DISSEMINATION OF A BRCAL PREDISPOSITION TESTING PROGRAM

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DESCRIPTION: (From the applicant's abstract) The cloning of BRCA1 is expected to permit rapid and widespread availability of testing for a marker of breast and ovarian cancer susceptibility, perhaps before either the public or clinical communities are optimally prepared to use the information for greatest benefit. We propose a demonstration project in which we will evaluate a predisposition testing program modeled closely on the Huntington Disease paradigm for members of families previously identified in which cancer susceptibility has been linked to BRCA1 with posterior probability >90%. Although we anticipate the cloning of BRCA1 before or during the project, we will restrict participants to members of linked families because of the limitations of available risk information which has been derived from linked families only. In this project, we will develop, implement and evaluate a program in which we will train and supervise genetic counselors and nurses to administer pretest education and disclosure counseling for BRCA1 susceptibility to members of linked families in their local communities. We will observe the psychosocial effects of genetic testing for risk of breast and ovarian cancers in members of these BRCA1-linked families. We will describe the impact of participation in a predisposition testing program with regard to quality of life and cancer risk management health behaviors. We will also provide an educational intervention to the health care providers of female relatives regarding medical management and genetic privacy implications of heritable cancer risks, and will assess the impact of the intervention on provider knowledge and recommendations for risk management.