Make open data sharing a no-brainer for ethics committees.

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Statement of the problem

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 the federal regulations, such as 45 Code of Federal Regulations Part 46 <http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html>_ in US.

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 is 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 do 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) nowadays require public data sharing, but do not provide explicit instructions on how.

Overall approach

We would like to facilitate neuroimaging data sharing by providing an "out of the box" solution addressing aforementioned human research participants concerns and consisting of

• widely acceptable consent form allowing deposition of anonymized data to public data archives

• collection of tools/pipelines to help anonymization of neuroimaging data making it ready for sharing

Consent form

Goal minimum

To address this problem we collected :ref:`chap_consent_samples` which have
been previously approved by ethic committees in different
institutions.  Such samples can be used for
similar *ad-hoc* consent forms at other institutions so they fulfill
the desires of any particular committee, while allowing public sharing
of collected data.

Ultimate goal

:ref:chap_consent_ultimate and :ref:chap_consent_ultimate_gdpr were created to provide suggested consent form(s) for different use-cases, jurisdictions, and/or guidelines.

If regulated by the same federal/state laws, there is really no objective reason why there could be no consensus among IRB committees within the same jurisdiction. Although somewhat a utopian statement, we hope that with examples/precedent cases and possibly your enthusiastic involvement we cold achieve our goal.

Anonymization

Data must be de-identified before distribution. We will collect information on :ref:existing <chap_anonymization_tools> and possibly establishing an ultimate easy to use pipeline to standardize anonymization of neuroimaging data to simplify data sharing.

Useful links

• http://en.wikipedia.org/wiki/Institutional_review_board
• http://www.nsf.gov/bfa/dias/policy/hsfaqs.jsp

.. link list

Issues <https://github.com/datalad/open-brain-consent/issues> | Pull requests <https://github.com/datalad/open-brain-consent/pulls> | Build status <http://travis-ci.org/datalad/open-brain-consent> | Website <https://open-brain-consent.readthedocs.org>

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