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Men’s Decision-Making About Predictive BRCA1/2 Testing: The Role of Family

  • Original Research
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Journal of Genetic Counseling

Abstract

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.

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References

  • Armstrong, K., Calzone, K., Stopfer, J., Fitzgerald, G., Coyne, J., & Weber, B. (2000). Factors associated with clinical BRCA1/2 testing. Cancer Epidemiol Biomarkers Prev, 9, 1251–1254.

    CAS  PubMed  Google Scholar 

  • Beauchamp, T. L., & Childress, J. F. (1994). Principles of Biomedical Ethics, 4th ed. New York: Oxford University Press.

    Google Scholar 

  • Bodd, T. L., Reichelt, J., Heimdal, K., & Moller, P. (2003). Uptake of BRCA1 testing in adult sisters and daughters of known mutation carriers in Norway. J Genet Couns, 12, 405–417.

    Article  PubMed  Google Scholar 

  • Brandt, R., Hartmann, E., Ali, Z., Tucci, R., & Gilman, P. (2002). Motivations and concerns of women considering genetic testing for breast cancer: A comparison between affected and at-risk probands. Genet Testing, 6, 203–205.

    Article  Google Scholar 

  • Claes, E., Evers-Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. (2003). Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet, 116A, 11–19.

    Article  Google Scholar 

  • Culler, D. D., Silberg, J., Vanner-Nicely, L., Ware, J. L., Jackson-Cook, C., & Bodurtha, J. (2002). Factors influencing men’s interest in gene testing for prostate cancer susceptibility. J Genet Couns, 11, 383–398.

    Article  Google Scholar 

  • D’Agincourt-Canning, L. (2001). Experiences of genetic risk: Disclosure and the gendering of responsibility. Bioethics, 15, 231.

    Article  CAS  PubMed  Google Scholar 

  • Daly, P. A., Nolan, C., Green, A., Ormiston, W., Cody, N., McDevitt, T., et al. (2003). Predictive testing for BRCA1 and 2 mutations: A male contribution. Ann Oncol, 14, 549–553.

    Article  CAS  PubMed  Google Scholar 

  • Easton, D., Steele, L., Fields, P., et al. (1997). Cancer risks in two large breast cancer families linked to BRCA2 on chromosome 13 q12-13. Am J Hum Genet, 61, 120–128.

    CAS  PubMed  Google Scholar 

  • Easton, D. F., Ford, D., Bishop, D. T., & The Breast Cancer Linkage Consortium. (1995). Breast and ovarian cancer incidence in BRCA1 mutation carriers. Am J Hum Genet, 56, 265–271.

    CAS  PubMed  Google Scholar 

  • Fanos, J. H., & Johnson, J. P. (1995). Barriers to carrier testing for adult cystic fibrosis sibs: The importance of not knowing. Am J Med Genet, 59, 85–91.

    CAS  PubMed  Google Scholar 

  • Ford, D., Easton, D. F., & Peto, J. (1995). Estimates of gene frequency of BRCA1 and its contribution to breast and ovarian cancer incidence Am J Hum Genet, 57, 1457–1462.

    CAS  PubMed  Google Scholar 

  • Foster, C., Evans, D. G. R., Eeles, R., Eccles, D., Ashley, S., Brooks, L., et al. (2002). Predictive testing for BRCA1/2: Attributes, risk perception and management in a multi-centre clinical cohort. Br J Cancer, 86, 1209–1216.

    Article  CAS  PubMed  Google Scholar 

  • Goelen, G., Rigo, A., Bonduelle, M., & De Greve, J. (1999). Moral concerns of different types of patients in clinical BRCA1/2 gene mutation testing. J Clin Oncol, 17, 1595.

    CAS  PubMed  Google Scholar 

  • Haites, N. (2003). The ethical management of genetic testing. Eur J Cancer, 39, 1339–1340.

    Article  CAS  PubMed  Google Scholar 

  • Hallowell, N. (1998). “You don’t want to lose your ovaries because you think ‘I might become a man’.”: Women’s perceptions of prophylactic surgery as a cancer risk management option. Psychooncology, 7, 263–275.

    Article  CAS  PubMed  Google Scholar 

  • Hallowell, N. (1999). Doing the right thing: Genetic risk and responsibility. Sociol Health Illn, 21, 597–621.

    Article  Google Scholar 

  • Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., Murday, V., & Watson, M. (2002). Genetic testing for women previously diagnosed with breast/ovarian cancer: Examining the impact of BRCA1 and BRCA2 mutation searching. Genet Testing, 6, 79–87.

    Article  CAS  Google Scholar 

  • Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., Murday, V., & Watson, M. (2003). Balancing autonomy and responsibility: The ethics of generating and disclosing genetic information. J Med Ethics, 29, 74–79.

    Article  CAS  PubMed  Google Scholar 

  • Juengst, E. T. (1999). Genetic testing and the moral dynamics of family life. Public Understand Sci, 8, 193–205.

    Article  Google Scholar 

  • Julian-Reynier, C., Sobol, H., Sevilla, C., Nogues, C., Bourret, P., & French Cancer Genetic Network. (2000). Uptake of hereditary breast/ovarian cancer genetic testing in a French national sample of BRCA1 families. The French Cancer Genetic Network. Psychooncology, 9, 504–510.

    CAS  PubMed  Google Scholar 

  • Liede, A., Metcalfe, K., Hanna, D., Hoodfar, E., Snyder, C., Durham, C., et al. (2000). Evaluation of the needs of male carriers of mutations in BRCA1 or BRCA2 who have undergone genetic counseling. Am J Hum Genet, 67, 1494–1504.

    Article  CAS  PubMed  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.

    Article  CAS  PubMed  Google 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 

  • McAllister, M. F., Evans, D. G., Ormiston, W., & Daly, P. (1998). Men in breast cancer families: A preliminary qualitative study of awareness and experience. J Med Genet, 35, 739–744.

    CAS  PubMed  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 

  • Van Riper, M., & McKinnon, W. C. (2004). Genetic testing for breast and ovarian cancer susceptibility: A family experience. J Midwifery Womens Health, 49, 210–219.

    Article  PubMed  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 

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Hallowell, N., Ardern-Jones, A., Eeles, R. et al. Men’s Decision-Making About Predictive BRCA1/2 Testing: The Role of Family. J Genet Counsel 14, 207–217 (2005). https://doi.org/10.1007/s10897-005-0384-3

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