Not All Genetic Tests Are Created Equal

A number of factors play a role in deciding whether or not genetic testing is the right fit for you. Genetic privacy should be one of them.

A new article in Forbes outlines what you need to know about life insurance and your genetic test results.

The Genetic Information Non-discrimination Act (GINA) was passed in 2008 and protects your genetic information from employer and health insurance discrimination. But unfortunately, GINA is limited. Life insurance, long-term care, and disability are excluded, as well as members of specific populations (military, federal employees, etc.). This lack of complete coverage leaves many individuals wondering how their genetic information will be used by insurance companies.

With this, it’s important to keep in mind that not all genetic tests are created equal.

Direct-to-consumer (DTC) genetic tests, such as 23andMe, have been proven unreliable in terms of accuracy. One study published in Genetics in Medicine showed that 40% of DTC results were false-positive, meaning the result indicated a condition was present when in fact it was not.

Furthermore, these tests usually do not indicate a clinical diagnosis, and instead, may indicate an increased risk to develop a particular condition. Anyone who has received a health finding after a DTC test should speak to a physician or genetic counselor about confirming their result through a clinical test.

Individuals are always encouraged to undergo genetic testing with guidance of a physician or genetic counselor. The provider can review the benefits, limitations, and reliability of DTC testing, and determine what test is most appropriate. Guidance to interpret the results is also provided.

Luckily, when determining coverage, insurers are most interested in genetic tests that are ordered by a qualified medical provider and are considered a diagnostic tool. Furthermore, actual disease always outweighs risk for disease, so if you’ve already been diagnosed with a serious health condition, the results of genetic testing are unlikely to significantly alter your policy.

Purchasing life insurance prior to any type of genetic testing is always an option, but don’t let this prevent you from obtaining genetic testing that could lead to better, more proactive care, especially if it can reduce or prevent a serious complication from occurring.

If you are concerned about your privacy rights, talk to your physician or genetic counselor. If you already have a positive genetic test result, it is encouraged to shop multiple insurance carriers, as risk can be interpreted differently by each insurance company.