Currently writing our Regional ethics application in which we ask for permission to share anonymized brain data openly, a first in Denmark to my knowledge. So grateful for this consortium on open brain data consent forms!! open-brain-consent.readthedocs.io/en/stable/
If successful, our application will become a template for others at @CFIN_AU who would like to share their data. Feels really great to be pushing this forward but also pretty scary.
@CFIN_AU Essentially our approach is to share anonymized (skull stripped, no identifying data) brain, behavioral, and physio (Ecg, respiration, pupil, etc) data but NOT what DK law considers to be 'persondata' e.g., sexual orientation, political beliefs, psych symptoms.
@CFIN_AU These data will be stored instead using pre-approved secure procedures (e.g., redcap) and available only upon request and the establishment of an Aarhus University approved data sharing agreement (requires lawyers basically).
@CFIN_AU We argue this will mitigate the risks of a future possible 'brain de-anonymization', e.g. a hacker gets your external medical scan w/social security and uses it to find your anon research scan e.g. with ML techniques.
@CFIN_AU Second, thanks to wonderful COBIDAS guidelines and consoritum for consent forms, we can outline exactly these risks vs benefits to the participant using the 'ultimate consent form' found here: open-brain-consent.readthedocs.io/en/stable/ - after careful translation & adaption to the DK context, ofc
@CFIN_AU I think this approach is the most likely to succeed, and it provides a reasonably trade-off of transparency and security within the context of what is possibly under the (extremely conservative) danish privacy and data protection laws.
@CFIN_AU It means that, researchers will be able to use our brain and body data to validate future analytic approaches, verify our own published pipelines, and so on. For more involved new analyses (e.g., with demographic data) they would need establish a research agreement.
@CFIN_AU Which is fine, and we can explicitly state the procedure for this in our papers and on our website. It just requires time and some university lawyers to agree.
@CFIN_AU Anyway, it will be very interesting to see what the regional ethics committee says. We submit December 16th, which will give us at least 4-5 chances to go back and forth before our project start next July.
