Parental consent needed for genetic screening

Most of the 4.3 million babies born in the United States each year are screened without parental consent for up to 50 genetic disorders that may cause such severe conditions as mental retardation. But at a pediatric grand rounds in February, Lainie Friedman Ross, M.D., Ph.D. ’96, the Carolyn and Matthew Bucksbaum Professor of Clinical Medical Ethics at the University of Chicago, argued for changing the recommendations governing parental consent.

“If we had parental consent for these tests it would show respect for parental autonomy in health care decisions for their children, which is required for all other health care, and it would also allow us to enroll the children in research protocols,” Ross said. “That is the only way we will learn the natural history of these very rare diseases, understand who needs to be treated and develop effective treatments for them.”

Ross also questioned the current policies of the American Academy of Pediatrics and the American College of Medical Genetics, which proscribe testing children for adult-onset conditions like breast cancer. Some parents want the information early for psychosocial reasons. While predictive testing should be discouraged, Ross maintained that parents, not physicians, should have the final say in testing children.