Obviously, medical privacy is a great default, and modern American law makes you give a waiver for your information to be shared. But when great defaults are given the full force of law, we miss out on all the benefits of a high-trust, high-civility society – in this case, all the humane, pro-social ways we might use medical data without explicit consent.
To have a child with cancer is a burden so heavy that housing, of all things, doesn't matter. Ronald McDonald Houses take in families that need to be near hospitals for treatments, and make their burden a little bit lighter. A true act of grace, repeated over and over, every day. No one should have to worry about stuff like that, and helping them not fiddle with even more bills, and even more paperwork, is charity at its purest.
But hospitals in America can't send a list of all the families currently going through hell to the local Ronald McDonald House. They'd have to sign a HIPAA release, which probably means talking to someone who asks slightly invasive questions about their housing, at the hospital. It's just another thing they have to deal with, even if the burden is still much lower. I'm sure Ronald McDonald Houses would appreciate knowing their doors are open to anyone that needs them, with all the hassle diverted onto trained and capable nurses sending an email with family names every morning. We could have that, if we wished. But we chose medical privacy laws.
Anonymized data, used for medical research, is where everyone starts these discussions. And yes, I know that's important, but the families in distress is what inspired me to write this. Better research is just a perk. All of the big data analyses we can do, those will save lives. Running thousands of split tests on borderline medical decisions could make medicine improve constantly, in hundreds of small ways. The cost of keeping the data secret is measured in lives, but for the most important use cases, the researchers may find a way. We should consider this cost, too, though. It's substantial, and only gets bigger every year.
And now I have to talk about the Golden State Killer. The disgusting crimes of a single lunatic could have been stopped much, much sooner with better access to this data. If it was anonymized, you could even let civilians follow clues without risking the privacy of anyone until a judge issues a warrant to de-anonymize the record. No one wants a scary omniscient police state, but everyone could agree, extremely serious crimes ought to have investigations super-powered enough to have this option, so long as the intrusion is as minimal as possible and the need truly desperate.
I do support medical privacy laws. HIPAA has some specific regulatory problems, but does much more good than harm. But these exceptions to the rule are worth talking about, because I think we ignore the downsides to our preferred policies, and forget that acts of kindness will always outnumber reprobates and creeps.