Newborn screening questions, concerns arise
An influential federal advisory group is recommending all states expand newborn screening to include 29 rare medical conditions.
The recommendation is stirring controversy because of a delicate balance that clinicians are trying to strike between treating infants with well known disorders and the potential of inflicting emotional harm on families in disclosing disorders too new to have a solid treatment plan.
Tennessee is one of 16 states currently testing newborns for all 29 disorders.
John Phillips, M.D., director of the Division of Pediatric Genetics at VUMC, understands the concerns and has been watching the national debate closely.
“I guess the concerns have to be weighed against the significant number of children whose lives will be profoundly changed,” Phillips said. “Newborn screening is like having the 'check engine' light come on in your car,” Phillips said.
“You know there's a problem with a certain system, but you don't know exactly what the problem is until you do further testing.”
The March of Dimes officially supports the recommendations made by the experts of the American College of Medical Genetics (ACMG), and endorsed by the U.S. Health and Human Services Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children.