Tests for genes associated with familial breast and ovarian cancer (BRCA1 and BRCA2) have recently become available for clinical use, and could potentially be used by a large proportion of the general population. However, there is controversy about BRCA1/2 testing because of uncertainty about the predictive value of the tests, lack of data on efficacy of treatments or preventive measures for breast and ovarian cancer, concerns about the psychosocial impacts of testing, and a lack of knowledge about genetic testing among patients and health care providers. It is generally assumed that greater patient understanding of testing, through counseling and informed consent, will lead to a minimization of potential for inappropriate test use or poor medical or emotional outcomes as a result of testing. However, no studies to date have directly addressed whether patient understanding or extensive counseling services have any relationship with patient behavior, or whether other factors such as patient concerns about confidentiality, or practitioner attitudes towards testing or medical management options, are also associated. The proposed project is designed to examine factors associated with the uptake of BRCA1/2 genetic testing and patients' medical management choices after learning their test results. In contrast to previous research on patients entered in genetic testing research protocols or of hypothetical testing choices, the proposed project will study patients' actual testing and medical management decisions in clinical practice and will examine the role of practitioner attitudes in those decisions. The investigators will collect data through interviews with patients who are offered BRCA1/2 testing, and through questionnaires to their practitioners. The main goals of the proposed project are: 1) To determine the characteristics of health care practitioners who are interested in or request the BRCA1/2 test, and to test the hypothesis that practitioner specialty, attitudes toward testing, and use of genetic counseling facilities are associated, and that these variables change over time. 2) To test the hypothesis that patient uptake (decisions to be tested or refusal to be tested) of BRAC1/2 testing is associated with patient demographics, patient knowledge and concerns about testing, actual and perceived risk factors, physician characteristics, and the extent of the informed consent process. 3) To examine the role of practitioner characteristics in patient medical management decisions after receiving BRCA1 testing.
| Sankar, Pamela; Wolpe, Paul Root; Jones, Nora L et al. (2006) How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States. Community Genet 9:78-86 |
| Cho, M K; Sankar, P; Wolpe, P R et al. (1999) Commercialization of BRCA1/2 testing: practitioner awareness and use of a new genetic test. Am J Med Genet 83:157-63 |
