The Federal Title V MCH program began providing national leadership and support to States to develop genetic services capability long before there was a legislative mandate for a Federal genetic services program. This included the development of community-based multidisciplinary child development clinics in the 1950s and State newborn screening programs for metabolic disorders in the early 1960s. By the mid 1960s, the MCH Program was also supporting biochemical and cytogenetic laboratories training programs and university affiliated programs to provide broad interdisciplinary training in the diagnosis and management of handicapped and mentally retarded individuals.
The 1972 Sickle Cell Anemia Control Act was the first Federal legislation concerned with genetic disorders. Although responsibility for implementing the Act was delegated to the National Institutes of Health (NIH), NIH transferred funds under this authority to the MCH Program to develop community-based sickle cell education, screening, and counseling services.
The National Genetic Disease Act (Title XI of the Public Health Service Act) was passed in 1976 but funds to implement programs under the Act were not appropriated until 1978. With the earmarked funds, the Federal MCH program began to build and improve genetic services at the State level by providing funding for statewide genetic services programs. It took 13 years, until 1990, for all 50 States, the District of Columbia, Puerto Rico, and the Virgin Islands to complete 4 years of Federal grant support for this activity. The Federal funding was provided to develop and improve such statewide programs, with the understanding that States would continue these programs when Federal support ended. Today, all States have taken over this responsibility, but the scope of services available varies from State to State.
From the late 1970s to the early 1980s, several regional genetics networks came into existence to examine needs, coordinate services, share resources, collect data, and conduct other activities. In 1983, the MCH genetic services program began to provide funding for these networks. Three years later, the Council of Regional Networks for Genetic Services (CORN) was established and funded to coordinate, at the national level, activities among the 10 federally funded regional genetics networks, examine the need for minimal standards of care in genetic services, and collect data. The MCH program has also actively supported and provided funding for the Alliance of Genetic Support Groups to promote consumer/provider partnership in the delivery of genetic services.
The goal of the MCH genetic service program is to improve the quality, availability, accessibility, and utilization of genetic services as an integral component of comprehensive maternal and child health services, particularly for the undeserved and at-risk populations. Each year, a major portion of the program budget is dedicated to support CORN, the Alliance, and the regional genetics networks.
From 1985 to 1991, the MCH program actively stimulated and provided support to establish statewide newborn sickle cell screening programs. Today, such programs exist in over 40 States. Since 1991, funding has been provided to improve comprehensive followup care of infants with sickle cell disease identified by newborn screening program.
The MCH genetic services program also funds many other important demonstration projects as special projects of regional and national significance (SPRANS). Some examples are projects that improve the effectiveness and efficiency of State newborn screening systems; provide comprehensive medical care, psychosocial support, and counseling for individuals and families affected by Cooley's anemia or thalassemia; enhance unitization of genetic and other MCH services by Southeast Asian refugees; overcome ethnocultural barriers and increase access to and utilization of genetic services for populations confronted by language and cultural barriers; demonstrate model peer support groups for young adults with genetic disorders; and initiate model programs for transition from pediatric to adult family and specialty care for persons with genetic disorders.
