Journal
HUMAN BRAIN MAPPING
Volume 42, Issue 7, Pages 1945-1951Publisher
WILEY
DOI: 10.1002/hbm.25351
Keywords
brain imaging; general data protection regulation; informed consent
Funding
- US National Science Foundation [NSF 1429999]
- NIH [NIH-NIBIB P41 EB019936]
- COST association [CA-18206]
- INTER-EXCELLENCE program, subprogram INTER-COST of the Ministry of Education, Youth and Sports CR [LTC20027]
- NIMH [R01MH096906]
- Neurocenter Finland
- International Laboratory of Social Neurobiology [ICN HSE RF 075-15-2019-1930]
- ReproNim project
Ask authors/readers for more resources
Obtaining consent from participants to share research data is crucial to respect privacy. The Open Brain Consent project provides information about data sharing options and tools to researchers in the brain imaging community.
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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