emdupre
commented
5 years ago @kirstieJane @mih had a great thread on this a while back ! :smile_cat:
https://twitter.com/kirstie_j/status/1091024733125181440?s=19
Open jsheunis opened 5 years ago
emdupre
commented
5 years ago @kirstieJane @mih had a great thread on this a while back ! :smile_cat:
https://twitter.com/kirstie_j/status/1091024733125181440?s=19
jbpoline
commented
5 years ago interesting ! thanks for that link !
On Wed, May 1, 2019 at 8:24 PM Elizabeth DuPre notifications@github.com wrote:
@kirstie_jane had a great thread on this a while back ! 😸
https://twitter.com/kirstie_j/status/1091024733125181440?s=19
— You are receiving this because you are subscribed to this thread. Reply to this email directly, view it on GitHub https://github.com/ohbm/hackathon2019/issues/47#issuecomment-488516679, or mute the thread https://github.com/notifications/unsubscribe-auth/AACDE2DCEAF3FIUWUM7JILLPTIYCBANCNFSM4HJYDNTA .
jsheunis
commented
5 years ago Yes, great thread thanks for linking!
Extending Open-Brain-Consent to support GDPR requirements and include step-by-step examples
Stephan Heunis
Project Description
Responsible sharing of data and code that underlie the results of a scientific study is an important step towards improving research transparency, fostering inclusivity and building public trust in science. In health sciences, and neuroimaging research in particular, an important factor when sharing data is privacy of personal or sensitive data. Ethical review boards at research institutions are responsible for reviewing a study protocol and deciding whether it can continue based on its adherence to the relevant ethical and research integrity principles, wich typically include regulations on personal data privacy. In the European Union, such data privacy requirements are subject to the General Data Protection Regulation (GDPR) as implemented by its member countries.
Despite the increased importance that funders and instituions are starting to place on open science practices, no clear, thorough and openly available guides exist for publicly sharing neuroimaging data under GDPR. One resource, Open Brain consent, has rendered an important service by making template consent forms available in multiple languages with the aim of allowing "collected imaging data to be shared as openly as possible while providing adequate guarantees for subjects’ privacy". However, some aspects related to GDPR are lacking, e.g. more detailed information on the process of acquiring, processing and anonymising data; specifications on data processing and protection roles; and a detailed data privacy statement.
The overall goal of this OHBM hackathon project is to extend the content of Open Brain consent with GDPR-related templates and thorough real-world examples. Ideally, this additional information would serve as a step-by-step guide for researchers during the process of obtaining ethical approval for an EU-based study, specifically where the aim is to share neuroimaging data publicly. Some progress has been made previously, see issue 24 on the Open Brain Consent github page. Our goal is to extend this with (among others):
Skills required to participate
Anyone with experience in one or more of the following aspects could contribute:
Additionally, people with the following skills/attributes could also contribute, irrespective of previous experience:
Preparation material
We have started a google doc with links to background reading material, useful resources and preliminary notes. We will likely use this google doc throughout the hackathon. Please feel free to add your comments and content to this document.
Link to GitHub repo
This is the Github Repo of the existing Open Brain Consent website, with an explanatory ReadMe.
Communication
If you want to contribute to this project, please feel free to join the Brainhack Mattermost community server and join our existing communication channel "open_brain_gdpr" or find me (Stephan Heunis / jsheunis) with a direct message. During the hackathon we will keep a video call open continuously for remote participants. You can access this video call at any time via hangouts.