ERIC Number: ED475963
Record Type: Non-Journal
Publication Date: 2003-Mar
Reference Count: N/A
Newborn Screening: Characteristics of State Programs.
Toiv, Helene F.; Austin, Janina; Gardiner, Emily Gamble; Tynan, Ann; Hill, Ariel; Milne, Kevin; Moon, Cindy; Lawes, Susan
Each year, state newborn screening programs test 4 million newborns for disorders that require early detection and treatment to prevent serious illness or death. The U.S. General Accounting Office (GAO) was asked to provide Congress with information on variations among state newborn screening programs. Based on surveys of such programs in all 50 states and the District of Columbia, the GAO found the following: (1) while the number of genetic and metabolic disorders included in state screening programs ranges from 4 to 36, most states screen for 8 or fewer disorders; (2) in deciding which disorders to include, states generally consider similar criteria, such as whether the disorder is treatable, and costs of screening for additional disorders; (3) most programs have similar practices for administering and funding their programs, and almost all provide education for parents and providers, but fewer than one-fourth inform parents of their option to obtain tests for additional disorders not included in the state's program; (4) state programs are primarily funded through fees collected from health care providers; (5) all newborn screening laboratories participate in a quality assurance program offered by Department of Health and Human Services' Centers for Disease Control and Prevention; (6) all states require newborn screening, and state statutes usually do not require parental consent, but 33 states allow exemptions from screening for religious reasons, and 13 additional states allow exemptions for any reason; and (7) newborn screening statutes and regulations in over half the states contain confidentiality provisions, but these provisions are often subject to exceptions. (Seven appendices include the scope and methodology of the GAO study, information on disorders most commonly included in state newborn screening programs, a chart of newborn screening program fees and expenditures per infant screened, and comments from the Department of Health and Human Services.) (HTH)
U.S. General Accounting Office, 441 G Street, NW, Room LM, Washington, DC 20548 (first copy, free; additional copies $2 each). Tel: 202-512-6000; Fax: 202-512-6061; Web site: http://www.gao.gov/cgi-bin/ordtab.pl. For full text: http://www.gao.gov/cgi-bin/getrpt?GAO-03-449.
Publication Type: Reports - Research
Education Level: N/A
Authoring Institution: General Accounting Office, Washington, DC.