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My understanding based on arguments with a friend of mine who is a 23andMe executive, is that they argue that DNA data is not medical information, even when sol
by droithomme 7y ago
My understanding based on arguments with a friend of mine who is a 23andMe executive, is that they argue that DNA data is not medical information, even when sold to medical companies for medical purposes. Their argument is not that the data disclosure was authorized by the patient for a specific medical purpose. I disagree with him that DNA information is not medical data. But if it's simply not medical or even personal data at all then he's right, they can do with it as they please.
I really think this needs to be adjudicated because people believe judges even when the facts are obvious and the arguments on one side are entirely economically self-serving and absurd (as 23andMe's claims about this are IMO).
Also in my personal experience with medical providers, they provide me with "privacy agreements" they require I consent to before they provide services and these agreements typically say I consent to their giving my private medical data to third parties for unknown purposes unrelated to my treatment. I have been point-blank denied treatment from hospitals, emergency clinics, and specialists, several times because I have refused to consent to these. Coerced consent, given under threat of actual death, is not true consent. Courts don't recognize that and med-tech denounces my position. Massive legislation putting an end to this is necessary and I have zero hope that will happen since Congress is in the back pocket of the misnamed "health care" industry.
- balls187 7y agoThis is what HHS Gov states: Does the HIPAA Privacy Rule protect genetic information? Answer: Yes, genetic information is health information protected by the Privacy Rule https://www.hhs.gov/hipaa/for-professionals/faq/354/does-hipaa-protect-genetic-information/index.html https://www.hhs.gov/hipaa/for-professionals/faq/354/does-hip...
- droithomme 7y ago> Like other health information, to be protected it must meet the definition of protected health information: it must be individually identifiable and maintained by a covered health care provider, health plan, or health care clearinghouse. Yes, exactly, bingo, and there is the carefully crafted by expert congressional advisors loophole. Gene testing companies aren't any of these three categories, nor is virtually anyone else that is trading personally identifiable genetic data.