STATE-TO-STATE VARIATIONS IN NEWBORN SCREENING POLICIES

Background: Population-based newborn screening for genetic and metabol ic disorders is standard practice in all states in the United States. Policies governing newborn screening are determined at the state level ; however, and thus, a great degree of variability exists between stat es regarding many facets of such screening. Objective: To gather infor mation relating to the processes, content, and outcomes of policy maki ng affecting newborn screening programs across the United States. Meth ods: We surveyed the directors of newborn screening programs for each of the 50 states using a postal questionnaire. The questionnaire solic ited information about the specific tests incorporated in each state's panel of screening tests and information pertaining to the policymaki ng processes by which decisions are reached regarding this testing. Re sults: Substantial variation exists across states regarding both the p rocesses of policy formulation and the outcomes of decisions made abou t newborn screening. All states currently screen for phenylketonuria a nd congenital hypothyroidism. Extensive variation exists across states in testing for other disorders. The processes by which state policy m akers arrive at decisions in this area are extremely diverse. Almost t hree fourths of the states have standing expert advisory bodies who is sue recommendations regarding screening program modifications, but the authority granted to these panels varies substantially. Some regional cooperation in this area exists. Conclusions: Further development of regional cooperation could offer some states greater efficiency in bot h laboratory testing and screening policy formulation. From the standp oint of an individual state, Wisconsin's approach to policy developmen t in this area is described as a model worthy of consideration.