The 131st Annual Meeting (November 15-19, 2003) of APHA

Abstract #74536

Emily Gamble Gardiner, MPA¹, Janina Austin, MBA¹, Helene Toiv, MPA¹, Ann Tynan, MPH¹, and Kevin Milne, JD, LLM². (1) Health Care Group, U.S. General Accounting Office, 441 G St., NW, Washington, DC 20548, (202) 512-4469, gamblegardinere@gao.gov, (2) Office of General Council, U.S. General Accounting Office, 441 G Street, NW, Room 7U15, Washington, DC 20548

Each year newborn screening programs in all the states test 4 million newborns to identify those who may have genetic and metabolic disorders that could threaten their life or long-term health. Early detection, diagnosis, and treatment of these disorders may prevent a child’s death, serious illness, or disability. In this session, the U.S. General Accounting Office will discuss findings from our survey of newborn screening programs in all 50 states and the District of Columbia. The survey collected information on the laboratory and program administration/follow-up components of states’ newborn screening programs for genetic and metabolic disorders. We will discuss (1) the disorders tested for in each state, (2) how disorders are selected, (3) information communicated to parents and health care providers about newborn screening, (4) how states notify parents and providers of screening results and follow up on abnormal results, (5) state newborn screening programs’ expenditures and funding sources, and (6) efforts by the Department of Health and Human Services and states to monitor and evaluate the quality of state newborn screening programs.

Learning Objectives:

At the conclusion of the session, the participant will be able to:
• Identify which genetic and metabolic disorders are screened for in each state.
• Understand how states select disorders to include in their newborn screening programs, educate parents and health care providers about newborn screening, notify them of screening results, and follow up on abnormal results.
• Describe state newborn screening programs’ expenditures and funding sources.
• Describe efforts by the Department of Health and Human Services and states to monitor and evaluate the quality of state newborn screening programs.
• Discuss how state laws address consent and privacy issues related to newborn screening.

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.