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

E. Bannier, G. Barker, V. Borghesani, N. Broeckx, P. Clement, KE. Emblem, S. Ghosh, E. Glerean, KJ. Gorgolewski, M. Havu, YO. Halchenko, P. Herholz, A. Hespel, S. Heunis, Y. Hu, CP. Hu, D. Huijser, M. de la Iglesia Vayá, R. Jancalek, VK....

. 2021 ; 42 (7) : 1945-1951. [pub] 20210201

Jazyk angličtina Země Spojené státy americké

Typ dokumentu úvodníky, Research Support, N.I.H., Extramural, práce podpořená grantem, Research Support, U.S. Gov't, Non-P.H.S.

Perzistentní odkaz   https://www.medvik.cz/link/bmc22012449

Grantová podpora
P41 EB019936 NIBIB NIH HHS - United States
R01 MH096906 NIMH NIH HHS - United States

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.

Aalto University Espoo Finland

Biomedical Imaging Unit FISABIO CIPF Foundation for the Promotion of Health and Biomedical Research of the Valencian Community Valencia Spain

Bogazici University Istanbul Turkey

Centre for Clinical Brain Sciences University of Edinburgh Edinburgh United Kingdom

CHU Rennes France

Dartmouth College Hanover New Hampshire USA

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 Biological Medicine and Engineering BUAA Beihang University Beijing China

Department of Neuroimaging King's College London London United Kingdom

Department of Neuroscience and Biomedical Engineering Aalto University Espoo Finland

Department of Neurosurgery and Neurology National and Kapodistrian University of Athens Athens Greece

Department of Neurosurgery St Anne's University Hospital Masaryk University Brno Czech Republic

Department of Otolaryngology Head and Neck Surgery Harvard Medical School Boston Massachusetts USA

Department of Psychological and Brain Sciences Dartmouth College Hanover New Hampshire USA

Department of Radiology and Nuclear Medicine Amsterdam University Medical Centers Amsterdam The Netherlands

Department of Radiology and Nuclear Medicine University Hospital Ghent Ghent Belgium

Dewallens and partners law firm Leuven Belgium and Antwerp Health Law and Ethics Chair and P2 research group Faculty of law University of Antwerp Antwerp Belgium

Donders Institute for Brain Cognition and Behaviour

Eindhoven University of Technology Eindhoven The Netherlands

Erasmus University Rotterdam Rotterdam The Netherlands

Faculty of Electrical Engineering University of Tuzla Tuzla Bosnia and Herzegovina

Ghent Institute for functional and Metabolic Imaging Ghent University Ghent Belgium

Helen Wills Neuroscience Institute University of California Berkeley California USA

Inria CNRS Inserm IRISA UMR 6074 Empenn ERL University of Rennes Rennes France

Inria University of Rennes CNRS Inserm IRISA UMR 6074 Empenn ERL U 1228 Rennes France

Institute for Experimental Psychology Heinrich Heine University of Düsseldorf Düsseldorf Germany

International Laboratory of Social Neurobiology Institute of Cognitive Neuroscience National Research University Higher School of Economics Moscow Russia

McGill University Montreal Neurological Institute and Hospital Montreal Quebec Canada

McGovern Institute for Brain Research Massachusetts Institute of Technology Cambridge MA USA

Memory and Aging Center Department of Neurology University of California San Francisco California USA

National Institute of Education Nanyang Technological University Singapore Singapore

NeuroDataScience ORIGAMI laboratory McConnell Brain Imaging Centre The Neuro Faculty of Medicine McGill University Montreal Quebec Canada

Oslo University Hospital Oslo Norway

Pasteur Institute Paris France

Radboud University Nijmegen The Netherlands

Radiology Department CHU Rennes Rennes France

School of Health Fujian Medical University Fuzhou China

School of Psychology Nanjing Normal University Nanjing China

Stanford University Stanford California USA

University of Verona Verona Italy

Zuckerman Mind Brain Behavior Institute Columbia University New York New York USA

Citace poskytuje Crossref.org

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