FACILITATING INFORMED DECISIONS ABOUT BRCA1 TESTING

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The breast cancer susceptibility gene (BRCA1) was recently identified. In the near future, it will be possible to test breast and/or ovarian cancer patients and their first degree relatives for the presence of BRCA1. Many questions must be answered before BRCA1 testing becomes standard clinical practice. What information do women need to make an informed decision about testing? How can this information best be provided? What is the psychological and psychosocial impact of BRCA1 testing on breast cancer patients and their first degree relatives? The proposed research seeks to answer these questions. In the Development Phase of our research program, focus groups will be held with breast cancer patients and their first degree relatives. Attitudes, beliefs, and information needs about BRCA1 testing will be assessed. Additional focus groups will be held with individuals who have undergone genetic testing for other disorders. The data obtained in the focus groups will be used in developing a Tailored Informed Consent information for women considering BRCA1 testing. In the Intervention Phase, a randomized trial will be conducted comparing the Tailored informed Consent information (TICI) with Usual Care Informed Consent information (UICI). The UICI materials will review all essential aspects of informed consent but will not be tailored for the individual woman. A total of 400 breast and/or ovarian cancer patients and their family members will be accrued. All subjects will have been determined to be at high risk of BRCA1 positivity based on family history, and they will be offered BRCA1 testing. it is hypothesized that the Tailored Informed Consent group will have fewer intrusive thoughts about breast cancer, improved knowledge about of BRCA1 testing, and a more accurate perception of their breast cancer risk (relatives only). Following BRCA1 testing, study participants will be re-assessed at one and six months to assess the psychosocial consequences of testing and changes in health behavior. We believe that this research will lead to improved decision-making concerning BRCA1 testing and a better understanding of the psychosocial impact of genetic testing for breast cancer.