RICHMOND, VA (WWBT) - Home genetic test kits were one of the hottest holiday gifts last year. More people are mailing off their DNA, not just to trace their ancestry, but to trace their chances of developing certain diseases.
With a swab of your cheek or a vial of blood, you could discover your chances for developing diseases such as cancer, Alzheimer’s, or diabetes. Genetic testing is performed both through medical facilities and home testing services.
But our 12 On Your Side Investigation reveals not all genetic tests are created equal. We discovered what consumers should look for to make sure their DNA test results are accurate and protected.
Kristin Richardson had her DNA tested through her doctors. She says it revealed she has a 20 percent chance of developing heart disease, stroke or early onset Alzheimer’s.
“It’s called APOE4 and I got it from one of my parents,” said Richardson. “It doesn’t mean you’re going to get it, it just means you’re more pre-disposed to get it.”
Counseling from her doctors is helping her take some preventative steps, like getting more sleep and watching her weight.
“I’m trying to use this to stay on my health goals even more so,” Richardson said.
PartnerMD has teamed up with VCU Health System to offer accredited genetic testing and counseling to patients.
Explained Dr. Jim Mumper with PartnerMD, “They want to know do I have a genetic trait that I need to know about? And if so are there things I can do to lesson the risk?”
While more medical facilities like PartnerMD offer genetic testing, many consumers are also turning to home test kits called direct-to-consumer tests.
But a study by Ambry Genetics of 49 direct-to-consumer tests have some doctors concerned.
“It was retested in an accredited genetics laboratory, and there was up to a 40 percent false test result,” said Dr. Mumper.
Joshua Clayton had his DNA tested through a popular home test kit and, for $5 more, sent his results to a third party lab. He says that lab told him he had a gene mutation linked to Lynch Syndrome, which brings a higher risk for cancer.
“It was scary to think I might have something I have to act on for the rest of my life," Clayton said. "It prompts all these questions like, ‘Do I have a low-level cancer now that I don’t know about?’”
Clayton then had a clinical genetic test at the University of Texas Southwestern, which he says proved the first results were wrong.
Beyond possible errors, the Federal Trade Commission warns consumers to read a test’s fine print to see if results will be shared with any third parties and how data is secured.
The Genetic Information Nondiscrimination Act, or GINA, prohibits health insurance companies from using genetic information to determine a person’s health care coverage. But the U.S. National Library of Medicine points out GINA does not apply to disability insurance, long-term care insurance, or life insurance.
We asked the leading home test company, 23andMe, how the company has addressed these concerns. A company spokesperson sent us a statement saying the Ambry Genetics study does not apply to 23andMe’s data, and that 23andMe uses an “incredibly rigorous, FDA mandated accuracy review process.” The company website specifies that analysis is performed in labs certified by Clinical Laboratory Improvement Amendents (CLIA) and accredited by the College of American Pathologists (CAP).
The 23andMe website also states the company does not sell customer information to third parties without their explicit consent, and its written statement to us says data is secured in “walled-off segregated computing environments.”
Lastly, there are emotional and ethical considerations for test takers. Experts recommend anyone being tested meet with a genetic counselor to discuss how to deal with the results and whether to share them with relatives.
Said Richardson of her results, “I haven’t shared it with my parents, because I don’t want to scare them about their own health. I don’t want to make them feel guilty that one of them shared this gene with me.”
For best results, experts recommend choosing a genetic health test that uses an accredited or certified lab, seeing if your data will be shared with third parties, and talking with a genetic counselor about your results.