this post was submitted on 10 Nov 2023
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23 and me isn't a healthcare provider and not a "covered entity" under HIPAA . So the protections that would apply if you got genetic testing through your doctor from an actual medical genetic testing company don't actually apply to 23 and me. Though the company maintains it follows federal regulations voluntarily "as a courtesy."
So don't worry, your genetic data is protected by the good will of venture capital tech bros.
Any unregulated entity that swears they're doing the right thing is straight up lying
Yeah 23 and me wanted to have their cake and eat it too. They wanted to run tests for genetic diseases but not have to comply with any of the regulations that would entail, including critical things like HIPAA, offering proper informed consent before testing (which is not just a form but is an actual conversation with a medical professional), and offering up included follow-up genetic counseling services for individuals and their families. This is critical for genetic testing especially, which usually have results that are far more complicated than just a simple negative or positive. Basically just the airbnb or uber models of skirting regulations for profit but applied to genetic testing. FDA stopped them though, so instead of complying with regulations there for good reason they cut out the actual medical tests and now just compile things like, your risk of heart disease may be ~4% instead of ~3% because of this SNP marker we found. All so that the FDA and others can't regulate them like true medical testing companies.