In June I attended a workshop on #research on and through Mastodon by @ccamara and @__nate__. Part of the discussions during that workshop focused on understanding how computational research could happen on the Fediverse. Prompted by the upcoming mastodon 4.2 release, I wrote down some thoughts on what that can mean for scraping-based academic research on the fediverse.
My tldr: this type of research is going to happen regardless of whether people want it or not. Calls for changing research methods are insufficient. Instead, we could focus on mechanisms for cooperative actors to better navigate consent computationally. The new 4.2 toot:indexable flag possibly provides a model for this.
I don't expect you'd get push back for suggesting that consent is needed in order to collect the data in the first place. I think it's more a mentality of "if the data exists then it's ok to analyze it". the spirit seems similar to the "information wants to be free" crowd. tell them they aren't allowed to share something they'll most likely ask you what you're trying to hide and take the prohibition as a challenge
keep in mind that where this comes up for medical research is the massive electronic databases that many large providers maintain. personally I don't think those should exist in the first place (as a society we acknowledge it's highly sensitive but then make it nearly impossible to opt out) but that's a separate issue