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Cancer Control Research

Abstract

DESCRIPTION (provided by applicant): Demand for genetic susceptibility counseling for cancer has been steadily increasing and is expected to continue to increase as additional susceptibility genes are identified. Traditional, in-person genetic counseling has been shown to be effective at fostering informed decision making and minimizing adverse outcomes associated with genetic testing. However, the reach and accessibility of in-person genetic counseling is limited. There are large areas of the country which are not served by genetic counselors. This lack of access will worsen as the number of available genetic susceptibility tests for adult-onset diseases continues to grow. Physicians do not have the time or expertise required to provide genetic counseling. Thus, alternatives to the standard genetic counseling delivery model are needed. Such alternatives must expand the reach of genetic counseling without sacrificing efficacy. To date, there has been little research aimed at developing and evaluating alternative models of adult genetic service delivery. In the proposed equivalency trial, we will evaluate telephone-based genetic counseling. Such counseling is already commercially available, but has not been rigorously evaluated in a randomized trial. Thus, in the proposed randomized equivalency trial, we will compare telephone-based genetic counseling to standard, clinic-based genetic counseling among 1248 women with at least a 10 percent prior probability of carrying a BRCAI or BRCA2 mutation. In our previous research, we have provided genetic counseling and testing to over 2000 such women. Guided by the Ottawa Framework for Informed Decision Making and the central tenets of genetic counseling, we will compare these two groups on: 1) utilization of BRCAI/BRCA2 genetic testing and 2) psychosocial, quality of life and informed decision making outcomes. In addition, we will evaluate the applicability of the Ottawa Framework for explaining the beneficial effects of genetic counseling and we will identify individual patient variables, which moderate the effect of the two interventions.