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Comment by robg | Hacker News Reader

Sadly, this is the most cynical view, that while valid, I have no choice but to fight against to see medical progress. I also work in this area and after a decade as a publishing neuroscientist where we were bound by HIPAA rules and my universities were liable if there was a breach.

I care greatly, and so my company does, about ensuring anonymity and learning from the data as much as possible, if participants continue to share. We assume anonymity before we touch one bit of data. And users always have the option of using our products without sharing anything at all.

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To add another datapoint: I work for a large medical device manufacturer. We often need patient databases for debugging problems in the field. Although everyone who gets access to the raw data is HIPAA trained periodically (if your training expires, so do your data access credentials) we have implemented a "download database" feature that scrubs all patient identifying data before it's transmitted over the line.

Sure, there may be some edge cases where we need that ID stuff (haven't come across it in the years we've been doing this), but the point is that we take patient confidentiality very seriously (and the business takes being dinged for a HIPAA violation just as seriously).

It may sound fluffy and Pollyanna-like, but it's hard to be successful in this field without genuinely caring about the patient at the other end of your software.

I absolutely agree with you. Medical progress depends on sharing information between service providers and those researches, etc that can produce actionable results from such data.

I'm trying to give the (necessary) counterpoint: small scale stewards or medical data (often) tend to take an approach of handling patient data centered on cutting costs. Having worked in both the financial and medical industries, I can attest firsthand how there is a (frighteningly widespread) disregard for privacy information.

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