And more importantly, _who_ the people are. Yeah, I want full legal names. I want someone to name in a lawsuit if things go wrong or my data is leaked. I want personal legal culpability from everyone interacting with that data.
I'm not. Getting pretty tired of having the meeting point of getting buttfucked and not buttfucked being buttfucked, but with lube.
You step forward.
He steps back.
"Meet me in the middle," says the unjust man.
Thanks to the likes of Facebook, Google and their ilk starting to stick their filthy paws into the most private medical data some years ago my answer now is always a resounding HELL, NO!
I always feel bad about it, because it really shouldn't be that way, but thanks to the slimy shenanigans of the tech brothership I just don't see a viable alternative to that answer.
What bugs me is my urge to explain to the poor admin to who I'm handing the form the why this is out of the question.
I made the exact same change in my behavior as well. I already felt that I was making a sacrifice by exposing my data to the likes of drug companies and such. Exposing my data to the likes of a FAANG-style company is simply a nonstarter.
An actual written request for consent from a research institution, telling me exactly what data they intend to access, how they will access it, how many people will have access, for how long, and what they will do with the data / results after they are done. One that I can at my option sign and send back, or trash.
I'd in all likelihood say yes! But as a patient, I deserve the right to say yes or no. "Lives might be lost" is simply not justification for obtaining it.
This doesn't seem that unreasonable to me. It balances the need for research with the patient's need for privacy.