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I believe under HIPAA, you have the right to access any of your medical data. If you really want your data, I would get a lawyer to write a nasty letter to them

I believe under HIPAA, you have the right to access any of your medical data. If you really want your data, I would get a lawyer to write a nasty letter to them demanding it.

angry_moose 3y ago
So far, genetic testing firms haven't been considered to be covered by HIPAA: https://lawforbusiness.usc.edu/direct-to-consumer-generic-testing-companies-is-genetic-data-adequately-protected-in-the-absence-of-hippa/ https://lawforbusiness.usc.edu/direct-to-consumer-generic-te...
astura 3y ago
As usual when HIPAA is brought up, you're wrong. HIPAA is the most misunderstood law in America. Hint, the "I" in HIPAA stands for "insurance." A general rule - if an insurance company isn't involved HIPAA doesn't apply. HIPAA is a law that regulates insurance companies and entities that deal directly with insurance companies, not "medical data." HIPAA doesn't apply to 23andMe. At all. HIPAA only applies to "covered entities" - https://www.hhs.gov/hipaa/for-professionals/covered-entities/index.html https://www.hhs.gov/hipaa/for-professionals/covered-entities...
- kube-system 3y ago
  > A general rule - if an insurance company isn't involved HIPAA doesn't apply. Not exactly. If you go to most any healthcare provider, and pay out-of-pocket, HIPAA still applies. More accurately, HIPAA applies to any healthcare providers who transmits any health information in electronic form in connection with a transaction covered by 45 C.F.R. §160.103. Or in other words, basically every healthcare provider is also a covered entity, unless they're completely 100% cash only and don't take insurance for anyone ever. Do these even exist? Although, still 23andMe wouldn't be covered because they're not providing healthcare services.
  - astura 3y ago
    >basically every healthcare provider is also a covered entity, unless they're completely 100% cash only and don't take insurance for anyone ever. This is correct - I should have been more specific. If a business doesn't take insurance then HIPAA doesn't apply. Not that insurance isn't involved in a specific transaction. I've edited my GP comment to be more specific. >Do these even exist? Yes, absolutely. https://www.healthline.com/health-news/these-doctors-accept-only-cash https://www.healthline.com/health-news/these-doctors-accept-... https://www.nytimes.com/2012/11/24/your-money/dealing-with-doctors-who-accept-only-cash.html https://www.nytimes.com/2012/11/24/your-money/dealing-with-d... https://www.fawkeshealth.com/insights/are-cash-only-clinics-the-new-healthcare https://www.fawkeshealth.com/insights/are-cash-only-clinics-... So-called "pill mills" are almost always cash-only when they operate. There's also health centers on university campuses that are funded through student fees and don't bill insurance.

I believe under HIPAA, you have the right to access any of your medical data. If you really want your data, I would get a lawyer to write a nasty letter to them demanding it.

angry_moose 3y ago

So far, genetic testing firms haven't been considered to be covered by HIPAA: https://lawforbusiness.usc.edu/direct-to-consumer-generic-testing-companies-is-genetic-data-adequately-protected-in-the-absence-of-hippa/ https://lawforbusiness.usc.edu/direct-to-consumer-generic-te...

astura 3y ago

As usual when HIPAA is brought up, you're wrong. HIPAA is the most misunderstood law in America. Hint, the "I" in HIPAA stands for "insurance." A general rule - if an insurance company isn't involved HIPAA doesn't apply. HIPAA is a law that regulates insurance companies and entities that deal directly with insurance companies, not "medical data." HIPAA doesn't apply to 23andMe. At all. HIPAA only applies to "covered entities" - https://www.hhs.gov/hipaa/for-professionals/covered-entities/index.html https://www.hhs.gov/hipaa/for-professionals/covered-entities...

kube-system 3y ago
> A general rule - if an insurance company isn't involved HIPAA doesn't apply. Not exactly. If you go to most any healthcare provider, and pay out-of-pocket, HIPAA still applies. More accurately, HIPAA applies to any healthcare providers who transmits any health information in electronic form in connection with a transaction covered by 45 C.F.R. §160.103. Or in other words, basically every healthcare provider is also a covered entity, unless they're completely 100% cash only and don't take insurance for anyone ever. Do these even exist? Although, still 23andMe wouldn't be covered because they're not providing healthcare services.
- astura 3y ago
  >basically every healthcare provider is also a covered entity, unless they're completely 100% cash only and don't take insurance for anyone ever. This is correct - I should have been more specific. If a business doesn't take insurance then HIPAA doesn't apply. Not that insurance isn't involved in a specific transaction. I've edited my GP comment to be more specific. >Do these even exist? Yes, absolutely. https://www.healthline.com/health-news/these-doctors-accept-only-cash https://www.healthline.com/health-news/these-doctors-accept-... https://www.nytimes.com/2012/11/24/your-money/dealing-with-doctors-who-accept-only-cash.html https://www.nytimes.com/2012/11/24/your-money/dealing-with-d... https://www.fawkeshealth.com/insights/are-cash-only-clinics-the-new-healthcare https://www.fawkeshealth.com/insights/are-cash-only-clinics-... So-called "pill mills" are almost always cash-only when they operate. There's also health centers on university campuses that are funded through student fees and don't bill insurance.