Q: Can insurance companies find and use information from my direct-to-consumer genetic test?
A: In the past, genetic tests were only available as a part of formal medical care. But today, kits from genetic testing companies such as 23andMe are available for direct purchase and are even marketed around the holidays as a great gift idea.
While many people purchase these tests as a fun way to learn more about their ancestry and unearth family connections, some tests can also provide impactful medical information. Some direct-to-consumer (DTC) tests can tell you whether you have a higher risk of or are a carrier for certain conditions. The testing offered through DTC companies is much more limited than what your provider can order. However, if a risk is identified, this could alert you to potential health risks to discuss with your health care provider. It will be important for your health care provider to confirm the finding since the accuracy of DTC testing can vary. If a genetic risk is confirmed, your provider can make recommendations for preventive care, screening or treatment.
Before you purchase a test, you will want to understand what types of results will be returned to you and consider the risks and benefits of learning this information — for your health and well-being as well as the potential impact to different types of insurance.
DTC genetic tests are ordered by an individual with results returned directly to that individual. Initially, this information is private and is not placed or viewable in your medical record.
However, that could change. For instance, if your results raise concerns about a risk for a future medical condition, you may want to seek guidance from a health care provider. If you do, the information will most likely be reflected in a clinical note in the medical record. A copy of the report you brought in may also be scanned into the medical record by the provider. Your health care provider may recommend another test to confirm what the DTC test found before making changes to your medical care, and this would most certainly appear in your medical record.
When it comes to how this could affect your insurance, there are a couple of things to keep in mind:
- Your health insurance and employment are protected. Health insurance and employment are currently protected through a federal law called the Genetic Information Nondiscrimination Act (GINA), which prohibits health insurance companies from requesting, requiring or using genetic information in their determination of eligibility or premiums and prohibits employers from requesting, requiring or using genetic information to make decisions about hiring, firing, promotion, pay, privileges or terms.
While reassuring, some exceptions do apply. Those interested can find more information at GinaHelp.org or the National Human Genome Research Institute.
- Life, disability and long-term care insurances are a different story. No federal-level protection exists to prohibit the use of genetic information for these types of insurance, though some states do have some protections. You can learn more about your state laws at the Genome Statute and Legislation Database.
If you are purchasing or changing one of these policies, insurance companies can use your genetic information similar to how they use other types of medical information — such as lab tests, overall health status and existing diagnoses — to determine if, how and at what cost they will cover you.
Even if the actual genetic result is not in the medical record, it is legal for these companies to ask questions. Don’t lie in your answers — this could have repercussions down the road.
The reality is there have been very few documented cases of genetic discrimination. Still, the possibility exists, and this should be considered as people decide whether to have genetic testing. An option for those interested in genetic testing would be to attain the desired insurance plans prior to pursuing genetic testing.
If you’re not sure whether taking a direct-to-consumer test is right for you, you may want to consider talking with a genetic counselor first. Genetic counselors are well versed in helping patients navigate these types of decisions. If you have a specific health or family history concern it is best to speak with your provider or genetic counselor to determine what type of testing would best help you find the answers you are seeking. Individuals can find access to a genetic counselor through their local institution or the National Society of Genetic Counselors.