Genetic testing is a holiday present that curious teens and tweens have been asking for in recent years.
Companies such as 23andMe and AncestryDNA, among others, are promoting holiday direct-to-consumer DNA testing, which can offer information ranging from the most likely geographic origins of your ancestors to your potential risk of cancer as an adult.
Though it seems like simple 21st-century fun with technology, there are a few issues that local experts warn about — for tweens, teens and adults.
All kids have to do is spit in a tube (or swab the inside of a cheek) and mail it off. But it’s important to note that genetic test results don’t apply only to the person tested. They can affect the subject’s relatives, too — perhaps giving them more information than they wanted.
One relative’s test results can open up entire families to suddenly knowing about the possibility of a dire health outcome — without tools to prevent it happening — experts say. This could occur with knowing a relation’s reported risk of Alzheimer’s disease, for instance. Even if you don’t want to know your results, a teen’s test for fun could give you information you weren’t seeking.
“Let's say for example, you do one of the at-home tests that tells you that you have an increased risk to develop Alzheimer's disease, and there's no treatment for Alzheimer's disease,” said Heidi Thiese, a genetic counselor based in Seattle. “So a lot of people choose to not know that information because there wouldn't be a medical intervention, and if you have close relatives, a parent or a sibling or a child who learns that information, there's a very high likelihood that you also share that risk.”
“Sometimes you might discover something about a future health risk in a young person that's very far off for them and may not have immediate implications for them, but it's directly relevant to their parents,” said Malia Fullerton, a professor of bioethics and humanities at the University of Washington School of Medicine.
When something potentially serious is discovered on a direct-to-consumer genetic test, it’s also outside the framework of formal medical genetic testing, in which a doctor and genetic counselor would be closely involved and the tests would be far more specific.
There’s also a question of whether a minor can legally — or ethically — give informed consent for genetic testing.
“One of the things that’s a foundational piece of genetic counseling is walking a person through an informed consent process, allowing them to make an individual decision,” said Thiese. “And I think if a child is gifted the genetic tests, that that decision has been made for them.”
“It's not actually sequencing your DNA,” points out Thiese. “It's looking for common areas in your DNA that may be altered in a way that may or may not increase your risk. So it's not a black-and-white test result. The test will give you an odds ratio of the chance that you may at all have a common disease.”
Occasionally kids’ genetic tests can unearth surprise ancestry information — about unknown siblings or even the information that your parents are not really your parents. And finding out that one’s ethnicity may be different from what one identifies with could be disruptive for some people as well, said Fullerton.
Everyone should recognize that genetic testing is not just “a bit of fun,” says Fullerton — and that it’s unclear what companies are choosing to do (or will do in the future) with the genetic data that is being acquired.
“The long game here is not to make money selling kits, although the kits are essential to get the base level data,” Patrick Chung, a 23andMe board member, told Fast Company in 2013. “Once you have the data, [the company] does actually become the Google of personalized health care."
Fullerton urges wariness. “Our genetic information is very detailed, very personal to us,” she said. “We don't quite know exactly what these companies do with our DNA, although it's pretty clear the business model is broader than just providing fun information back to people.”
Related: More on the privacy issues surrounding DNA tests from the consumer website Comparitech.