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by ProjectArcturis 865 days ago
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.
2 comments

So far, genetic testing firms haven't been considered to be covered by HIPAA:

https://lawforbusiness.usc.edu/direct-to-consumer-generic-te...

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...

> 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. ยง160.103. 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.

>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-...

https://www.nytimes.com/2012/11/24/your-money/dealing-with-d...

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.