The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data.
brain imaging
general data protection regulation
informed consent
Journal
Human brain mapping
ISSN: 1097-0193
Titre abrégé: Hum Brain Mapp
Pays: United States
ID NLM: 9419065
Informations de publication
Date de publication:
05 2021
05 2021
Historique:
revised:
11
01
2021
received:
25
08
2020
accepted:
12
01
2021
pubmed:
2
2
2021
medline:
1
2
2022
entrez:
1
2
2021
Statut:
ppublish
Résumé
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.
Identifiants
pubmed: 33522661
doi: 10.1002/hbm.25351
pmc: PMC8046140
doi:
Types de publication
Editorial
Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't
Research Support, U.S. Gov't, Non-P.H.S.
Langues
eng
Sous-ensembles de citation
IM
Pagination
1945-1951Subventions
Organisme : NIBIB NIH HHS
ID : P41 EB019936
Pays : United States
Organisme : NIMH NIH HHS
ID : R01 MH096906
Pays : United States
Informations de copyright
© 2021 The Authors. Human Brain Mapping published by Wiley Periodicals LLC.
Références
Hum Brain Mapp. 2021 May;42(7):1945-1951
pubmed: 33522661
Hum Brain Mapp. 2020 Jun 1;41(8):1985-2003
pubmed: 31930620
Neuroimage. 2011 Sep 15;58(2):620-9
pubmed: 21741482
Eur Radiol. 2020 Feb;30(2):1062-1074
pubmed: 31691120
Clin Genet. 2014 Sep;86(3):199-206
pubmed: 24646408
Nat Commun. 2014 Sep 16;5:4800
pubmed: 25226282
Bull World Health Organ. 2001;79(4):373-4
pubmed: 11357217
Nat Commun. 2019 Jul 23;10(1):3069
pubmed: 31337762
Nat Commun. 2018 Jul 19;9(1):2818
pubmed: 30026557
Sci Rep. 2020 Jul 28;10(1):12598
pubmed: 32724046
R Soc Open Sci. 2016 Apr 20;3(4):160109
pubmed: 27152225
Front Neuroinform. 2013 Jul 08;7:12
pubmed: 23847528
Eur J Hum Genet. 2019 Aug;27(8):1159-1167
pubmed: 30996335
Hum Brain Mapp. 2019 Apr 1;40(5):1391-1402
pubmed: 30600573
Brain Imaging Behav. 2014 Jun;8(2):153-82
pubmed: 24399358
Science. 2013 Jan 18;339(6117):321-4
pubmed: 23329047
Front Neurosci. 2016 Aug 19;10:365
pubmed: 27594820