The March of Dimes is dismayed by the inaccuracies and misleading tone of
The New York Times February 21, 2005 article on newborn screening. Newborn screening is a safe and accurate way to test babies for certain rare but deadly or disabling birth defects. Since the mid-1960s, newborn screening programs have been so successful that screening is now routine for millions of babies born each year in the United States and in much of the world.
Undue alarm is raised in the Times article about false positive screening test results. Medical screening programs must cast a wide enough net to identify all affected individuals, even at the cost of some initial false positives. But the family of any newborn who screens positive for a disorder, along with the pediatrician, would receive a notice to bring the baby in for further testing to confirm the diagnosis before any treatment would begin. The New York State Task Force on Life and the Law's Newborn Screening report in 2000 rebuffed claims regarding lethal effects from inappropriate treatments for PKU diagnosed through newborn screening. The Times should not have repeated claims that have never been substantiated.
Each state or region in the U.S. designs and operates its own newborn screening program, and, unfortunately, these programs vary widely in the number and type of conditions for which they screen. The real issue before us now is how to obtain equity for all babies by creating a uniform national standard of best practices for newborn screening and followup. The March of Dimes supports the recommendations made by the experts of the American College of Medical Genetics, and endorsed by the HHS Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. We urge the Secretary of Health and Human Services to accept these recommendations as a national standard for newborn screening for the states.
The March of Dimes urges state policy makers to ensure that their newborn screening programs include research, development, and validation of methods to detect and treat disorders, as well as prompt follow-up and counseling for affected families. All newborn screening programs should provide high quality screening tests with state-of-the-art technology, trained personnel, and resources for timely follow-up and program evaluation. The March of Dimes supports expansion of capacity and development of standards, policies, and procedures for newborn screening programs and quality assurance.
March of Dimes state chapters and their partners will continue to work closely with governors, state legislators, and health departments to improve state newborn screening programs. We urge the states to inform all parents prospectively about the potential benefits and availability of comprehensive newborn screening. We also support parents' rights to be fully informed about their baby's screening results, and we support the expansion of health care provider education about newborn screening.
