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The Impact of Social Roles on the Experience of Men in BRCA1/2 Families: Implications for Counseling

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Journal of Genetic Counseling

Abstract

Recent advances in genetics have identified several genes associated with inherited susceptibility to breast and ovarian cancer and have led to the commercial availability of mutation analyses. Although the majority of cancers associated with BRCA1/2 mutations are seen in women, men with BRCA1/2 mutations are at increased risk for male breast cancer, prostate cancer, pancreatic cancer and melanoma. Limited data available on the response of men in BRCA1/2 families suggest that the majority do not pursue genetic counseling, thus they may forgo the opportunity to improve health practices and to pass on valuable cancer risk information to offspring. The patterns of relationships of men within the family and society can pose challenges to their recognition of genetic health threats and the need for preventive interventions. Genetic counselors are in a position to inform at-risk males of their genetic risk, and to help them explore their personal health options.

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References

  • Beare, H., & Priddy, N. (1999). The cancer guide for men. London NW1: Sheldon Press.

    Google Scholar 

  • Beery, T. A., & Williams, J. K. (2007). Risk reduction and health promotion behaviors following genetic testing for adult-onset disorders. Genetic Testing, 11(2), 111–123. doi:10.1089/gte.2006.0527.

    Article  PubMed  Google Scholar 

  • Bowen, D. J., Bourcier, E., Press, N., Lewis, F. M., & Burke, W. (2004). Effects of individual and family functioning on interest in genetic testing. Community Genetics, 7(1), 25–32. doi:10.1159/000080301.

    Article  PubMed  Google Scholar 

  • Brooks, G. R. (2001). Masculinity and men’s mental health. Journal of American College Health, 49(6), 285–297.

    PubMed  CAS  Google Scholar 

  • Brose, M. S., Rebbeck, T. R., Calzone, K. A., Stopfer, J. E., Nathanson, K. L., & Weber, B. L. (2002). Cancer risk estimates for BRCA1 mutation carriers identified in a risk evaluation program. Journal of the National Cancer Institute, 94(18), 1365–1372.

    PubMed  CAS  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. American Journal of Medical Genetics. Part A, 116(1), 11–19.

    Google Scholar 

  • Connell, R. W., & Messerschmidt, J. W. (2005). Hegemonic masculinity: rethinking the concept. Gender and Society, 19(6), 829–859. doi:10.1177/0891243205278639.

    Article  Google Scholar 

  • Courtenay, W. H. (2000). Constructions of masculinity and their influence on men’s well-being: a theory of gender and health. Social Science & Medicine, 50(10), 1385–1401. doi:10.1016/S0277-9536(99)00390-1.

    Article  CAS  Google Scholar 

  • Creighton, S., Almqvist, E. W., MacGregor, D., Fernandez, B., Hogg, H., Beis, J., et al. (2003). Predictive, pre-natal and diagnostic genetic testing for Huntington’s disease: the experience in Canada from 1987 to 2000. Clinical Genetics, 63(6), 462–475. doi:10.1034/j.1399-0004.2003.00093.x.

    Article  PubMed  CAS  Google Scholar 

  • d’Agincourt-Canning, L. (2001). Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics, 15(3), 231–247.

    Article  PubMed  CAS  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. Annals of Oncology, 14(4), 549–553.

    Article  PubMed  CAS  Google Scholar 

  • Davies, J., McCrae, B. P., Frank, J., Dochnahl, A., Pickering, T., Harrison, B., et al. (2000). Identifying male college students’ perceived health needs, barriers to seeking help, and recommendations to help men adopt healthier lifestyles. Journal of American College Health, 48(6), 259–267.

    PubMed  CAS  Google Scholar 

  • DeMarco, T. A., & McKinnon, W. C. (2006). Life after BRCA1/2 testing: family communication and support issues. Breast Diseases, 27, 127–136.

    Google Scholar 

  • Dube, C. E., & Fuller, B. K. (2003). A qualitative study of communication skills for male cancer screening discussions. Journal of Cancer Education, 18(4), 182–187.

    Article  PubMed  Google Scholar 

  • Dudok De Wit, A. C., Tibben, A., Frets, P. G., NMeijers-Heijboer, E. J., Devilee, P., & Niermeijer, M. F. (1996). Males at-risk for the BRCA1-gene, the psychological impact. Psycho-oncology, 5, 251–257.

    Article  Google Scholar 

  • Edwards, S. M., Kote-Jarai, Z., Meitz, J., Hamoudi, R., Hope, Q., Osin, P., et al. (2003). Two percent of men with early-onset prostate cancer harbor germline mutations in the BRCA2 gene. American Journal of Human Genetics, 72(1), 1–12.

    Article  PubMed  CAS  Google Scholar 

  • Finlay, E., Stopfer, J. E., Burlingame, E., Evans, K. G., Nathanson, K. L., Weber, B. L., et al. (2008). Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genetic Testing, 12(1), 81–91.

    Article  PubMed  Google Scholar 

  • Foster, C., Evans, D. G., 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. British Journal of Cancer, 86(8), 1209–1216.

    Article  PubMed  CAS  Google Scholar 

  • Friedman, L. S., Gayther, S. A., Kurosaki, T., Gordon, D., Noble, B., Casey, G., et al. (1997). Mutation analysis of BRCA1 and BRCA2 in a male breast cancer population. American Journal of Human Genetics, 60(2), 313–319.

    PubMed  CAS  Google Scholar 

  • Gayther, S. A., Mangion, J., Russell, P., Seal, S., Barfoot, R., Ponder, B. A., et al. (1997). Variation of risks of breast and ovarian cancer associated with different germline mutations of the BRCA2 gene. Nature Genetics, 15(1), 103–105.

    Article  PubMed  CAS  Google Scholar 

  • Glanz, K., Grove, J., Lerman, C., Gotay, C., & Le Marchand, L. (1999). Correlates of intentions to obtain genetic counseling and colorectal cancer gene testing among at-risk relatives from three ethnic groups. Cancer Epidemiology, Biomarkers & Prevention, 8(4 Pt 2), 329–336.

    CAS  Google Scholar 

  • Gough, B. (2006). Try to be healthy, but don’t forgo your masculinity: deconstructing men’s health discourse in the media. Social Science & Medicine, 63(9), 2476–2488.

    Article  Google Scholar 

  • Gray, R. E., Fitch, M., Phillips, C., Labrecque, M., & Fergus, K. (2000). Managing the impact of illness: the experiences of men with prostate cancer and their spouses. Journal of Health Psychology, 5(4), 531–548.

    Google Scholar 

  • Green, J., Richards, M., Murton, F., Statham, H., & Hallowell, N. (1997). Family communication and genetic counseling: the case of hereditary breast and ovarian cancer. Journal of Genetic Counseling, 6(1), 45–60.

    Article  Google Scholar 

  • Hadley, D. W., Jenkins, J., Dimond, E., Nakahara, K., Grogan, L., Liewehr, D. J., et al. (2003). Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer. Archives of Internal Medicine, 163(5), 573–582.

    Article  PubMed  Google Scholar 

  • Hagoel, L., Dishon, S., Almog, R., Silman, Z., Bisland-Becktell, S., & Rennert, G. (2000). Proband family uptake of familial-genetic counselling. Psycho-oncology, 9(6), 522–527.

    Article  PubMed  CAS  Google Scholar 

  • Hall, J. M., Lee, M. K., Newman, B., Morrow, J. E., Anderson, L. A., Huey, B., et al. (1990). Linkage of early-onset familial breast cancer to chromosome 17q21. Science, 250(4988), 1684–1689.

    Article  PubMed  CAS  Google Scholar 

  • Hallowell, N., Arden-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2006). Guilt, blame and responsibility: men’s understanding of their role in the transmission of BRCA1/2 mutations within their family. Sociology of Health and Illness, 28(7), 969–988.

    PubMed  Google Scholar 

  • Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2005a). Men’s decision-making about predictive BRCA1/2 testing: the role of family. Journal of Genetic Counseling, 14(3), 207–217.

    Article  PubMed  CAS  Google Scholar 

  • Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2005b). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clinical Genetics, 67(6), 492–502.

    Article  PubMed  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. Journal of Medical Ethics, 29(2), 74–79 discussion 80–73.

    Article  PubMed  CAS  Google Scholar 

  • Hamilton, R. J., Bowers, B. J., & Williams, J. K. (2005). Disclosing genetic test results to family members. Journal of Nursing Scholarship, 37(1), 18–24.

    Article  PubMed  Google Scholar 

  • Harris, M., Winship, I., & Spriggs, M. (2005). Controversies and ethical issues in cancer-genetics clinics. Lancet Oncology, 6(5), 301–310.

    Article  PubMed  Google Scholar 

  • Hong, L. (2000). Toward a transformed approach to prevention: breaking the link between masculinity and violence. Journal of American College Health, 48(6), 269–279.

    PubMed  CAS  Google Scholar 

  • Horsburgh, S., Matthew, A., Bristow, R., & Trachtenberg, J. (2005). Male BRCA1 and BRCA2 mutation carriers: a pilot study investigating medical characteristics of patients participating in a prostate cancer prevention clinic. Prostate, 65(2), 124–129.

    Article  PubMed  Google Scholar 

  • Hughes, C., Lerman, C., Schwartz, M., Peshkin, B. N., Wenzel, L., Narod, S., et al. (2002). All in the family: evaluation of the process and content of sisters’ communication about BRCA1 and BRCA2 genetic test results. American Journal of Medical Genetics, 107(2), 143–150.

    Article  PubMed  Google Scholar 

  • Hyde, J. S. (2005). The gender similarities hypothesis. American Psychologist, 60(6), 581–592.

    Article  PubMed  Google Scholar 

  • Julian-Reynier, C., Eisinger, F., Chabal, F., Lasset, C., Nogues, C., Stoppa-Lyonnet, D., et al. (2000). Disclosure to the family of breast/ovarian cancer genetic test results: patient’s willingness and associated factors. American Journal of Medical Genetics, 94(1), 13–18.

    Article  PubMed  CAS  Google Scholar 

  • King, M. C., Rowell, S., & Love, S. M. (1993). Inherited breast and ovarian cancer. What are the risks? What are the choices? JAMA, 269(15), 1975–1980.

    Article  PubMed  CAS  Google Scholar 

  • Klitzman, R., Thorne, D., Williamson, J., Chung, W., & Marder, K. (2007). Disclosures of Huntington disease risk within families: patterns of decision-making and implications. American Journal of Medical Genetics A, 143(16), 1835–1849.

    Article  Google Scholar 

  • Lerman, C., Hughes, C., Trock, B. J., Myers, R. E., Main, D., Bonney, A., et al. (1999). Genetic testing in families with hereditary nonpolyposis colon cancer. JAMA, 281(17), 1618–1622.

    Article  PubMed  CAS  Google Scholar 

  • Liede, A., Karlan, B. Y., & Narod, S. A. (2004). Cancer risks for male carriers of germline mutations in BRCA1 or BRCA2: a review of the literature. Journal of Clinical Oncology, 22(4), 735–742.

    Article  PubMed  CAS  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. American Journal of Human Genetics, 67(6), 1494–1504.

    Article  PubMed  CAS  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. European Journal of Human Genetics, 9(7), 492–500.

    Article  PubMed  CAS  Google Scholar 

  • Maat-Kievit, A., Vegter-van der Vlis, M., Zoeteweij, M., Losekoot, M., van Haeringen, A., & Roos, R. (2000). Paradox of a better test for Huntington’s disease. Journal of Neurology, Neurosurgery and Psychiatry, 69(5), 579–583.

    Article  CAS  Google Scholar 

  • Marteau, T. M., Dundas, R., & Axworthy, D. (1997). Long-term cognitive and emotional impact of genetic testing for carriers of cystic fibrosis: the effects of test result and gender. Health Psychology, 16(1), 51–62.

    Article  PubMed  CAS  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. Journal of Medical Genetics, 35(9), 739–744.

    Article  PubMed  CAS  Google Scholar 

  • Meiser, B., Collins, V., Warren, R., Gaff, C., St John, D. J., Young, M. A., et al. (2004). Psychological impact of genetic testing for hereditary non-polyposis colorectal cancer. Clinical Genetics, 66(6), 502–511.

    Article  PubMed  CAS  Google Scholar 

  • Nicholas, D. R. (2000). Men, masculinity, and cancer: risk-factor behaviors, early detection, and psychosocial adaptation. Journal of American College Health, 49(1), 27–33.

    PubMed  CAS  Google Scholar 

  • Ottini, L., Masala, G., D’Amico, C., Mancini, B., Saieva, C., Aceto, G., et al. (2003). BRCA1 and BRCA2 mutation status and tumor characteristics in male breast cancer: a population-based study in Italy. Cancer Research, 63(2), 342–347.

    PubMed  CAS  Google Scholar 

  • Patenaude, A. F., Dorval, M., DiGianni, L. S., Schneider, K. A., Chittenden, A., & Garber, J. E. (2006). Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. Journal of Clinical Oncology, 24(4), 700–706.

    Article  PubMed  Google Scholar 

  • Peterson, E. A., Milliron, K. J., Lewis, K. E., Goold, S. D., & Merajver, S. D. (2002). Health insurance and discrimination concerns and BRCA1/2 testing in a clinic population. Cancer Epidemiology, Biomarkers & Prevention, 11(1), 79–87.

    Google Scholar 

  • Peterson, S. K., Watts, B. G., Koehly, L. M., Vernon, S. W., Baile, W. F., Kohlmann, W. K., et al. (2003). How families communicate about HNPCC genetic testing: findings from a qualitative study. American Journal of Medical Genetics Part C Seminars in medical genetics, 119(1), 78–86.

    Google Scholar 

  • Pfeffer, N. L., Veach, P. M., & LeRoy, B. S. (2003). An investigation of genetic counselors’ discussion of genetic discrimination with cancer risk patients. Journal of Genetic Counseling, 12(5), 419–438.

    Article  PubMed  Google Scholar 

  • Roter, D., & Hall, J. (1992). Doctors talking with patients/patients talking with doctors: improving communication in medical visits. CT: Greenwood Publishing Group.

    Google Scholar 

  • Schofield, T., Connell, R. W., Walker, L., Wood, J. F., & Butland, D. L. (2000). Understanding men’s health and illness: a gender-relations approach to policy, research, and practice. Journal of American College Health, 48(6), 247–256.

    Article  PubMed  CAS  Google Scholar 

  • Struewing, J. P., Hartge, P., Wacholder, S., Baker, S. M., Berlin, M., McAdams, M., et al. (1997). The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. New England Journal of Medicine, 336(20), 1401–1408.

    Article  PubMed  CAS  Google Scholar 

  • Taylor, S. (2005). Gender differences in attitudes among those at risk for Huntington’s disease. Genetic Testing, 9(2), 152–157.

    Article  PubMed  Google Scholar 

  • Thompson, D., & Easton, D. (2001). Variation in cancer risks, by mutation position, in BRCA2 mutation carriers. American Journal of Human Genetics, 68(2), 410–419.

    Article  PubMed  CAS  Google Scholar 

  • Thompson, D., & Easton, D. F. (2002). Cancer Incidence in BRCA1 mutation carriers. Journal of the National Cancer Institute, 94(18), 1358–1365.

    PubMed  CAS  Google Scholar 

  • van Oostrom, I., Meijers-Heijboer, H., Duivenvoorden, H. J., Brocker-Vriends, A. H., van Asperen, C. J., Sijmons, R. H., et al. (2007). Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: a prospective study. Clinical Genetics, 71(1), 35–42.

    Article  PubMed  Google Scholar 

  • Wagner Costalas, J., Itzen, M., Malick, J., Babb, J. S., Bove, B., Godwin, A. K., et al. (2003). Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program’s experience. American Journal of Medical Genetics Part C Seminars in medical genetics, 119(1), 11–18.

    Google Scholar 

  • Welkenhuysen, M., Evers-Kiebooms, G., Decruyenaere, M., Claes, E., & Denayer, L. (2001). A community based study on intentions regarding predictive testing for hereditary breast cancer. Journal of Medical Genetics, 38(8), 540–547.

    Article  PubMed  CAS  Google Scholar 

  • White, R. (2002). Social and political aspects of men’s health. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 6(3), 267–285.

    Google Scholar 

  • Wooster, R., Bignell, G., Lancaster, J., Swift, S., Seal, S., Mangion, J., et al. (1995). Identification of the breast cancer susceptibility gene BRCA2. Nature, 378(6559), 789–792.

    Article  PubMed  CAS  Google Scholar 

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Acknowledgement

The author would like to acknowledge the assistance of Lorraine Crozier in the preparation of the manuscript. This publication was supported by grant number P30 CA006927 from the National Cancer Institute. Its contents are solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health.

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  1. Division of Population Science, Fox Chase Cancer Center, 333 Cottman Avenue, Philadelphia, PA, 19111, USA

    Mary B. Daly

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Daly, M.B. The Impact of Social Roles on the Experience of Men in BRCA1/2 Families: Implications for Counseling. J Genet Counsel 18, 42–48 (2009). https://doi.org/10.1007/s10897-008-9183-y

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  • DOI: https://doi.org/10.1007/s10897-008-9183-y

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