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The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data.
Bannier, Elise; Barker, Gareth; Borghesani, Valentina; Broeckx, Nils; Clement, Patricia; Emblem, Kyrre E; Ghosh, Satrajit; Glerean, Enrico; Gorgolewski, Krzysztof J; Havu, Marko; Halchenko, Yaroslav O; Herholz, Peer; Hespel, Anne; Heunis, Stephan; Hu, Yue; Hu, Chuan-Peng; Huijser, Dorien; de la Iglesia Vayá, María; Jancalek, Radim; Katsaros, Vasileios K; Kieseler, Marie-Luise; Maumet, Camille; Moreau, Clara A; Mutsaerts, Henk-Jan; Oostenveld, Robert; Ozturk-Isik, Esin; Pascual Leone Espinosa, Nicolas; Pellman, John; Pernet, Cyril R; Pizzini, Francesca Benedetta; Trbalic, Amira Serifovic; Toussaint, Paule-Joanne; Visconti di Oleggio Castello, Matteo; Wang, Fengjuan; Wang, Cheng; Zhu, Hua.
Afiliación
  • Bannier E; Radiology Department, CHU Rennes, Rennes, France.
  • Barker G; Inria, CNRS, Inserm, IRISA UMR 6074, Empenn ERL, University of Rennes, Rennes, France.
  • Borghesani V; Department of Neuroimaging, King's College London, London, United Kingdom.
  • Broeckx N; Memory and Aging Center, Department of Neurology, University of California, San Francisco, California, USA.
  • Clement P; 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.
  • Emblem KE; Ghent Institute for functional and Metabolic Imaging, Ghent University, Ghent, Belgium.
  • Ghosh S; Oslo University Hospital, Oslo, Norway.
  • Glerean E; 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.
  • Gorgolewski KJ; Department of Otolaryngology - Head and Neck Surgery, Harvard Medical School, Boston, Massachusetts, USA.
  • Havu M; Aalto University, Espoo, Finland.
  • Halchenko YO; International Laboratory of Social Neurobiology, Institute of Cognitive Neuroscience, National Research University Higher School of Economics, Moscow, Russia.
  • Herholz P; Stanford University, Stanford, California, USA.
  • Hespel A; Department of Neuroscience and Biomedical Engineering, Aalto University, Espoo, Finland.
  • Heunis S; Dartmouth College, Hanover, New Hampshire, USA.
  • Hu Y; NeuroDataScience - ORIGAMI laboratory, McConnell Brain Imaging Centre, The Neuro (Montreal Neurological Institute-Hospital), Faculty of Medicine, McGill University, Montreal, Quebec, Canada.
  • Hu CP; CHU, Rennes, France.
  • Huijser D; Eindhoven University of Technology, Eindhoven, The Netherlands.
  • de la Iglesia Vayá M; Institute for Experimental Psychology, Heinrich-Heine-University of Düsseldorf, Düsseldorf, Germany.
  • Jancalek R; School of Psychology, Nanjing Normal University, Nanjing, China.
  • Katsaros VK; Erasmus University Rotterdam, Rotterdam, The Netherlands.
  • Kieseler ML; Biomedical Imaging Unit FISABIO-CIPF, Foundation for the Promotion of Health and Biomedical Research of the Valencian Community, Valencia, Spain.
  • Maumet C; Department of Neurosurgery, St. Anne's University Hospital, Masaryk University, Brno, Czech Republic.
  • Moreau CA; 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.
  • Mutsaerts HJ; Department of Neurosurgery and Neurology, National and Kapodistrian University of Athens, Athens, Greece.
  • Oostenveld R; Department of Psychological and Brain Sciences, Dartmouth College, Hanover, New Hampshire, USA.
  • Ozturk-Isik E; Inria, University of Rennes, CNRS, Inserm, IRISA UMR 6074, Empenn ERL U 1228, Rennes, France.
  • Pascual Leone Espinosa N; Pasteur Institute, Paris, France.
  • Pellman J; Department of Radiology and Nuclear Medicine, Amsterdam University Medical Centers, Amsterdam, The Netherlands.
  • Pernet CR; Department of Radiology and Nuclear Medicine, University Hospital Ghent, Ghent, Belgium.
  • Pizzini FB; Donders Institute for Brain, Cognition and Behaviour; Radboud University, Nijmegen, The Netherlands.
  • Trbalic AS; Bogazici University, Istanbul, Turkey.
  • Toussaint PJ; Biomedical Imaging Unit, FISABIO-CIPF, Foundation for the Promotion of Health and Biomedical Research of the Valencian Community, Valencia, Spain.
  • Visconti di Oleggio Castello M; Zuckerman Mind Brain Behavior Institute, Columbia University, New York, New York, USA.
  • Wang F; Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, United Kingdom.
  • Wang C; University of Verona, Verona, Italy.
  • Zhu H; Faculty of Electrical Engineering, University of Tuzla, Tuzla, Bosnia and Herzegovina.
Hum Brain Mapp ; 42(7): 1945-1951, 2021 05.
Article en En | MEDLINE | ID: mdl-33522661
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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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Encéfalo / Difusión de la Información / Sujetos de Investigación / Neuroimagen / Consentimiento Informado Aspecto: Ethics Límite: Humans Idioma: En Revista: Hum Brain Mapp Asunto de la revista: CEREBRO Año: 2021 Tipo del documento: Article País de afiliación: Francia
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Encéfalo / Difusión de la Información / Sujetos de Investigación / Neuroimagen / Consentimiento Informado Aspecto: Ethics Límite: Humans Idioma: En Revista: Hum Brain Mapp Asunto de la revista: CEREBRO Año: 2021 Tipo del documento: Article País de afiliación: Francia