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

Autor: Nicolas Pascual Leone Espinosa, Matteo Visconti di Oleggio Castello, Stephan Heunis, Camille Maumet, Peer Herholz, Radim Jančálek, Cheng Wang, Vasileios K. Katsaros, Cyril Pernet, Henk-Jan Mutsaerts, Yaroslav O. Halchenko, Elise Bannier, Robert Oostenveld, Clara Moreau, Marko Havu, Nils Broeckx, Fengjuan Wang, Chuan-Peng Hu, Patricia Clement, Yue Hu, Dorien C. Huijser, Esin Ozturk-Isik, Paule-Joanne Toussaint, Satrajit S. Ghosh, Marie-Luise Kieseler, Enrico Glerean, Francesca B. Pizzini, Hua Zhu, Valentina Borghesani, John Pellman, María de la Iglesia Vayá, Krzysztof J. Gorgolewski, Gareth J. Barker, Kyrre E. Emblem, Anne Hespel, Amira Serifovic Trbalic
Přispěvatelé: Institut de Recherche en Informatique et Systèmes Aléatoires (IRISA), Université de Rennes (UR)-Institut National des Sciences Appliquées - Rennes (INSA Rennes), Institut National des Sciences Appliquées (INSA)-Institut National des Sciences Appliquées (INSA)-Université de Bretagne Sud (UBS)-École normale supérieure - Rennes (ENS Rennes)-Institut National de Recherche en Informatique et en Automatique (Inria)-CentraleSupélec-Centre National de la Recherche Scientifique (CNRS)-IMT Atlantique (IMT Atlantique), Institut Mines-Télécom [Paris] (IMT)-Institut Mines-Télécom [Paris] (IMT), Département de Radiologie [Rennes], Université de Rennes (UR), King‘s College London, University of California [San Francisco] (UC San Francisco), University of California (UC), University of Antwerp (UA), Universiteit Gent = Ghent University (UGENT), Oslo University Hospital [Oslo], Massachusetts Institute of Technology (MIT), Harvard Medical School [Boston] (HMS), Aalto University, Vysšaja škola èkonomiki = National Research University Higher School of Economics [Moscow] (HSE), Stanford University, Dartmouth College [Hanover], McConnell Brain Imaging Centre (MNI), Montreal Neurological Institute and Hospital, McGill University = Université McGill [Montréal, Canada]-McGill University = Université McGill [Montréal, Canada], Centre Hospitalier Universitaire [Rennes], Eindhoven University of Technology [Eindhoven] (TU/e), Heinrich Heine Universität Düsseldorf = Heinrich Heine University [Düsseldorf], Nanjing Normal University (NNU), Erasmus University Rotterdam, Fundación para el Fomento de la Investigación Sanitaria y Biomédica de la Comunitat Valenciana [Espagne] (FISABIO), St. Anne’s University Hospital [Brno], National and Kapodistrian University of Athens (NKUA), Neuroimagerie: méthodes et applications (Empenn), Institut National de la Santé et de la Recherche Médicale (INSERM)-Inria Rennes – Bretagne Atlantique, Institut National de Recherche en Informatique et en Automatique (Inria)-Institut National de Recherche en Informatique et en Automatique (Inria)-SIGNAUX ET IMAGES NUMÉRIQUES, ROBOTIQUE (IRISA-D5), Institut Mines-Télécom [Paris] (IMT)-Institut Mines-Télécom [Paris] (IMT)-Université de Rennes (UR)-Institut National des Sciences Appliquées - Rennes (INSA Rennes), Institut Mines-Télécom [Paris] (IMT)-Institut Mines-Télécom [Paris] (IMT)-Institut de Recherche en Informatique et Systèmes Aléatoires (IRISA), Institut National des Sciences Appliquées (INSA)-Institut National des Sciences Appliquées (INSA)-Université de Bretagne Sud (UBS)-École normale supérieure - Rennes (ENS Rennes)-CentraleSupélec-Centre National de la Recherche Scientifique (CNRS)-IMT Atlantique (IMT Atlantique), Institut Pasteur [Paris] (IP), VU University Medical Center [Amsterdam], Radboud University [Nijmegen], Boǧaziçi üniversitesi = Boğaziçi University [Istanbul], Mortimer B. Zuckerman Mind Brain Behavior Institute, Columbia University [New York], University of Edinburgh, Università degli studi di Verona = University of Verona (UNIVR), Univerzitet u Tuzli [Tuzla, Bosnie-Herzégovine], McGill University = Université McGill [Montréal, Canada], The Helen Wills Neuroscience Institute (HWNI), University of California [Berkeley] (UC Berkeley), University of California (UC)-University of California (UC), Nanyang Technological University [Singapour], Fujian Normal University [Fujian], Beihang University (BUAA), European Cooperation in Science and Technology, Grant/Award Number: CA‐18206, National Institute of Health, Grant/Award Number: NIH‐NIBIB P41 EB019936, National Science Foundation, Grant/Award Number: NSF 1429999, EU INTER‐EXCELLENCE program, Grant/Award Number: LTC20027, NIMH, Grant/Award Number: R01MH096906, International Laboratory of Social Neurobiology ICN HSE RF, Grant/Award Number: 075–15–2019–1930, Maumet, Camille, Radiology and nuclear medicine, Université de Bretagne Sud (UBS)-Institut National des Sciences Appliquées - Rennes (INSA Rennes), Institut National des Sciences Appliquées (INSA)-Université de Rennes (UNIV-RENNES)-Institut National des Sciences Appliquées (INSA)-Université de Rennes (UNIV-RENNES)-Institut National de Recherche en Informatique et en Automatique (Inria)-École normale supérieure - Rennes (ENS Rennes)-Centre National de la Recherche Scientifique (CNRS)-Université de Rennes 1 (UR1), Université de Rennes (UNIV-RENNES)-CentraleSupélec-IMT Atlantique Bretagne-Pays de la Loire (IMT Atlantique), Université de Rennes 1 (UR1), Université de Rennes (UNIV-RENNES)-Université de Rennes (UNIV-RENNES), University of California [San Francisco] (UCSF), University of California, Universiteit Gent = Ghent University [Belgium] (UGENT), National Research University Higher School of Economics [Moscow] (HSE), Empenn, Institut Mines-Télécom [Paris] (IMT)-Institut Mines-Télécom [Paris] (IMT)-Université de Bretagne Sud (UBS)-Institut National des Sciences Appliquées - Rennes (INSA Rennes), Institut National des Sciences Appliquées (INSA)-Université de Rennes (UNIV-RENNES)-Institut National des Sciences Appliquées (INSA)-Université de Rennes (UNIV-RENNES)-École normale supérieure - Rennes (ENS Rennes)-Centre National de la Recherche Scientifique (CNRS)-Université de Rennes 1 (UR1), Institut Pasteur [Paris], Radboud university [Nijmegen], Boğaziçi University [Istanbul], University of Verona (UNIVR), University of California [Berkeley], University of California-University of California, Université de Rennes (UNIV-RENNES)-Université de Rennes (UNIV-RENNES)-Institut National des Sciences Appliquées - Rennes (INSA Rennes), Institut National des Sciences Appliquées (INSA)-Université de Rennes (UNIV-RENNES)-Institut National des Sciences Appliquées (INSA)-Université de Bretagne Sud (UBS)-École normale supérieure - Rennes (ENS Rennes)-Institut National de Recherche en Informatique et en Automatique (Inria)-CentraleSupélec-Centre National de la Recherche Scientifique (CNRS)-IMT Atlantique Bretagne-Pays de la Loire (IMT Atlantique), Institut Mines-Télécom [Paris] (IMT)-Institut Mines-Télécom [Paris] (IMT)-Université de Rennes 1 (UR1), Institut National des Sciences Appliquées (INSA)-Université de Rennes (UNIV-RENNES)-Institut National des Sciences Appliquées (INSA)-Université de Bretagne Sud (UBS)-École normale supérieure - Rennes (ENS Rennes)-CentraleSupélec-Centre National de la Recherche Scientifique (CNRS)-IMT Atlantique Bretagne-Pays de la Loire (IMT Atlantique)
Rok vydání: 2020
Předmět:
Research Subjects
Internet privacy
Context (language use)
Neuroimaging
brain imaging
ComputingMilieux_LEGALASPECTSOFCOMPUTING
050105 experimental psychology
general data protection regulation
03 medical and health sciences
0302 clinical medicine
Informed consent
Obtaining consent
Humans
0501 psychology and cognitive sciences
Radiology
Nuclear Medicine and imaging
030304 developmental biology
Computer. Automation
0303 health sciences
Radiological and Ultrasound Technology
business.industry
Information Dissemination
[SCCO.NEUR]Cognitive science/Neuroscience
05 social sciences
informed consent
[SCCO.NEUR] Cognitive science/Neuroscience
Brain
Data sharing
Editorial
Neurology
General Data Protection Regulation
Key (cryptography)
Neurology (clinical)
Human research
Human medicine
Anatomy
Psychology
business
Consent Forms
030217 neurology & neurosurgery
Zdroj: Human Brain Mapping
Human Brain Mapping, 2021, 42 (7), pp.1945-1951. ⟨10.1002/hbm.25351⟩
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, Huijser, D, Iglesia Vayá, M, Jancalek, R, Katsaros, V K, Kieseler, M, Maumet, C, Moreau, C A, Mutsaerts, H, Oostenveld, R, Ozturk-isik, E, Pascual Leone Espinosa, N, Pellman, J, Pernet, C R, Pizzini, F B, Trbalić, A Š, Toussaint, P, 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 . https://doi.org/10.1002/hbm.25351
Human brain mapping: a journal devoted to functional neuroanatomy and neuroimaging
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, Katsaros, V K, Kieseler, M-L, Maumet, C, Moreau, C A, Mutsaerts, H-J, Oostenveld, R, Ozturk-Isik, E, Pascual Leone Espinosa, N, Pellman, J, Pernet, C R, Pizzini, F B, Trbalić, A Š, Toussaint, P-J, 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
Human Brain Mapping, 42(7), 1945-1951. Wiley-Liss Inc.
Human Brain Mapping, Wiley, 2021, 42 (7), pp.1945-1951. ⟨10.1002/hbm.25351⟩
HUMAN BRAIN MAPPING
r-FISABIO. Repositorio Institucional de Producción Científica
instname
ISSN: 1065-9471
1097-0193
Popis: Online ahead of print; International audience; 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.
Databáze: OpenAIRE
Externí odkaz: