Experts: Athome DNA tests bring fun, but risks as well

With the holidays nearly upon us, some people might be turning to athome DNA tests, such as 23andMe and AncestryDNA, as a fun and useful gift.

After all, these tests can teach people about their ethnic background, show how they might be genetically linked to others, and even provide information on their risks for disease and chronic health conditions.

And, in many ways, directtoconsumer DNA tests are perfectly fine, said Miriam DiMaio, an assistant professor of medical science at Quinnipiac University’s Frank H. Netter M.D. School of Medicine.

“It’s fun to learn about where you might be from,” she said.

The excitement about gaining insight into one’s genetic makeup might be why the tests have been so popular. Earlier this year, MIT Technology Review released a report showing that, by the start of 2019, more than 26 million people had added their DNA to the four leading ancestry and health databases.

But DiMaio and others said these kits can carry serious risks. They can provide information that people might not want to know, such as whether they have a different parent from their siblings, or that they’re at risk for an illness they can do nothing to prevent.

They can also provide information that’s not entirely accurate, experts said, which can lead to people seeking unnecessary treatment, or to them avoiding screening for illnesses that they incorrectly believe they’re at not risk for.

None of this means the tests should be avoided, but they should be approached with caution, said Danielle Kupperman, a certified genetic counselor with Danbury Hospital.

“People are now finding out more information about their health (through these tests), which is a good thing,” she said. “But I think what some people don’t realize is that it’s not always the complete picture.”

How they work

In general, athome DNA tests ask consumers to collect a specimen — usually saliva — and send it in to the company for testing and analysis. After a few weeks (Ancestry says six to eight weeks and 23andMe says three to five weeks), results are available to view.

These kits work in different ways, depending on what the consumer is looking to learn. One of Ancestry.com’s services, AncestryDNA, claims to provide information “about your geographic origins across 1,000 regions and identifies potential relatives through DNA matching to others who have taken the AncestryDNA test.”

Some tests, such as 23andMe, also examine a person’s genome to determine whether they are prone

to such traits as freckles, flat feet or motion sickness, and even claim to deduce whether they’re at risk for such illnesses as diabetes, macular degeneration or Alzheimer’s disease.

To date, 23andMe products are the only athome DNA tests that have undergone evaluation by the Food and Drug Administration for “accuracy, reliability, and consumer comprehension.” However, it’s worth noting that the FDA doesn’t review DNA tests that are used solely to help people explore their genetic ancestry.

Pros and Cons

Both DiMaio and Kupperman said there are perks to the genetic tests. For one thing, as DiMaio mentioned, it’s interesting and entertaining to learn about one’s background, or to see the wide range of traits that might be related through one’s DNA.

And, on the health side of things, the tests can make people more conscious about their personal wellness and susceptibility to illness.

“The argument in favor of these direct

toconsumer genetic tests is that they promote awareness,” DiMaio said. Plus, she added, if someone finds out their genetics put them at high risk for some illnesses, such as diabetes or heart disease, they can modify their behavior.

But there are definite drawbacks as well, the experts said. For one thing, tests can vary in their accuracy. The FDA states that the tests “have varying levels of evidence that support their claims. Some directtoconsumer tests have a lot of scientific and clinical data to support the information they are providing, while other tests do not have as much supporting data.”

DiMaio said, to her knowledge, some of the ancestry tests have improved in their accuracy as more people have submitted their DNA information, providing a larger pool of data to draw from. But she and Kupperman both said that the tests don’t always provide a full genetic picture.

For instance, Kupperman said, she knows some programs only test for some mutations in the BRCA1 and BRCA2 gene, which have been linked to breast, ovarian and other cancers. Thus, she said, even if the test results don’t show a mutation in the genes, the person could still carry them and be at risk for cancer.

Another risk of the tests is that the information they provide is potentially upsetting. DiMaio pointed out cases where people who had never been told they were adopted took athome DNA tests and found out they shared no DNA with their parents.

“That can be very distressing,” she said.

Kupperman agreed that the tests can unearth information a consumer might not be ready to handle. “What if you find out you’re at increased risk for Alzheimer’s disease, and there’s nothing you can do about it?” she said.

Neither Kupperman nor DiMaio said these concerns are reasons to completely eschew genetic tests for oneself or others. They just need to be approached with caution.

Kupperman said if people have the option, they should consult a professional genetic counselor to discuss a possible followup appointment to verify results of any athome tests.

One of the drawbacks of athome tests, Kupperman said, is that, once people get their results, they’re more or less on their own.

“There’s not a lot of guidance,” she said. “There’s no health care advocate to walk you through the results.”