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“Passed in 2008, a federal law called the Genetic Information Nondiscrimination Act (GINA) made it illegal for health insurance providers in the United States to use genetic information in decisions about a person's health insurance eligibility or coverage.”

Also prevents employment discrimination based on genetics.

https://www.genome.gov/about-genomics/policy-issues/Genetic-...

(disclosure: have had my DNA sequenced by multiple organizations, and it's publicly available)



What I worry about is having this data laundered through a couple of vendors.

"How could we know our vendor's vendor was using genetic information in their proprietary risk score?"

"How could we know our client's client was using our score for life, health, or auto insurance/employment/lending/etc decisions?"

It's a "can't unring a bell" situation and the gaps in the regulations and the incentives for bad behavior are enormous.


Because insurance is regulated against this. They can’t just Willy-nilly get data and “scores” from uncontrolled sources.


Oh sweet summer child. The astute business person will construct a score that happens to correlate with these known genetic defects and then sell it to insurance anyway with the plausible cover correlated source.


That really isn't how most health insurance works in the US now. As far as I know, there really is no such think as refusing health insurance to an eligible person. Now other types of insurance like life, home, auto, those are a different story. But regular health insurance just has to accept your application.


Perhaps health insurance companies can't do this, but I know for absolute certain no one is looking closely enough at every little company's hiring decisions to find out if someone is doing this.


Mortgages in 2008 were regulated too


Subprime mortgages aren’t illegal?

Insurers have auditing requirements to prove what goes into the policy calculation. It is impossible to hide illegal data use at any meaningful scale, and no insurance agency is looking to save a buck on a small number of clients.

Your comparison is irrelevant.


Illegal or not, look what happened after 2008. Clearly regulation has failed, so there is no reason to think it won't fail in the case of DNA data.


There was never regulation to begin with.


I am absolutely sure there is no one who would call mortgages "unregulated" in 2008. That the regulation is insufficient was determined later - and way too late.


Note that the law does *not* apply to other types of insurance. Life insurance, for example




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