Funding for genetic services is complex, both here and elsewhere in the United States. Currently there is no national standard for funding and each state has its own mix of funding mechanisms. Furthermore, even within one state different genetics activities may be funded independently, and between states the same activity may be funded entirely differently. Funding sources include newborn screening fees, general-purpose revenue, pass through money from federal sources, University funds, fee for service collection, various private and public grants and contracts.

Past Funding in Wisconsin

Initially clinical services were 'bootlegged' onto research funding. Monies specifically for the provision of genetics services were not received until 1976.

From 1976 to 1981 a statewide grant from the Developmental Disabilities Council of Wisconsin helped establish what was then termed the Genetic Contact Program. "Genetic Contacts" were individuals in each county of the state who were trained to recognize and refer individuals and families who were in need of clinical genetic services. Early prenatal diagnostic services also developed through money obtained in this grant.

The National Genetic Disease Act (Title XI of the Public Health Service Act) made federal funds available for genetic services for the first time. Grants were obtained for 1979 through 1982 for the development of a genetic services program in Wisconsin.

With the transformation of federal funding into a Block Grant program, Title V monies became competitively available. A portion of public sector genetics services has been funded in this way (and subsequently directly from the Department of Health and Family Services) for Statewide Genetic Services.

In addition, awards have previously been obtained from many private funding agencies for one aspect or another of genetics care. Medical schools in the State provide salary funding (including currently for 5 physician geneticists).

Current Funding in Wisconsin

Funding of public sector genetics currently includes a major grant for the Statewide Genetic Service Program (centered in Madison with subcontracts for LaCrosse, EauClaire and Milwaukee) through the Department of Health and Family Services. In addition, Biochemical Genetics services, as well as some supplementary general genetics activities, are funded through the Congenital Disorder Program that is supported by fees from newborn screening. Physician salaries are provided by the University of Wisconsin-Madison (State 101 funded) and the Medical College of Wisconsin/Children's Hospital of Wisconsin.

In addition to these major sources of funding, maintaining a comprehensive program has required cobbling together a heterogeneous mix of funding. For example, over the past 2 years the Clinical Genetics Center at the University of Wisconsin has utilized 23 different sources including other units of the University, private foundations, contracts with private hospitals, biotechnology companies, various state agencies, federal agencies etc. Virtually all programs are dependent on 'soft' money for their continued existence.

Funding Mechanisms in Neighboring States

Nationwide, state-specific information on funding for genetic services is not available. A state-by-state survey was recently completed under the direction of Hawaii's state genetics coordinator. However, state profiles are not yet available. Once completed, this survey may be of considerable benefit to the Advisory Council for Genetic Services.

Since state-specific information is not yet accessible, project staff carried out an informal survey to assess how genetic services are being funded in Wisconsin's neighboring states.