Madeline reached out to me on Twitter and asked me to jump in here. Thanks Madeline!
I'm all for this. I am one of many people running an interesting citizen science research platform. We do genome+fitness+diet integration. We have a neat genome interpretation search engine, and we even just launched an app that allows diet logging by recognizing food in photographs.
But this is all built in part time completely unfunded! I think that compared to a lot of well-funded university projects we have done a lot of stuff, but the lack of funding also makes IRB a completely unaffordable option.
I think that with chronic diseases killing millions of people per year, that people like me will continue starting projects like this, and that the personal passion derived from ones suffering from chronic diseases will lead to huge innovations that may happen outside of traditional institutions. The question then becomes, how do we allow amateur citizen science projects like mine flourish in a manner that is also legally and ethically overseen?
Its a deep problem of governance that keeps me up at night. I constantly struggle with questions about whether or not I should keep doing this alone, or if I should allow a more traditional institution endocytose my project and give it the more structured framework it needs to truly thrive.
If you guys go down any routes of making an open IRB, Id be happy to participate. It might involve simply a community of people who 'peer review' eachothers terms of service, but that might be inwardly biased.
Ernesto would have good opinions on this matter. I think I'll ping him.