HHS Newborn Screening Committee Update
Within the next few months, the US Department of Health and Human Services (HHS) is expected to release national guidelines detailing a minimum set of newborn screening tests recommended for inclusion in all state newborn screening programs.
A major impetus for the guidelines is the wide disparity in the number of conditions now included in state-mandated newborn screening programs. For example, Kansas, Kentucky and Arkansas test for just four or five conditions each, while Iowa tests for more than 40.
"We're concerned that there is not equity for parents across states, and we feel that we should move in that direction,” says Peter Van Dyck, director of the Maternal and Child Health Bureau within the HHS Health Resources and Services Administration (HRSA).
The guidelines will be based in large part on a report prepared for HHS by the American College of Medical Genetics (ACMG). Although the report is not yet final, the ACMG shared an early draft with the HHS Advisory Committee on Heritable Disorders & Genetic Diseases in Newborns & Children, which voted in September 2004 to "accept and recommend" the report’s conclusions.
ACMG Executive Director Michael Watson said that the ACMG considered two alternate recommendations for the core panel: "to argue that(government) mandated newborn screening is the only way or to say that . . . it should be the standard of care that all
babies be screened, basically putting responsibility on the pediatrician. "We opted for the first choice," he said.
Earlier this year, HHS funded seven regional newborn screening centers to share best practices among states and develop regional strategies to optimize newborn screening services.
In the meantime, the HHS genetics committee has met only twice. Future recommendations will likely deal with funding issues as well as consideration of a national newborn screening process.
CARES Executive Director Kelly Leight sits on the Newborn Screening and Follow-Up and Diagnosis workgroup for the ACMG, representing the interests of the CAH community.
Adapted and abridged from the Association for Public Health Laboratories web site: www.aphl.org
