Open Brain Consent
Overview
The Open Brain Consent is a community-developed initiative providing model informed consent forms for neuroimaging and brain electrophysiology research, designed to permit broad open sharing of participant data on repositories such as OpenNeuro. Initiated around 2012 and endorsed by INCF, it addresses a practical barrier to open neuroscience: the absence of standardised, legally compliant participant consent language that explicitly authorises data sharing beyond the immediate study. The forms are maintained on GitHub under the Center for Open Neuroscience, are available in multiple languages, and exist in two variants: a general “ultimate consent” for maximum sharing flexibility, and a GDPR-specific edition for research conducted in the EU and EEA. The project is described in Bannier et al. (2021) in Human Brain Mapping (doi:10.1002/hbm.25351).
Consent Form Variants
The general “ultimate consent” permits sharing of de-identified data as broadly as possible, with no time limit or geographic restriction on reuse. The GDPR edition adds language addressing specific regulatory requirements: explicit identification of the data controller, legal basis for processing under Article 6(1)(a) and Article 9(2)(a), the right of withdrawal, and storage and access conditions consistent with Article 89 research safeguards. Both variants are designed to be adapted to local institutional requirements while retaining the consent language necessary for open sharing compliance.
Connections
Resources
- https://open-brain-consent.readthedocs.io
- https://github.com/con/open-brain-consent
- https://doi.org/10.1002/hbm.25351 (Bannier et al. 2021, Human Brain Mapping)