3 ms·
> It should be easier for people to opt-in to sharing their medical data This seems like a good compromise moving forward. Add a section on whatever HIPAA form
by michaelmior 3y ago
> It should be easier for people to opt-in to sharing their medical data
This seems like a good compromise moving forward. Add a section on whatever HIPAA forms you already need to sign that gives you the chance to opt in to use of anonymized data for medical research purposes.
I think for this to work, the law would need to clearly define how records must be anonymized, and provide penalties both for poor anonymization and for not clearly communicating to patients that this sharing is optional.
- maxehmookau 3y agoYep. I'm all for a better version of informed consent. "Can we provide your medical details in full to the following organisations?" "Can we provide an anonymised version of your record to them?" Yes. No. Abide by those wishes. It's pretty simple. Unfortunately big tech companies see the fines for handling data poorly as a cost of doing business, and not the punishment it was designed as. Until that changes, the status quo can't change.