Journal of Genetic Counseling

, Volume 14, Issue 3, pp 207–217 | Cite as

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

  • N. Hallowell
  • A. Ardern-Jones
  • R. Eeles
  • C. Foster
  • A. Lucassen
  • C. Moynihan
  • M. Watson
Original Research

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.

Key Words

BRCA1/2 testing men family decision-making 

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References

  1. 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.PubMedGoogle Scholar
  2. Beauchamp, T. L., & Childress, J. F. (1994). Principles of Biomedical Ethics, 4th ed. New York: Oxford University Press.Google Scholar
  3. 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.CrossRefPubMedGoogle Scholar
  4. 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.CrossRefGoogle Scholar
  5. 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.CrossRefGoogle Scholar
  6. 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.CrossRefGoogle Scholar
  7. D’Agincourt-Canning, L. (2001). Experiences of genetic risk: Disclosure and the gendering of responsibility. Bioethics, 15, 231.CrossRefPubMedGoogle Scholar
  8. 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.CrossRefPubMedGoogle Scholar
  9. 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.PubMedGoogle Scholar
  10. 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.PubMedGoogle Scholar
  11. 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.PubMedGoogle Scholar
  12. 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.PubMedGoogle Scholar
  13. 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.CrossRefPubMedGoogle Scholar
  14. 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.PubMedGoogle Scholar
  15. Haites, N. (2003). The ethical management of genetic testing. Eur J Cancer, 39, 1339–1340.CrossRefPubMedGoogle Scholar
  16. 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.CrossRefPubMedGoogle Scholar
  17. Hallowell, N. (1999). Doing the right thing: Genetic risk and responsibility. Sociol Health Illn, 21, 597–621.CrossRefGoogle Scholar
  18. 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.CrossRefGoogle Scholar
  19. 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.CrossRefPubMedGoogle Scholar
  20. Juengst, E. T. (1999). Genetic testing and the moral dynamics of family life. Public Understand Sci, 8, 193–205.CrossRefGoogle Scholar
  21. 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.PubMedGoogle Scholar
  22. 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.CrossRefPubMedGoogle Scholar
  23. 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
  24. 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
  25. 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.PubMedGoogle Scholar
  26. Nuffield Council of Bioethics. (1993). Genetic Screening: Ethical Issues. London: Nuffield Trust.Google Scholar
  27. O’Neill, O. (2002). Autonomy and Trust in Bioethics. Cambridge, UK: Cambridge University Press.Google Scholar
  28. Petersen, A., & Bunton, R. (2002). The New Genetics and the Public’s Health. London: Routledge.Google Scholar
  29. Strauss, A., & Corbin, J. (1990). Basics of Qualitative Research. London: Sage.Google Scholar
  30. The Breast Cancer Linkage Consortium. (1999). Cancer risks in BRCA2 mutation carriers. J Natl Cancer Inst, 91, 1310–6.Google Scholar
  31. 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.CrossRefPubMedGoogle Scholar
  32. Wexler, N. (1995). Mapping Fate: A Memoir of Family, Risk and Genetic Research. New York: Random House.Google Scholar
  33. 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

Copyright information

© Springer Science + Business Media, Inc. 2005

Authors and Affiliations

  • N. Hallowell
    • 1
    • 7
  • A. Ardern-Jones
    • 2
  • R. Eeles
    • 3
  • C. Foster
    • 4
  • A. Lucassen
    • 5
  • C. Moynihan
    • 3
  • M. Watson
    • 6
  1. 1.Public Health Sciences, The Medical SchoolUniversity of EdinburghUnited Kingdom
  2. 2.Cancer Genetics ClinicThe Royal Marsden NHS Foundation TrustLondonUnited Kingdom
  3. 3.Translational Cancer Genetics Team and Cancer Genetics UnitInstitute of Cancer Research and The Royal Marsden NHS Foundation TrustLondonUnited Kingdom
  4. 4.Macmillan Research Unit, School of Nursing and MidwiferyUniversity of SouthamptonUnited Kingdom
  5. 5.Wessex Clinical Genetics ServicePrincess Anne HospitalSouthamptonUnited Kingdom
  6. 6.Department of Psychological MedicineRoyal Marsden HospitalLondonUnited Kingdom
  7. 7.Public Health Sciences, The Medical SchoolUniversity of EdinburghEdinburghUnited Kingdom

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