Genetic testing for cancer risk will be an important component of cancer prevention and control because it will provide the opportunity to identify high-risk individuals within high-risk families and int eh population-at- large. Genetic testing for breast cancer risk is now available on a research basis for individuals from very high risk families. It is not clear when and how such family-based testing will move into clinical settings. commercial BRCA1 testing may be available early in 1996. In the near future, individual-based genetic testing may be feasible; even women not from these very-high-risk families are expressing a great deal of interest in BRAC1 testing. Policies and guidelines for genetic testing in clinical settings must be developed and should include individual-based testing as well as family-based testing. To develop policies and guidelines for genetic testing within a health care organization, one must consider consumer factors in addition to scientific evidence of benefit and risk. Little is known about he general health care consumer's interest in, perception of, or educational preparation for genetic testing for cancer susceptibility. In this pilot study, we will develop a structured instrument to assess knowledge of breast cancer issues identified as important by health care consumers or providers in making decisions about genetic testing for breast cancer susceptibility. We will conduct focus groups among health care consumers and providers, develop and pilot test a structured interview, and interview 100 women (one-half of African heritage and one-half of European heritage). As a result of this work will be able to develop larger population-based studies of consumers' views of genetic testing for cancer susceptibility, and to expand the scope to include other minority populations and methods for meeting consumers' decision-making needs. This proposal is unusual and important because it will include health care consumers and providers from primary care to oncology specialists as sources for identifying issues important in decision-making for genetic cancer susceptibility testing; general health care consumers as the target population (not just women known to be at increased breast cancer risk); several likely scenarios for genetic testing for breast cancer susceptibility (not just BRCA1 testing in very-high-risk families); population in the U.S. women of African heritage.
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