Analytical resources for assessment of clinical genetics services in public health: current status and future prospects.

CONTEXT Genetics services are not well integrated into the public health programs of most states, nor has there been effective use of clinical and program databases in the design, evaluation, and monitoring of public health genetics services at the state level. OBJECTIVE To evaluate the availability and current use of population-based clinical genetics databases, including birth defects surveillance programs, in state-level public health genetics programs. DESIGN Mail survey to state genetics coordinators in 50 states and 3 territories during 1996 with an update in 1997. RESULTS Thirty states had birth defects surveillance programs; data from these resources were used in public health genetics program planning and management in only 15 states. Thirty states or territories had clinical genetics services databases. Most states had newborn screening program databases; few linked these records to vital statistics for programmatic purposes. Only 24 states had individual record databases for the Children with Special Health Care Needs program; 8 states had databases for maternal serum alpha-fetoprotein screening, and 7 had statewide cytogenetics registries. CONCLUSION Population-based databases concerning aspects of public health genetics are largely unavailable at the state level. Where these databases exist, they are poorly integrated into state public health genetics program activities. More attention should be paid to the development and use of clinical data programs for the assessment, monitoring, and assurance of genetics issues with relevance to population health.