Hold off on getting a genetic test for your kid, NPR says. A position statement from the American Society of Human Genetics discusses the ethical and other issues that arise when testing children and adolescents, as GenomeWeb has reported.
In the American Journal of Human Genetics, the ASHG Workgroup on Pediatric Genetic and Genomic Testing says genetic testing of children should be limited to single-gene or targeted gene panels. The group also says that testing for adult-onset conditions should be avoided and that secondary findings should only be disclosed based on informed consent and when there is "clear clinical utility."
These new guidelines are an updated version of ones originally developed in 1995 by ASHG and the American College of Medical Genetics and Genomics.
"Genetic testing has changed drastically since 1995," NPR notes. "It's now possible not only to check for hundreds mutations that cause disease, but to scan and catalogue all of a child's DNA for a few thousand dollars."
But the guidelines suggest staying away from that, if possible, NPR adds. It's become easier to uncover genetic variants, it notes, but it can be difficult to know just what the variants mean. And, it says, that is why ASHG suggests that testing of kids should focus on a single gene or a handful of genes linked to their symptoms. Genome-scale testing could be pursued if such targeted testing comes up blank.
Healthy kids, ASHG says, shouldn't undergo whole-genome testing, and the society suggests avoiding direct-to-consumer genetic testing for kids until companies can show their tests are reliable and accurate.