3 ms·
I've been keen to see how the GDPR and CCPA play out. Hopefully better than HIPAA, FERPA, etc. Providence Hospital in Portland OR (details?) had a big (for the
by specialist 6y ago
I've been keen to see how the GDPR and CCPA play out. Hopefully better than HIPAA, FERPA, etc.
Providence Hospital in Portland OR (details?) had a big (for the time) data leak about the time I started doing medical records. They settled out of court. I contacted both sides and tried to reach the admins, to ask what fix they settled on.
"Try harder next time."
Terrific.
We geeks creating the infrastructure for electronic medical record interchanges resigned ourselves to the inevitable massive data leak. I spent a lot of effort trying to figure out how to protect patient privacy.
I eventually determined there's only one technical solution, based on strategies from Translucent Databases book. (TLDR: field level encryption for all data at rest, just like proper password storage.)
But there's no social, legal, or cultural protection. And the small legal change (globally unique person identifiers) we'd have to do for the sole workable technical solution is strenuously opposed across the political spectrum.
So. My plan now is to rethink the entire stack. Extend property rights to PII. Let accounting fix what algorithms couldn't.
If someone divines a better plan, I'm totally on board. As in "shut up and take my money". But I'm not holding my breath.
FWIW, one of my besties wrote a book on privacy. My proposal makes his head explode. Apoplectic. So I get the push back. But 15 years later, no one, including him, have a better idea. Better as in feasible, actionable.
If you've got something, please share.
- kube-system 6y agoThat's an interesting idea -- property rights for PII. Of the four main IP types we have today, PII is probably most similar to trade secrets. Maybe since companies have rights to their secret information -- we could recognize a 5th type of IP for PII, similar to trade secrets, but for individuals?
- specialist 6y agoI support anything remotely similar to what you're proposing. I just can't get over the case of Henrietta Lacks. https://en.wikipedia.org/wiki/Henrietta_Lacks https://en.wikipedia.org/wiki/Henrietta_Lacks TLDR: The immortal cells central to cancer research are hers. Unacknowledged. The debt we owe this woman is immeasurable. Yet she and her family have no claim. How many more Lacks are there? There's a wide band between a record of my shopping habits and this woman's genetic code. But the principle is the same. If someone's making a buck off my data, I want my cut.