The Health Insurance Portability and Accountability Act, a landmark 1996 patient-privacy law, only covers patient information kept by health providers, insurers and data clearinghouses, as well as their business partners. At-home paternity tests fall outside the law’s purview. For that matter, so do wearables like Fitbit that measure steps and sleep, testing companies like 23andMe, and online repositories where individuals can store their health records.
Advances in technology offer patients ways to monitor their own health that were impossible until recently: Internet-connected scales to track their weight; electrodes attached to their iPhones to monitor heart rhythms; virtual file cabinets to store their medical records.
“Consumer-generated health information is proliferating,” FTC Commissioner Julie Brill said at a forum last year. But many users don’t realize that much of it is stored “outside of the HIPAA silo.”
Via Pharma Guy