Men’s Decision-Making About Predictive BRCA1/2 Testing: The Role of Family
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Men who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. Male carriers may be at increased risk of breast and prostate cancers. Relatively little is known about at-risk men’s decision-making about BRCA1/2 testing. This qualitative study explores the influences on male patients’ genetic test decisions. Twenty-nine in-depth interviews were undertaken with both carrier and noncarrier men and immediate family members (17 male patients, 8 female partners, and 4 adult children). These explored family members’ experiences of cancer and genetic testing, decision-making about testing, family support, communication of test results within the family, risk perception and risk management. Implicit influences on men’s testing decisions such as familial obligations are examined. The extent to which other family members—partners and adult children—were involved in testing decisions is also described. It is demonstrated that mothers of potential mutation carriers not only perceive themselves as having a right to be involved in making this decision, but also were perceived by their male partners as having a legitimate role to play in decision-making. There was evidence that (adult) children were excluded from the decision-making, and some expressed resentment about this. The implications of these findings for the practice of genetic counseling are discussed.
Key WordsBRCA1/2 testing men family decision-making
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- Beauchamp, T. L., & Childress, J. F. (1994). Principles of Biomedical Ethics, 4th ed. New York: Oxford University Press.Google Scholar
- Lodder, L., Frets, P. G., Trijsburg, R. W., Tibben, A., Meijers-Heijboer, E. J., Duivenvoorden, H. J., et al. (2001). Men at risk of being a mutation carrier for hereditary breast/ovarian cancer: An exploration of attitudes and psychological functioning during genetic testing. Eur J Hum Genet, 9, 492–500.CrossRefPubMedGoogle Scholar
- McAllister, M. (2004). On being used by research participants. In N. Hallowell, J. Lawton, & S. Gregory (Eds.), Reflections on Research: The Realities of Doing Research in the Social Sciences. Maidenhead, UK: Open University Press.Google Scholar
- Nuffield Council of Bioethics. (1993). Genetic Screening: Ethical Issues. London: Nuffield Trust.Google Scholar
- O’Neill, O. (2002). Autonomy and Trust in Bioethics. Cambridge, UK: Cambridge University Press.Google Scholar
- Petersen, A., & Bunton, R. (2002). The New Genetics and the Public’s Health. London: Routledge.Google Scholar
- Strauss, A., & Corbin, J. (1990). Basics of Qualitative Research. London: Sage.Google Scholar
- The Breast Cancer Linkage Consortium. (1999). Cancer risks in BRCA2 mutation carriers. J Natl Cancer Inst, 91, 1310–6.Google Scholar
- Wexler, N. (1995). Mapping Fate: A Memoir of Family, Risk and Genetic Research. New York: Random House.Google Scholar
- Whittemore, A. S., Gong, G., & Itnyre, J. (1998). Prevalence and contribution of BRCA1 mutations in breast and ovarian cancer: Results from three U.S. population-based case-control studies of ovarian cancer. Am J Hum Genet, 60, 496–504.Google Scholar