Hey @azuredominique sorry I’m finally catching up now! Please feel free to get my attention in Slack, it’s a good way to get my attention these days. (So many communication channels…)
1 – IRB & Open Humans
Open Humans has it’s own consent page that I have to accept when joining the project-- I thought that this was an OH specific IRB on your end, is that correct? I can send you guys the study IRB we can briefly chat about if you think it needs amending to suit anyone who might join?
We don’t run any IRB study. We used to have an IRB for our “public data sharing” feature – which was framed as a study – but that was a tenuous claim, it’s not “research” to give people an ability to share data (indeed, the IRB questioned it at the time). That study framing has been retired.
I or @gedankenstuecke could probably give feedback on study protocol and consent form to see if it seems reasonably accurate and not conflicting with our site (which is generally pretty open-ended). You’ll have to share and ask, we don’t
2 – Regarding data and deletion/withdrawal & other information, I think maybe a bigger issue is that the informed consent form is never seen/signed by someone joining via https://qcycle.herokuapp.com ?
Don’t you want someone to sign the consent before (or when) they join & share data with the project via Open Humans?
Otherwise, your project will start receiving data from people that didn’t consent to the research study?
Maybe the front page of the site should be the consent form and a button that says “I agree”?
(It’s possible I’m not clear on what the plan is for having this project approved and visible, available for all Open Humans members to join.)
4 – the “vcf” is here, as is the slack mention: https://qcycle.herokuapp.com/about