghosh, S, Glerean, E, Gorgolewski, KJ, Havu, M, Halchenko, YO, Herholz, P, Hespel, A, Heunis, S, Hu, Y, Hu, CP, Huijser, D, de la Iglesia Vayá, M, Jancalek, R, Katsaros, VK, Kieseler, ML, Maumet, C, Moreau, CA, Mutsaerts, HJ, Oostenveld, R, Ozturk-Isik, E, Pascual Leone Espinosa, N, Pellman, J, Pernet, CR, Pizzini, FB, Trbalić, AŠ, Toussaint, PJ, Visconti di Oleggio Castello, M, Wang, F, Wang, C & Zhu, H 2021, 'The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data', Human Brain Mapping, vol. 42, no. 7, pp. 1945-1951. https://doi.org/10.1002/hbm.25351

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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

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

Abstract

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Keywords

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