were initially established with federal funding under the Genetic Diseases Act of 1976.5 Most (77 percent) still receive some support for genetics services from the state through federal Maternal and Child Health block grant funds (Public Law 997-35), to which funding from the Genetic Diseases Act was transferred in 1981. However, MCH block grants generally represented less than 25 percent of total state funding. Nearly half the programs reported a decrease in block grant funding when inflation is taken into account (CORN, 1991). Many state genetics services programs historically paid for newborn screening, but the majority now charge birth hospitals, attending physicians, or parents for newborn screening.

A few state programs have more extensive authorization and funding that permits them to provide or pay for genetic testing or genetic counseling. State genetics services programs also vary in their policies toward the use of genetic testing information for abortion counseling (Clayton, 1993). Several states specifically attempt to limit use of available state genetics services when the goal is selective abortion of affected fetuses. Minnesota and Missouri provide extensive genetic testing services, but almost no funding for abortion services; Tennessee's extensive prenatal diagnosis program is limited to conditions leading to treatment in the mother or the baby, but its legislation states that "use of this program to abort unborn children is against the public policy of the State of Tennessee" (Tennessee Code Annotated, 1991, § 68-5-501-505).

Thus, the committee sees (I) wide variation in policy, practice, and funding within state programs; (2) differences in reimbursement policies and practices among third-party payers concerning reimbursement for genetic testing and counseling services; and (3) regulatory, administrative, and funding barriers to coverage and reimbursement of appropriate genetics services.

Federal Support for Genetics Services Programs

The federal government still maintains a small amount of direct project grant funding for Special Projects of Regional and National Significance (SPRANS) through the Genetic Services Branch, Maternal and Child Health Services Bureau, Health Resources and Services Administration, in the Department of Health and Human Services. These special project grants are available on a competitive basis for genetics projects of special regional or national significance, but are not intended to replace the ongoing state funding that was transferred to block grants in 1981. These grants have funded special projects around the nation as well as many activities of the Council of Regional Networks for Genetic Services (CORN), including its genetics services data collection, newborn screening, and laboratory quality assurance activities. Special project funds have also supported activities of the Alliance of Genetic Support Groups. Federal funding has reached slightly more than $9 million for fiscal year 1993 for SPRANS grants, essentially the same level of funding received for 1992.

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