Half a Million Babies Not Screened for Serious Genetic Disorders

Nearly 90 percent of babies born in the United States -- more than double the percentage in 2005 -- live in states that require screening for at least 21 life-threatening disorders, according to the March of Dimes Newborn Screening Report Card.

The American College of Medical Genetics (ACMG) recommends every U.S. newborn to be screened for 29 genetic or functional disorders. If diagnosed early, all of these devastating conditions can be successfully managed or treated.

Two years ago, 38 percent of infants were born in states requiring screening for at least 21 of these 29 core conditions. After four years of advocacy by March of Dimes chapters, partners and parents, that percentage has increased to 87.5, or about 3.6 million babies.

"While this expansion of newborn screening is good news for families, the lives of 500,000 newborns still hang in the balance," said March of Dimes President Dr. Jennifer L. Howse. "The United States lacks federal guidelines for newborn screening. Babies must be screened to receive treatment necessary to survive and lead healthy lives. The lack of federal guidelines makes it difficult for states to get support for needed legislation."

Presently, 13 states and the District of Columbia require screening for all 29 conditions.

"All babies across America should be screened for all of these 29 treatable conditions," said Dr. Howse.

This is the fifth year the March of Dimes has worked with the National Newborn Screening and Genetics Resource Center to analyze state-by-state newborn screening requirements.

The March of Dimes supports two pieces of bi-partisan legislation, the "Newborn Screening Saves Lives Act," and the "Screening For Health of Infants and Newborns (SHINE) Act of 2007," which lays the groundwork for national guidelines, and authorizes funding for education, improved follow-up care, and expanded programs.

A list of screening tests each state provides is available at http://marchofdimes.com/peristats, or at http://genes-r-us.uthscsa.edu/.

Parents can find a brochure about the recommended newborn screening tests at http://marchofdimes.com/nbs.

Those living in states with limited newborn screening can arrange privately for additional tests, often at additional expense.

The March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For more information, visit http://marchofdimes.com/ or http://nacersano.org/ for Spanish.

Source: March of Dimes

Web site:
http://www.marchofdimes.com/
http://nacersano.org/
http://genes-r-us.uthscsa.edu/