Family Matters

Genetic Testing for Kids: Is It a Good Idea?

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With the advent of new genetic tests, it’s increasingly easy to gauge whether you’re predisposed to developing certain conditions — diabetes, say, or breast cancer. For adults, that knowledge can be simultaneously overwhelming and empowering. For children, the ramifications of such predictions are especially controversial, which is why professional groups — the American Academy of Pediatrics (AAP), in particular — have come out against genetic testing of children for adult-onset diseases.

Yet a new study published today in the AAP-affiliated journal Pediatrics finds that parents who were offered the option of genetic testing for themselves said they would also like to test their children. The 219 parents surveyed indicated they believe that the risks of testing their children for eight adult-onset conditions — colon, skin and lung cancer; heart disease, high blood pressure, high cholesterol, Type 2 diabetes and osteoporosis — outweigh the benefits.

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It wouldn’t be the first time people ignored doctors’ advice. The study accordingly points up the need for pediatricians to be prepared to handle parents’ questions about testing. Genetic tests are increasingly available on drugstore shelves or online, and they’re being marketed directly to people as a proactive way to take charge of their health. Someone who learns she’s prone to diabetes, for example, may feel compelled to cut back on sweets while someone predisposed to skin cancer may slather on sunblock.

“The argument is we should be telling parents and telling children to engage in all these healthy habits regardless of whether they have this genetic susceptibility or not,” says Colleen McBride, senior author of the study and chief of the social and behavioral research branch at the National Human Genome Research Institute (NHGRI).

Indeed, prevailing wisdom already exhorts parents to limit their children’s sugar intake and apply sunscreen regularly. Particularly for conditions that manifest themselves only in adulthood, is there a reason to test children? As the AAP stated in a summary of the journal article, it advises against testing kids for adult-onset conditions “when this information has not been shown to reduce morbidity or mortality through interventions initiated in childhood.”

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But parents apparently aren’t buying that line of reasoning. Yet if they’re hoping for a clean bill of health for their children, they probably won’t get one: genetic tests predict the likelihood of developing many common conditions, and most people would find themselves at greater risk for at least some of them.

“We told parents in the study that there are no known health benefits to these tests because we were trying to almost discourage these tests,” says McBride.

The study is part of a larger look at the public’s attitudes toward genetic testing by the NHGRI, a division of the National Institutes of Health. Although no kids were actually tested as part of the study, researchers are concerned that less-than-perfect test results in the real world could spark negative emotions among parents and children.

Researchers found that those parents keenest on testing themselves were more interested in testing their children too. Parents reported they thought test results could help them prevent disease and maintain a healthier lifestyle for their children.

Mothers were more inclined than fathers to want to test their children, and so were those parents who predicted they would react positively to finding out their child was at low risk. But in actuality, the 15 gene variants associated with the eight diseases in the study are so common that, on average, any child will have a gene variant for nine of the 15, says McBride.

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“The more they anticipated feeling good, the more they wanted to test,” says McBride. “But the reality is those parents are going to get bad news. Their kids are going to be at risk for something. So how are they going to react to that?”

Parents could experience extreme anxiety about their child’s well-being; on the other hand, they might take positive action and ensure their child eats well and exercises regularly — something pediatricians recommend regardless of test results. “We have to prime doctors to engage parents about how they will feel if they find out their child has some variants,” says McBride. “Is that going to wig them out or not?”

McBride doesn’t necessarily agree with the AAP’s position against testing children, but neither does that mean she’s a proponent. “If we’re going to try to have a big public-health impact, we should start with kids, so it’s a really logical place for this genetic testing notion to go,” she says. “But parents may be overestimating what they will get out of testing. I don’t think the concern that tests will be harmful is evidence-based. But if you had a couple hundred dollars, they may not be the best thing to do for your kid.”