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

Elise Bannier^{1

2}, Gareth Barker³, Valentina Borghesani⁴, Nils Broeckx⁵, Patricia Clement⁶, Kyrre E Emblem⁷, Satrajit Ghosh^{8

9}, Enrico Glerean^{10

11}, Krzysztof J Gorgolewski¹², Marko Havu¹³, Yaroslav O Halchenko¹⁴, Peer Herholz¹⁵, Anne Hespel¹⁶, Stephan Heunis¹⁷, Yue Hu¹⁸, Chuan-Peng Hu¹⁹, Dorien Huijser²⁰, María de la Iglesia Vayá²¹, Radim Jancalek²², Vasileios K Katsaros^{23

24}, Marie-Luise Kieseler²⁵, Camille Maumet²⁶, Clara A Moreau²⁷, Henk-Jan Mutsaerts^{28

29}, Robert Oostenveld³⁰, Esin Ozturk-Isik³¹, Nicolas Pascual Leone Espinosa³², John Pellman³³, Cyril R Pernet³⁴, Francesca Benedetta Pizzini³⁵, Amira Šerifović Trbalić³⁶, Paule-Joanne Toussaint³⁷, Matteo Visconti di Oleggio Castello³⁸, Fengjuan Wang³⁹, Cheng Wang⁴⁰, Hua Zhu⁴¹

Affiliations

¹ Radiology Department, CHU Rennes, Rennes, France.
² Inria, CNRS, Inserm, IRISA UMR 6074, Empenn ERL, University of Rennes, Rennes, France.
³ Department of Neuroimaging, King's College London, London, United Kingdom.
⁴ Memory and Aging Center, Department of Neurology, University of California, San Francisco, California, USA.
⁵ Dewallens & partners law firm, Leuven, Belgium & Antwerp Health Law and Ethics Chair (AHLEC) and P2 research group, Faculty of law, University of Antwerp, Antwerp, Belgium.
⁶ Ghent Institute for functional and Metabolic Imaging, Ghent University, Ghent, Belgium.
⁷ Oslo University Hospital, Oslo, Norway.
⁸ McGovern Institute for Brain Research, Massachusetts Institute of Technology, Cambridge, MA, USA; Department of Otolaryngology - Head and Neck Surgery, Harvard Medical School, Boston, Massachusetts, USA.
⁹ Department of Otolaryngology - Head and Neck Surgery, Harvard Medical School, Boston, Massachusetts, USA.
¹⁰ Aalto University, Espoo, Finland.
¹¹ International Laboratory of Social Neurobiology, Institute of Cognitive Neuroscience, National Research University Higher School of Economics, Moscow, Russia.
¹² Stanford University, Stanford, California, USA.
¹³ Department of Neuroscience and Biomedical Engineering, Aalto University, Espoo, Finland.
¹⁴ Dartmouth College, Hanover, New Hampshire, USA.
¹⁵ NeuroDataScience - ORIGAMI laboratory, McConnell Brain Imaging Centre, The Neuro (Montreal Neurological Institute-Hospital), Faculty of Medicine, McGill University, Montreal, Quebec, Canada.
¹⁶ CHU, Rennes, France.
¹⁷ Eindhoven University of Technology, Eindhoven, The Netherlands.
¹⁸ Institute for Experimental Psychology, Heinrich-Heine-University of Düsseldorf, Düsseldorf, Germany.
¹⁹ School of Psychology, Nanjing Normal University, Nanjing, China.
²⁰ Erasmus University Rotterdam, Rotterdam, The Netherlands.
²¹ Biomedical Imaging Unit FISABIO-CIPF, Foundation for the Promotion of Health and Biomedical Research of the Valencian Community, Valencia, Spain.
²² Department of Neurosurgery, St. Anne's University Hospital, Masaryk University, Brno, Czech Republic.
²³ Department of Advanced Imaging Modalities, MRI Unit, General Anti-Cancer and Oncological Hospital of Athens"St. Savvas", National and Kapodistrian University of Athens, Athens, Greece.
²⁴ Department of Neurosurgery and Neurology, National and Kapodistrian University of Athens, Athens, Greece.
²⁵ Department of Psychological and Brain Sciences, Dartmouth College, Hanover, New Hampshire, USA.
²⁶ Inria, University of Rennes, CNRS, Inserm, IRISA UMR 6074, Empenn ERL U 1228, Rennes, France.
²⁷ Pasteur Institute, Paris, France.
²⁸ Department of Radiology and Nuclear Medicine, Amsterdam University Medical Centers, Amsterdam, The Netherlands.
²⁹ Department of Radiology and Nuclear Medicine, University Hospital Ghent, Ghent, Belgium.
³⁰ Donders Institute for Brain, Cognition and Behaviour; Radboud University, Nijmegen, The Netherlands.
³¹ Bogazici University, Istanbul, Turkey.
³² Biomedical Imaging Unit, FISABIO-CIPF, Foundation for the Promotion of Health and Biomedical Research of the Valencian Community, Valencia, Spain.
³³ Zuckerman Mind Brain Behavior Institute, Columbia University, New York, New York, USA.
³⁴ Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, United Kingdom.
³⁵ University of Verona, Verona, Italy.
³⁶ Faculty of Electrical Engineering, University of Tuzla, Tuzla, Bosnia and Herzegovina.
³⁷ McGill University, Montreal Neurological Institute and Hospital, Montreal, Quebec, Canada.
³⁸ Helen Wills Neuroscience Institute, University of California, Berkeley, California, USA.
³⁹ National Institute of Education, Nanyang Technological University, Singapore, Singapore.
⁴⁰ School of Health, Fujian Medical University, Fuzhou, China.
⁴¹ Department of Biological Medicine and Engineering, BUAA, Beihang University, Beijing, China.

PMID: 33522661
PMCID: PMC8046140
DOI: 10.1002/hbm.25351

Editorial

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

Elise Bannier et al. Hum Brain Mapp. 2021 May.

. 2021 May;42(7):1945-1951.

doi: 10.1002/hbm.25351. Epub 2021 Feb 1.

Authors

Affiliations

¹ Radiology Department, CHU Rennes, Rennes, France.
² Inria, CNRS, Inserm, IRISA UMR 6074, Empenn ERL, University of Rennes, Rennes, France.
³ Department of Neuroimaging, King's College London, London, United Kingdom.
⁴ Memory and Aging Center, Department of Neurology, University of California, San Francisco, California, USA.
⁵ Dewallens & partners law firm, Leuven, Belgium & Antwerp Health Law and Ethics Chair (AHLEC) and P2 research group, Faculty of law, University of Antwerp, Antwerp, Belgium.
⁶ Ghent Institute for functional and Metabolic Imaging, Ghent University, Ghent, Belgium.
⁷ Oslo University Hospital, Oslo, Norway.
⁸ McGovern Institute for Brain Research, Massachusetts Institute of Technology, Cambridge, MA, USA; Department of Otolaryngology - Head and Neck Surgery, Harvard Medical School, Boston, Massachusetts, USA.
⁹ Department of Otolaryngology - Head and Neck Surgery, Harvard Medical School, Boston, Massachusetts, USA.
¹⁰ Aalto University, Espoo, Finland.
¹¹ International Laboratory of Social Neurobiology, Institute of Cognitive Neuroscience, National Research University Higher School of Economics, Moscow, Russia.
¹² Stanford University, Stanford, California, USA.
¹³ Department of Neuroscience and Biomedical Engineering, Aalto University, Espoo, Finland.
¹⁴ Dartmouth College, Hanover, New Hampshire, USA.
¹⁵ NeuroDataScience - ORIGAMI laboratory, McConnell Brain Imaging Centre, The Neuro (Montreal Neurological Institute-Hospital), Faculty of Medicine, McGill University, Montreal, Quebec, Canada.
¹⁶ CHU, Rennes, France.
¹⁷ Eindhoven University of Technology, Eindhoven, The Netherlands.
¹⁸ Institute for Experimental Psychology, Heinrich-Heine-University of Düsseldorf, Düsseldorf, Germany.
¹⁹ School of Psychology, Nanjing Normal University, Nanjing, China.
²⁰ Erasmus University Rotterdam, Rotterdam, The Netherlands.
²¹ Biomedical Imaging Unit FISABIO-CIPF, Foundation for the Promotion of Health and Biomedical Research of the Valencian Community, Valencia, Spain.
²² Department of Neurosurgery, St. Anne's University Hospital, Masaryk University, Brno, Czech Republic.
²³ Department of Advanced Imaging Modalities, MRI Unit, General Anti-Cancer and Oncological Hospital of Athens"St. Savvas", National and Kapodistrian University of Athens, Athens, Greece.
²⁴ Department of Neurosurgery and Neurology, National and Kapodistrian University of Athens, Athens, Greece.
²⁵ Department of Psychological and Brain Sciences, Dartmouth College, Hanover, New Hampshire, USA.
²⁶ Inria, University of Rennes, CNRS, Inserm, IRISA UMR 6074, Empenn ERL U 1228, Rennes, France.
²⁷ Pasteur Institute, Paris, France.
²⁸ Department of Radiology and Nuclear Medicine, Amsterdam University Medical Centers, Amsterdam, The Netherlands.
²⁹ Department of Radiology and Nuclear Medicine, University Hospital Ghent, Ghent, Belgium.
³⁰ Donders Institute for Brain, Cognition and Behaviour; Radboud University, Nijmegen, The Netherlands.
³¹ Bogazici University, Istanbul, Turkey.
³² Biomedical Imaging Unit, FISABIO-CIPF, Foundation for the Promotion of Health and Biomedical Research of the Valencian Community, Valencia, Spain.
³³ Zuckerman Mind Brain Behavior Institute, Columbia University, New York, New York, USA.
³⁴ Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, United Kingdom.
³⁵ University of Verona, Verona, Italy.
³⁶ Faculty of Electrical Engineering, University of Tuzla, Tuzla, Bosnia and Herzegovina.
³⁷ McGill University, Montreal Neurological Institute and Hospital, Montreal, Quebec, Canada.
³⁸ Helen Wills Neuroscience Institute, University of California, Berkeley, California, USA.
³⁹ National Institute of Education, Nanyang Technological University, Singapore, Singapore.
⁴⁰ School of Health, Fujian Medical University, Fuzhou, China.
⁴¹ Department of Biological Medicine and Engineering, BUAA, Beihang University, Beijing, China.

PMID: 33522661
PMCID: PMC8046140
DOI: 10.1002/hbm.25351

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.

PubMed Disclaimer

Conflict of interest statement

We declare no conflict of interest related to this work.

Figures

**FIGURE 1**
The typical structural MRI of the brain is made up of a series of 2D slices (left) from which it is easy to reconstruct a face. Pseudonymization procedures (from the middle to right) go from blurring/masking the face to zero‐out an entire part of the image, increasing anonymity but decreasing usage and sometimes damaging the frontal part of the brain. (This image was made from the MRI of one of the authors, CP, visualized with MRICRoGL, masked using mask_face (https://nrg.wustl.edu/software/face‐masking/usage/), mri_deface from the freesurfer suite (https://surfer.nmr.mgh.harvard.edu/fswiki/mri_deface) and SPM12 (https://www.fil.ion.ucl.ac.uk/spm/software/spm12/) — (https://doi.org/10.7488/ds/2877)

See this image and copyright information in PMC

References

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources