The costs of having your DNA analyzed for known genetic diseases has plummeted in recent years – to under $1,000.  That is good news for those who might want their DNA analyzed.  But some people have avoided being tested out of privacy concerns.

To protect the privacy of your genetic information, in 2008 Congress passed the Genetic Information Nondiscrimination Act (GINA).  GINA stipulates that employers and health care providers cannot seek the results of genetic testing, and cannot discriminate on the basis of genetic information.  It sounds good, right?

Wrong!   It turns out that GINA does not apply to life, disability, or long-term care insurers!   If you apply for life insurance after having your DNA tested, the insurance company can require you to answer truthfully (“Have you had your DNA tested?”) and then compel you to provide the results of your DNA test before deciding whether or not to insure you.   And if your genetic profile indicates that you might be at risk for a specific genetic disease, you might find yourself uninsurable even though you are currently healthy.

I was surprised to learn that congressional sponsors of GINA were aware of this when GINA was passed in 2008.   Apparently, it took more than a decade to get GINA approved by Congress.  My guess is that there was intense opposition to GINA from the insurance industry.  In the end, the bill’s sponsors had to settle for just part of what they wanted (non-discrimination in health insurance and employment), and give up on the rest.

Truthfully?   GINA doesn’t fully live up to its name.  And that’s unfortunate.

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