At Home DNA Tests
Test Results Can Be Interesting, But They’re Not Always Complete or Accurate. It’s Important To Talk To Your Doc.
Everyone has that hard-to-buy-for person on their holiday gift list who delights in the unusual, unique and fun,” read the ad posted on the internet last December. “That’s the kind of person who would really enjoy a DNA test kit as a gift.”
The ad went on to say that the kit provides a “gift of family history” and “health, beauty and wellness,” with a “wealth of important and actionable information.”
Yes, it’s fun to learn about your ancestors and where they came from. And while genetic health information can be very compelling, the kind you obtain from an at-home DNA test should be taken with a grain of salt.
Dr. Lauren Nye, a medical oncologist with the University of Kansas Health System who specializes in breast cancer and breast cancer prevention, says more patients are using at-home DNA test kits.
Nye likes the fact that genetic information has become more accessible to consumers. “Over the last few decades, it’s become feasible to extract DNA from something as simple as saliva, which makes testing very easy,” she says. “The DNA can be analyzed for mutations that can alter one’s risk for a disease. While it’s frightening to find out somebody has a mutation that increases the risk of cancer, it’s also powerful information.”
Powerful indeed. Based on the information a patient obtains from an at-home DNA test, she might decide that she faces little or no risk of cancer. Or, on the flip side, the test results might freak her out and make her think she needs to have her breasts and ovaries removed ASAP.
With so much at stake, at-home DNA tests are drawing a lot of scrutiny in the science and cancer advocacy communities. Science News reported on June 9, 2018, that the FDA granted approval for the 23andMe DNA testing company to tell customers if they have one of three genetic variants in the BRCA1 and BRCA2 (tumor suppressor) genes.
However, health care providers and breast cancer advocacy groups agree that “Offering information on only three variants when there are thousands in the two genes that increase risk for breast and ovarian cancers — as well as melanoma, prostate and pancreatic cancers — is troublesome,” according to Science News.
Nye says she has patients who come in panicked because an at-home test kit reported a genetic mutation that can cause cancer. After subsequent testing under the supervision of a physician, such patients frequently learn that the at-home DNA test result was a false positive. “But they’ve spent months of their life worrying,” Nye says.
But Nye’s biggest concern with at-home DNA test kits is that patients may be falsely reassured that they don’t face an increased risk of cancer. Besides the fact that at-home tests may report on only three genetic mutations, she notes that “your genetic makeup is only a portion of your risk that contributes to the development of breast cancer. There are many other risk factors that should be reviewed that would warrant additional screening and prevention measures.”
Nye concludes that at-home DNA test kits are simply not a good way to pursue information about your health risks.
“Using them for ancestry information is fine, but I recommend treading cautiously,” Nye says. “Genetic information is not just a lab test. It reveals the most unmodifiable information about the most intricate details of your body and how your body works. Quality and accuracy are crucial. If someone is interested in their cancer genetics, that should be done through the guidance of their physician or a certified genetic counselor.”
In addition, Nye cautions that genetic testing “requires a full understanding of what you are testing and what the results could be, as well as the implications of those results. There are implications for obtaining life and disability insurance and implications for other family members who could be informed that they have a mutation they did not want to know about. There is a lot of counseling that should be provided with genetic testing that most patients are not pursuing when they do these home test kits.”
In a Dec. 12, 2017, release, the Federal Trade Commission said consumers should consider privacy before choosing a company to provide them with an at-home DNA test kit.
“The data can be very enlightening personally, but a major concern for consumers should be who else could have access to information about your heritage and your health,” wrote Lesley Fair, senior attorney for the FTC’s Bureau of Consumer Protection. “Scrutinize each company’s website for details about what they do with your personal data.”
Nye says consumers need to understand the “limitations of direct-to-consumer testing, as well as the risks for themselves and their family members. And I cannot stress enough that individuals should talk to their physician before pursuing any genetic testing.