The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data
Por:
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, Trbalic AŠ, Toussaint PJ, Visconti di Oleggio Castello M, Wang F, Wang C and Zhu H
Publicada:
1 may 2021
Ahead of Print:
1 feb 2021
Resumen:
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.
Filiaciones:
Bannier E:
Radiology Department, CHU Rennes, Rennes, France
Inria, CNRS, Inserm, IRISA UMR 6074, Empenn ERL, University of Rennes, Rennes, France
Barker G:
Department of Neuroimaging, King's College London, London, United Kingdom
Borghesani V:
Memory and Aging Center, Department of Neurology, University of California, San Francisco, California, USA
Broeckx N:
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
Clement P:
Ghent Institute for functional and Metabolic Imaging, Ghent University, Ghent, Belgium
Emblem KE:
Oslo University Hospital, Oslo, Norway
Ghosh S:
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
Department of Otolaryngology - Head and Neck Surgery, Harvard Medical School, Boston, Massachusetts, USA
Glerean E:
Aalto University, Espoo, Finland
International Laboratory of Social Neurobiology, Institute of Cognitive Neuroscience, National Research University Higher School of Economics, Moscow, Russia
Gorgolewski KJ:
Stanford University, Stanford, California, USA
Havu M:
Department of Neuroscience and Biomedical Engineering, Aalto University, Espoo, Finland
Halchenko YO:
Dartmouth College, Hanover, New Hampshire, USA
Herholz P:
NeuroDataScience - ORIGAMI laboratory, McConnell Brain Imaging Centre, The Neuro (Montreal Neurological Institute-Hospital), Faculty of Medicine, McGill University, Montreal, Quebec, Canada
Hespel A:
CHU, Rennes, France
Heunis S:
Eindhoven University of Technology, Eindhoven, The Netherlands
Hu Y:
Institute for Experimental Psychology, Heinrich-Heine-University of Düsseldorf, Düsseldorf, Germany
Hu CP:
School of Psychology, Nanjing Normal University, Nanjing, China
Huijser D:
Erasmus University Rotterdam, Rotterdam, The Netherlands
:
Biomedical Imaging Unit FISABIO-CIPF, Foundation for the Promotion of Health and Biomedical Research of the Valencian Community, Valencia, Spain
Jancalek R:
Department of Neurosurgery, St. Anne's University Hospital, Masaryk University, Brno, Czech Republic
Katsaros VK:
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
Department of Neurosurgery and Neurology, National and Kapodistrian University of Athens, Athens, Greece
Kieseler ML:
Department of Psychological and Brain Sciences, Dartmouth College, Hanover, New Hampshire, USA
Maumet C:
Inria, University of Rennes, CNRS, Inserm, IRISA UMR 6074, Empenn ERL U 1228, Rennes, France
Moreau CA:
Pasteur Institute, Paris, France
Mutsaerts HJ:
Department of Radiology and Nuclear Medicine, Amsterdam University Medical Centers, Amsterdam, The Netherlands
Department of Radiology and Nuclear Medicine, University Hospital Ghent, Ghent, Belgium
Oostenveld R:
Donders Institute for Brain, Cognition and Behaviour
Radboud University, Nijmegen, The Netherlands
Ozturk-Isik E:
Bogazici University, Istanbul, Turkey
Pascual Leone Espinosa N:
Biomedical Imaging Unit, FISABIO-CIPF, Foundation for the Promotion of Health and Biomedical Research of the Valencian Community, Valencia, Spain
Pellman J:
Zuckerman Mind Brain Behavior Institute, Columbia University, New York, New York, USA
Pernet CR:
Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, United Kingdom
Pizzini FB:
University of Verona, Verona, Italy
Trbalic AŠ:
Faculty of Electrical Engineering, University of Tuzla, Tuzla, Bosnia and Herzegovina
Toussaint PJ:
McGill University, Montreal Neurological Institute and Hospital, Montreal, Quebec, Canada
Visconti di Oleggio Castello M:
Helen Wills Neuroscience Institute, University of California, Berkeley, California, USA
Wang F:
National Institute of Education, Nanyang Technological University, Singapore, Singapore
Wang C:
School of Health, Fujian Medical University, Fuzhou, China
Zhu H:
Department of Biological Medicine and Engineering, BUAA, Beihang University, Beijing, China
Green Published, gold, Green Submitted
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