Challenges and opportunities in establishing and maintaining newborn screening systems

Newborn screening began in the early 1960s and during the four decades it has existed, has become a recognized vital public health prevention program. It has evolved conceptually from a laboratory test for a single disorder, phenylketonuria, to a comprehensive 6-part public health system of education, screening, follow-up, diagnosis, management, and evaluation. Newborn screening in different countries has been successful because of the efforts of a single individual or group of individuals interested in improving the health of children. Newborn screening has been shown to successfully detect serious disorders before symptoms appear and to significantly reduce the morbidity and mortality that might result if left undetected and untreated, yet there have been (and continue to be) obstacles to implementing newborn screening programs. The obstacles are the same for developed or developing programs and include: (1) adequate financing, (2) technology implementation, (3) program logistics, (4) cultural sensitivity, (5) education, and (6) political support. All newborn screening programs must exist within the limitations of their local environment in this regard. Each program confronts these barriers in its own way and various examples of overcoming barriers are discussed including linkages to immunization programs, regional planning, program advocacy, and legislation.