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I understand the theoretical concerns in these cases, but IMO it does not weigh heavily against the (conservatively) hundreds of thousands of annual deaths due to hindered medical research.

It's hard to overstress enough how impossible it is to do even basic research across institutional health datasets, even you're a giant organization with a compliance team. It's soul-draining and frankly the reason a lot of smart people jump ship and work in finance or crypto or whatever, where you can accomplish something even if it's goofy.



You're not addressing the root concern which is that healthcare is notoriously insecure. Approaching this as "who cares if things get leaked" instead of improving security of records is why getting data is impossible.


That's your root concern, not mine. My root concern is that people are dying for bad reasons.


What's my or your biggest concern is irrelevant. Patient data security is why you can't get the data you say you need. That is just a fact and I would think energy is better served towards improving the handling of patient data if you want easier access to that data for research purposes.


I worked at Datavant for 3 years building a network for deidentified data exchange.


Nitpicking but he gave you practical examples of stuff that already happened, not theoretical ones.


Those are both theoretical examples of what people might want do with re-identified medical data. They are not demonstrated harms of things that happened in real life.




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