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Assessing Genetic Risks: Implications for Health and Social Policy
in the report. The committee considered whether there will be enough adequately trained health professionals in the future to handle the potential volume, diversity, and complexity of genetic tests, and to perform specific functions in genetic services, such as laboratory testing, taking family history, diagnosis, education, counseling, technical support, and research.1 This chapter addresses the separate issues of specialized genetics education for specialists and genetics education for generalists (primary care practitioners), recognizing that both will be needed as more genetic tests become available. The following section focuses on current and future supplies of genetic specialists and their certification. The latter half of the chapter addresses, more broadly, the issues surrounding genetics education in medical school and general practice, and the potential role of other health professionals in providing genetics services. The chapter concludes with recommendations intended to help prepare the nation for changes likely to be brought about by widespread genetic testing. These recommendations include suggestions for research to better inform policy makers as they prepare for that future.
Many types of professionals provide specialized genetic services: physicians, Ph.D. clinical geneticists, genetic counselors, nurses, and social workers. Other individuals trained as research scientists are involved in genetics research. A large medical center that provides genetic services and conducts research is likely to employ individuals at all levels—master's, Ph.D., and M.D. Smaller private or community-based hospitals are likely to employ master's-level genetic counselors or nurses and physicians trained in genetics. Until recently, Ph.D. geneticists and genetic counselors were not able to see patients without the oversight of an M.D., but changes in the certification status of these individuals may change their roles in the clinical setting (see below). Although available data indicate that the numbers of individuals graduating from human genetics training programs are increasing, it is not clear that this increase is occurring at the rate necessary to ensure adequate and appropriate levels of support for genetic services in the future.
Furthermore, the geographic distribution of genetic specialists will be critical in ensuring access to individuals needing genetic services. Currently, genetics professionals tend to be clustered in the Northeast and on the West Coast, as well as in the Chicago area. A survey of genetic counselors and nurses working in genetics showed a heavy concentration of counselors in five states, with 43 percent of respondents located in California, Illinois, New Jersey, New York, and Pennsylvania (OTA, 1992b). This uneven distribution of scarce genetic practitioners is even more limiting given the specialized expertise of many genetic centers in a relatively small number of genetic disorders. As a result, families must often travel long distances to receive specialized genetic services for a particular genetic disorder.
Reimbursement policies regarding genetic testing also have a significant effect on personnel issues. Currently, genetic counselors cannot be reimbursed di-