Do these Genes Make Me Uninsurable?

If you are a true crime aficionado like Amy, then you probably already know that DNA-testing played a major role in catching the Golden State Killer. If you are unfamiliar with the details, here’s the Cliffs Notes version:

Law enforcement secured a DNA profile of the Golden State Killer from genetic material recovered from one of his victims. They uploaded the DNA profile to two different DNA genealogical sites. Investigators discovered a familial link (second cousins) to the DNA profile. They visited one of the genetic relatives, obtained a DNA sample direct from her, and began building out a family tree. Investigators identified six male cousins as potential culprits, and from there, narrowed it down based on eye color. Joseph DeAngelo Jr. was the only cousin with blue eyes. You can read more about the use of DNA testing for the case here.

The legal implications of the case are quite interesting considering that the genetic material submitted by individual consumers to these genealogical sites—and the ancestral links revealed—are supposed to be private. Yet, law enforcement was able to find a notorious serial killer because his second cousin submitted her DNA to one of these companies. Fascinating!

Genetic testing is not just about finding long lost family members or criminal masterminds, though. It’s also commonly used to reveal molecular and chromosomal abnormalities (mutations) that could signify certain health issues. For example, 23andme.com advertises that, through genetic testing, they can discover if you have an increased risk for certain health conditions, help you understand how your body processes certain medications, and identify if you are a carrier for various genetic variants that could affect your children.

This is all good news, right? Isn't this helpful information for us to know about ourselves? Well, the answer might not be so clear-cut considering the negative impact test results could have on your insurability.

The good news is that the Genetic Information Nondiscrimination Act (GINA) prohibits health insurance providers from considering your genetic information when evaluating your health insurance eligibility. GINA also forbids genetic discrimination for employment, though it is important to note that GINA does not apply to small companies with fewer than 15 employees.

The not-so-good news is that GINA does not apply to all types of insurance. If you are applying for long-term disability, short-term disability, long-term care insurance, or life insurance, for example, then the insurance company can request your medical history and can also require you to reveal the results of any genetic testing.

Suppose your genetic test reveals you are at risk for Huntington's Disease or Alzheimer's Disease or aggressive cancer. The insurance company may decide you are too much of a risk and decline coverage or charge you a higher premium for its products.

For its part, the insurance industry claims not to be interested in direct-to-consumer genetic tests, only those tests ordered by a medical provider and completed by a clinical lab. Still, it doesn’t hurt to be cautious. If you are considering applying for new insurance, then perhaps hold off on opening that at-home DNA kit a little while longer since it is unlikely that the insurer will cancel your coverage—once you have been approved—based on the results from your genetic test. But if you do the test and fail to report the results, that could be sufficient grounds for the insurer to revoke the policy.

One last warning: many of these companies (AncestryDNA and 23andMe included) monetize your medical data by partnering with biomedical research firms. So, be sure to read all the fine print about how your genetic information can be used before you swab your cheek!

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