There's A Catch That Comes With Taking A 23AndMe Test

With all the holiday discounts, it may seem like now’s the time to buy an at-home DNA test. The genetic testing kits break down your family history, traits, wellness and health risks. All you have to do is send a sample of saliva away in the mail and ― voilà! ― a couple of months later, you’ll know yourself better than ever.

But while the kits may seem like the perfect stocking stuffer, some health experts say there are a few key details you should definitely consider before you do a direct-to-consumer (DTC) genetic kit. Some of those test results could wind up making an impact on other aspects of your life. Below are a few things experts want you to be aware of before you swab.

Interpreting results can be tricky — and can leave you with misinformation.

One of the biggest red flags with DTC genetic testing is the fact it comes down to an interaction between you and a computer. There is no one helping you understand your report, and, as a result, many people wind up playing a guessing game about their health.

“You are sending your spit, they’re extracting DNA, and you’re getting testing performed ― that test result comes back to you and you may or may not interpret it correctly,” said Dr. Gail Vance, a member of the College of American Pathologists and professor in the department of medical molecular genetics at Indiana University.

For example, say you opt for the BRCA test in your 23andMe kit to determine your risk for breast and ovarian cancer. The 23andMe test actually only looks at three specific BRCA gene mutations, which primarily appear in the Ashkenazi Jewish population, according to Vance. If you’re not Ashkenazi Jewish, the BRCA result that 23andMe may find might not necessarily pertain to you, she said.

There are also thousands of mutations that exist in the BRCA genes, so at-home kits like 23andMe that only test for a handful of those mutations hardly cover the full span. If your test comes back negative, you may falsely assume you have no risk for cancer when in reality, a full test hasn’t really been done. 

All of this is basically to say that you’re not exactly receiving a definitive answer just from the kit alone.

The same goes for other health conditions. Genetics is only one piece of the puzzle. If your at-home DNA kit suggests you might be at risk for something like diabetes, for example, that doesn’t mean it’s a definitive diagnosis, according to Vance. And on the flip side, a negative test result doesn’t mean that you are out of the woods. If you don’t have a predisposition for a health condition like diabetes or heart disease based on your DNA results ― but say you’re overweight or you smoke ― then you still have a risk.

Finally, 23andMe provides a small snapshot of your health, not the whole picture. According to Vance, it’s best to follow up with your health care provider, who can run additional tests in an accredited laboratory and confirm any conditions you may (or may not) be at risk for.

“If you have something that’s positive, you should probably have that interpreted in the context of your health and your family health by a medical practitioner,” Vance said. “If you’re negative, you should look at that negative result again in the context of your medical health, your family health, your environment and your lifestyle.”

Certain insurance premiums could increase after your results.

Let’s start with the good news: Thanks to the Genetic Information Nondiscrimination Act ― aka GINA ― employers and health insurance providers cannot discriminate against Americans based on genetic information. Your health insurance is in the clear.

Unfortunately, though, GINA does not protect members of the U.S. Military, Indian Health Service, Veterans Administration, federal employees and those who work for a company with fewer than 15 employees, Vance explained. Additionally, GINA does not apply to life insurance, disability or long-term care insurance in most states, meaning that these premiums could very well fluctuate based on your test results.

“Yes, life insurance carriers can adversely discriminate and rate for risks when it comes to previous genetic testing results,” said Jason P. Veirs, owner and president of InsuranceExperts.com, who specializes in life, disability, health and long-term care insurance.

That being said, most providers don’t specifically ask about genetic testing (yet) nor can they require you to get genetic testing done, Veirs said. However, if you have taken a genetic test and the insurance company asks for it, you technically need to disclose that information.

“The insurance carriers also rely on the applicant providing accurate health information, therefore, if you’ve had testing that showed a proclivity or susceptibility towards a certain cancer or disease ― even if not performed by a physician ― then it would most likely have to be disclosed on the application,” Veirs said.

Lastly, if you’ve gotten genetic testing and it’s in your medical records, it will pop up during the underwriting process, which can spike up your rates. Veirs recommended securing a policy prior to getting any testing done. Once your insurance is in place, the carrier cannot ding you for any positive genetic test results, he said.

Your results could lead to added anxiety.

There’s a chance you could find out some information, whether it’s related to your health or your family, that could lead to increased anxiety. Make sure you’re mentally prepared to get all the details before sending off your swab, said Ellen Matloff, founder and former director of the Cancer Genetic Counseling Program at Yale School of Medicine and CEO of My Gene Counsel.

“People learn all sorts of unexpected things from these tests that they think, ‘Oh, sure, I’d want to know this information’ and a lot of times they aren’t ready for it,” she said.

Matloff also stressed the importance of being aware that genetic tests can have a broader impact on your extended family. Understand the risks and know that a family surprise or two may pop up. And if you test positive for a certain health risk or mutation, keep in mind that might mean family members may also be at risk.

“DNA is a family affair and getting into this could impact people other than you,” Matloff said.

When it comes to these at-home genetic testing kits, you have options. Ask yourself why you’re doing the test and if you’re ready for any curveballs. You can decide not to unlock the family connection tool or bypass the health assessment.

And always, always read the privacy policy. When you spit into a tube and mail it away, you’re sharing some of your most personal information. Determine whether or not you’re comfortable trusting a third party with your DNA samples. You can always opt out of it or request to have your genetic information destroyed.

Ultimately, at-home genetic tests like 23andMe can be a fun and interesting tool, but it’s important to follow up with a health care professional who can help interpret and clarify your results. They can make sure you understand any questions the test may have brought up.