March of Dimes Calls for Public Release of Newborn Screening Report

WASHINGTON, JAN. 13, 2005 -- The U.S. Health Resources and Services Administration (HRSA) should release to the public the report to HRSA on newborn screening from the American College of Medical Genetics (ACMG), the March of Dimes said today.

The March of Dimes comments came at a quarterly meeting today of the HHS Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children.

"It's been four months now since this Committee reviewed the ACMG report to HRSA containing a recommended uniform panel of tests for newborn screening," said Dr. Jennifer L. Howse, president of the March of Dimes and a member of the Committee.  "At its last meeting in September, the Committee agreed that this report should be posted on the HRSA Web site for public comment.  What's the reason for the delay?

"Every day, about 11,000 babies are born in the United States, which means that there have been more than 1 million births since this Committee met last," Dr. Howse said.  "Every day that action on this report is delayed, babies fail to receive tests that could save their lives, or prevent them from suffering mental retardation or a serious physical disability.  We've waited long enough.  Now is the time for action to move this report forward to the Secretary for review."

The March of Dimes supports comprehensive newborn screening for all babies in this country, regardless of their place of birth.  March of Dimes state chapters and their partners work closely with governors, state legislators, and health departments to improve state newborn screening programs. 

Dr. Howse said the March of Dimes strongly commends the ACMG report to HRSA for advancing the field of newborn screening by defining a uniform panel of newborn screening tests, and by providing a policy framework for the states.  "We support the recommendations in this report and we urge the Secretary of Health and Human Services to accept them as a national standard for newborn screening," Dr. Howse said.

Based on the findings of this report, the March of Dimes urges every state to screen every baby for at least the 29 disorders listed in the ACMG report to HRSA.   The March of Dimes also urges states to provide test results for an additional 25 "reportable" conditions named in the report for which there are reliable tests but not yet documented treatments.  In addition, the March of Dimes urges states to inform all parents prospectively about the potential benefits and availability of comprehensive newborn screening.