This project will develop knowledge about health care provider and patient perceptions of breast cancer, to guide the clinical use of DNA-based tests to measure inherited susceptibility for this condition. Such testing will soon be possible, as a result of advances in knowledge about the genes that contribute to breast cancer. Public concern about breast cancer, as one of the leading causes of premature death in women, is likely to motivate interest in the use of genetic susceptibility testing, as a means to tailor preventive measures to individual risk. Yet genetic risk may be seen as uniquely predictive and immutable. Information about inherited susceptibility to breast cancer could stigmatize individuals with positive test results and alter concepts of personal responsibility for health. As a new and highly sophisticated technology, DNA-based genetic susceptibility testing may also have potential for over-use, thus representing a new threat to cost-effective clinical care. The study will address these issues with questionnaires and interviews to determine: (l) How women receiving routine health care and primary care (PC) providers think about breast cancer risk, and their receptiveness to the use of a test for inherited susceptibility to breast cancer; (2) How women react to receiving risk information about breast cancer based on their family history; (3) Whether PC providers differ from genetics professionals in their approach to counseling concerning genetic risk for breast cancer. In addition, a Policy Group, comprising study investigators and experts in genetics, ethics and health services delivery will be formed and will meet regularly during the course of the project, to review study data and to identify the major policy considerations applicable to the use of genetic susceptibility testing for breast cancer.
| Culver, Julie O; Bowen, Deborah J; Reynolds, Susan E et al. (2009) Breast cancer risk communication: assessment of primary care physicians by standardized patients. Genet Med 11:735-41 |
| Press, Nancy; Reynolds, Susan; Pinsky, Linda et al. (2005) 'That's like chopping off a finger because you're afraid it might get broken': disease and illness in women's views of prophylactic mastectomy. Soc Sci Med 61:1106-17 |
| Burke, W; Olsen, A H; Pinsky, L E et al. (2001) Misleading presentation of breast cancer in popular magazines. Eff Clin Pract 4:58-64 |
| Burke, W; Pinsky, L E; Press, N A (2001) Categorizing genetic tests to identify their ethical, legal, and social implications. Am J Med Genet 106:233-40 |
| Durfy, S J; Buchanan, T E; Burke, W (1998) Testing for inherited susceptibility to breast cancer: a survey of informed consent forms for BRCA1 and BRCA2 mutation testing. Am J Med Genet 75:82-7 |
