Browsing: Question about whether/how IRBs consider Terms of Service agreements
Michelle De Mooy
I'm looking into how (and whether) IRBs consider an app's Terms of Service provisions when doing an ethical review. Does anyone know of standards or guidance for IRBs on this subject? I found this: https://nextbison.wordpress.com/2016/02/26/tos/ but very little else. Any help is appreciated!
Your question is the reason I became involved with CORE. Essentially, there is no go-to "guidance" available to IRB's from OHRP on this topic. The Good News is you found CORE so hopefully the CORE community, and past CORE postings can provide you with some guidance.
Common concerns I found were typically regarding data sharing, data access, which raised Privacy and Confidentiality concerns. Another concern was what happens to the data when a subject chooses to withdraw from the research study, what is the process for removing/or not removing data from the application. At times I would have to have our legal counsel/ compliance get involved, who would provide further management strategies to the design of the research protocol- Data Use Agreements, Contracts, etc.
Happy to discuss your scenario in further detail.
As Rubi mentions, there's very little concrete guidance on this. I'm afraid I can't speak to what IRBs are doing, although PRIM&R leadership may be able to tell you whether there is specific guidance in this area.
Meanwhile, the ACM SigCHI Working Group on Research Ethics put together an update to Amy Bruckman's earlier post, which you already found: https://medium.com/sigchi-ethics-committee/do-researchers-need-to-follow-tos-f3bde1950d3c