The ideology of open and reproducible science makes its ways into various fields of science. Neuroimaging is a driving force today behind many fields of brain sciences. Despite possibly terabytes of neuroimaging data collected for research daily, just a small fraction becomes publicly available. Partially it is because management of neuroimaging data requires to confirm to established legal norms, i.e. addressing the aspect of research participants privacy. Those norms are usually established by institutional review boards (IRB, or otherwise called ethics committees), which are in turn "governed" by national, federal and supra-national regulations.
Flexibility in interpretation of original regulations established in the past century, decentralization of those committees, and lack of a "community" influence over them created the problem: for neuroimaging studies there was no commonly accepted version of a Consent form template which would allow for collected imaging data to be shared as openly as possible while providing adequate guarantees for research participants' privacy. In majority of the cases, used Consent forms simply did not include any provision for public sharing of the data to get a "speedy" IRB approval for a study. Situation is particularly tricky because major granting agencies (e.g. NIH, NSF, RCUK) nowadays require public data sharing, but do not provide explicit instructions on how.
To facilitate neuroimaging data sharing, we providing an "out of the box" solution addressing aforementioned human research participants concerns and consisting of
- widely acceptable consent forms (with various translations) allowing deposition of de-identified data to public data archives
- a template data user agreement (if your repository allows DUA instead of a licence)
- collection of tools/pipelines to help de-identification of neuroimaging data making it ready for sharing
You can read a summary of this work in our paper: The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data
Every kind of contribution to this effort is welcome! Please find information on how to contribute in the contributing chapter.
Please find the recommendations and resources we have assembled at open-brain-consent.readthedocs.io.
Thanks goes to these wonderful people (emoji key):
This project follows the all-contributors specification. Contributions of any kind welcome!