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Questions raised about genetic testing in children

For many parents who face a family history of devestating genetic diseases, the question of whether their child is at risk, and their chances of getting the disease, may not be far from mind. The rise in popularity of at-home genetic tests suggests some feel the answers to those questions may no longer be a secret.

But many experts say the anxiety that comes along with a predictive test and no definitive results does more harm than good. That’s why a new policy statement by the American Academy of Pediatrics and the American College of Medical Genetics aims to put the brakes on testing children to identify inherited diseases that can occur when they become adults. Physicians should discourage testing in children for adult onset genetic disease, especially if there is no treatment to give during childhood to prevent the disease, according to the policy statement released Thursday.

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“In that case, there’s nothing the person can do differently until they are an adult,” said Dr. Lainie Ross, the Carolyn and Matthew Bucksbaum professor of clinical ethics at the University of Chicago and lead author of the accompanying report published Thursday in the journal Genetics in Medicine.

The statement is the first time both organizations have teamed together.

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