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Test the Children

Two big advisory groups have updated their stance on genetic testing and screening of children for the first time in more than a decade this week. The American College of Medical Genetics and Genomics and the American Academy of Pediatrics released a joint policy statement in the journal Pediatrics and a scientific paper backing up their recommendations in Genetics in Medicine.

The new advice hinges less on the potential harms of genetic information to the psyches of kids and their parents than the groups' earlier positions, and encourages testing that is in children's best interest.

For those looking to avoid slogging through the whole document, Scientific American has a "Cliff's Notes" version at its guest blog.

Among the specific advice the new statement puts forward is a distinction between predictive testing for diseases that affect kids while they are still kids, and testing for diseases that only affect people once they are adults.

The new guide gives the thumbs up to genetic tests for children who have no symptoms but who are at risk for childhood-onset diseases, recommending that ideally children give their consent to the testing as well.

According to Ricki Lewis, writing at Sciam, the new recommendations have also softened toward the possibility that testing for adult-onset diseases like Huntington's might be beneficial for some children, but they still tow the more traditional line — recommending that families defer genetic testing for late-onset conditions until adulthood.

The advice of the two groups also gives a sharp "no" to direct-to-consumer genetic testing of children, but says that newborn screening tests should be offered to every family.

Our sister publication GenomeWeb Daily News has more on these recommendations here.