PROBLEM

Newborn screening (NBS) is a public health activity for early identification and follow-up of infants affected by certain genetic, metabolic, hormonal and/or functional conditions. Since the mid-1960s, the success of NBS programs has made screening routine for the millions of babies born each year in the United States. In 2002, about 3,300 newborns were found to have metabolic disorders and another 12,000 to 16,000 to have hearing impairment.[1][2][3]

MARCH OF DIMES POLICY:

The March of Dimes supports comprehensive NBS for every baby born in the U.S. and its territories for conditions that meet the following criteria: there is a documented benefit to the affected infant from early detection and there is a reliable screening test that enables early detection from newborn blood spots or other means. March of Dimes supportsscreening all newborns for 29 conditions recommended in a 2004 report by the AmericanCollege of Medical Genetics (ACMG) to the Federal Health Services Resources Administration (HRSA). The March of Dimes supports parents’ rights to be promptly and thoroughly informed about their babies’ screening results, and supports expansion of health care provider education programs. NBS programs should include high quality screening tests with the state-of-the-art technology, trained personnel, and resources for timely follow-up and program evaluation.

NEWBORN SCREENING IN MINNESOTA:

The Public Health Laboratory in MN screens all newborn babies for a wide spectrum of congenital and inherited diseases. Hospitals collect blood from the newborns and submit the dried blood spot specimens to the Public Health laboratory. Each year the MN Dept. of Health screens more than 72,000newborns in Minnesota and saves the lives or greatly improves the outcomes for approximately 75 to 90 children "confirmed positive" with a disorder each year. These early medical interventions prevent severe disabilities and death.[4] As required under Minnesota State Law (144.125), the state currently screens for 54 disorders including all 29 metabolic conditions and hearing screening as recommended by the AmericanCollege of Medical Genetics and endorsed by the March of Dimes.

RECOMMENDATION:

The March of Dimes recommends supporting the Newborn Screening bill as introduced.

For more information contact:

Marianne Keuhn, State Director of Program Services

Minnesota Chapter, March of Dimes

5233 Edina Industrial Blvd., Edina, MN 55439

952-835-3033 ext. 304

[1] National Newborn Screening and GeneticsResourceCenter, published in General Accounting Office, Newborn Screening: Characteristics of State Programs. Washington, DC: US General Accounting Office; 2003. Publication GAO-03-449.

[2] Wang SS, Fernhoff PM, Hannon WH, Khoury MJ. Medium chain acyl-CoA dehydrogenase deficiency: Human genome epidemiology review,. Genetics in Medicine 1999; 1:332-339

[3] hearing.org/resources.html

[4]