Despite demand, parents urged not to use direct-to-consumer genetic tests on their kids

Last month, the US Food and Drug Administration convened a two-day advisory panel meeting to discuss the pros and cons of providing consumers with direct access to <A HREF=” https://www.nature.com/nm/journal/v16/n9/full/nm0910-953.html”>genetic tests such as those sold by 23andMe and Navigenics. As part of the agency’s <A HREF=” https://www.nature.com/nm/journal/v16/n7/full/nm0710-728b.html”>ongoing deliberations over how best to regulate the industry, experts discussed how the tests should be marketed, as well as standards for ensuring that the gene kits are accurate and reliable.

For the most part, the panel’s considerations centered around how personalized DNA information affects adults. Yet it might only be a matter of time before children become the target of advertising campaigns for these products, too — and according to new survey data, parents seem to look forward to that day.

A team led by Kenneth Tercyak, a pediatric oncologist at Georgetown University Medical Center in Washington, DC, surveyed more than 200 parents about whether they would have their children genetically tested for a panel of common, adult-onset conditions, such as cancer and type 2 diabetes. Reporting today in the journal Pediatrics, the researchers found that parents generally favor the genetic information, believing that DNA tests can lead to improved health maintenance and disease prevention during childhood and into later life.

“The findings of our study should remind clinicians and policy-makers to consider children when regulating genetic tests,” Tercyak said in a press release. “A child’s unexpected test results could trigger negative reactions among parents and children, and lead to conversations at the pediatrician’s office that providers aren’t prepared to have."

Despite parents’ best wishes, however, some lobby groups still maintain that the risks of such tests outweigh the benefits. “Children should not be tested for risk of adult-onset conditions, full stop,” Helen Wallace, executive director of the UK’s GeneWatch, told the BBC. “They should be allowed to decide for themselves, with medical advice, when they are grown up.”

But these tests are coming anyway, Tercyak’s team warns. So doctors need to be ready.

Roya Samuels, a pediatrician at Cohen Children’s Medical Center in Queens, New York, advises physicians to help parents better understand the limitations of genetic tests. “Although early testing of children might motivate parents to take healthier steps now to prevent these conditions from causing problems later in life,” she wrote in an email to MedPageToday, “the genetic tests have not been proven to prevent or reduce bad health outcomes.”

For contrasting views on the merits and dangers of having unfiltered access to personal DNA data, check out these two op-eds from today’s Los Angeles Times.

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