Tuesday, 19 April 2011

Parents, Kids and Genetic Testing For Adult-Onset Diseases

Parents, Kids and Genetic Testing For Adult-Onset Diseases

Direct-to-consumer genetic tests are controversial, with Congress last year scrutinizing their scientific accuracy and marketing practices. There’s also a philosophical debate raging about whether the public is ready for the type of information currently available about the risk of certain diseases.

But what about kids? A study published online in Pediatrics finds that some parents, at least, are willing to have their children tested to see their genetic risk of developing adult-onset diseases and conditions including diabetes, high cholesterol, heart disease and certain forms of cancer.

With a few exceptions, the information you can get from these tests isn’t particularly definitive. It might indicate you have an above average chance of developing heart disease, but that doesn’t mean you’ll get it. And if you’re deemed to be at below-average risk, that doesn’t guarantee you won’t.

The survey covered 219 parents who were already interested enough in the topic to have participated in a large study on attitudes about testing for themselves. And respondents were on average more willing than not — 4.3 on a scale of 1 (not at all likely) to 7 (very likely) — to say they’d be willing to have their kids tested for the diseases. The survey also found that parents who intended to get tested themselves were more willing to consider getting their kids tested, too. Study authors urge pediatricians to anticipate parents’ questions about this kind of testing.

There’s one camp that says young people deserve to have preserved “their right to have and not have that information,” which means pushing off a decision until “they’re at a stage to make that choice,” study lead author Kenneth Tercyak, associate professor of oncology and pediatrics at Georgetown University Medical Center’s Lombardi Comprehensive Cancer Center, tells the Health Blog. (To this point, testing for BRCA1 and BRCA2 gene mutations, which can indicate a significantly higher chance of developing breast and ovarian cancers, isn’t recommended for those under 18.)

But Tercyak notes that “parents make decisions on their children’s behalf all the time,” and that many are intrigued by the notion that genetic information might serve as a “teachable moment” to help kids adopt healthier eating or exercise habits in order to manage their risks.”It’s very difficult to help adults lose weight and exercise more, so the idea that we could begin to implement changes during childhood for true primary prevention is appealing,” he says.

Research is increasingly showing that adopting — or not adopting — healthy lifestyle habits as a kid or teen can affect the odds of developing heart disease as an adult.

Tercyak says, though, that it’s still an open question whether genetic information can provide a teachable moment. And we wonder: if a kid learns he’s at a lower-than-average risk of high cholesterol as an adult, would that encourage him to stay inside for another round of Halo rather than go outside and kick a soccer ball around?

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