Pediatricians take stand against genetic testing of healthy children

The Canadian Paediatric Society is advising parents against pursuing genetic testing of healthy children. Its new guidelines state that children should be tested only to provide medical care during childhood. Otherwise, it is better to wait until children are old enough to make their own decision.

“The ethics of genetic testing in adulthood necessitate respect for autonomy,” says clinical geneticist Laura Arbour, the lead author. “We have to give children the same opportunity, the same respect — we have an ethical obligation.”

Arbour, who practises at the Children's and Women's Health Centre of British Columbia, says genetic testing can be appropriate for medical monitoring or newborn screening for conditions that might arise during childhood. However, it should be left to the children to decide when and if they want to be tested for adult-onset diseases such as breast cancer.

Arbour says many parents are unaware of the ethical issues surrounding genetic testing of healthy children, “but once they understand, it's rarely a problem.” She says it's also important for primary care physicians to be aware of the issues. The new guidelines are available at www.cps.ca. — Barbara Sibbald, CMAJ