Familial Cancer

, Volume 12, Issue 4, pp 615–619 | Cite as

Interest of individuals from BRCA families to participate in research studies focused on male BRCA carriers

  • Tuya Pal
  • Susan Vadaparampil
  • Jongphil Kim
  • Yan Xu
  • Sue Friedman
  • Steven A. Narod
  • Kelly Metcalfe
Original Article

Abstract

Although men and women are equally likely to carry a mutation in the BRCA1 and BRCA2 (BRCA) genes, the clinical significance of mutations in men remains incompletely defined. We sought evaluate interest of individuals from BRCA families to participate in a research study focused on men from BRCA families. Through an anonymous survey posted on the website of the BRCA patient advocacy organization, facing our risk of cancer empowered (FORCE), data was collected over a 21 month period (August 2010–June 2012) from members of BRCA families. The survey was completed by 405 individuals with known BRCA mutations, including 150 males and 232 females. The median age of survey respondents was 49 years (50 years for males and 48 years for females). Overall, 84 % of survey respondents indicated prior BRCA mutation testing (95.2 % females, 67.3 % males). For the overall group of survey respondents, 84 % (86 % females, 84 % males) indicated they would tell their male relatives about a research study focused on high risk men from BRCA families, and 53 % (39 % females, 74 % males) thought that their male relatives would be interested in participating in such a study. Despite limited studies focused on men from BRCA mutation positive families, our survey suggests that both male and female family members are highly interested in focused on male BRCA mutation carriers. The importance of further studying this topic is underscored by emerging literature that suggest cancer surveillance and treatment decisions may improve outcomes in men with BRCA mutations.

Keywords

BRCA1 BRCA2 Male carriers Research participation 

References

  1. 1.
    Del Chiaro M et al (1999) BCLC. Cancer risks in BRCA2 mutation carriers. The breast cancer linkage consortium. J Natl Cancer Inst 91:1310–1316CrossRefGoogle Scholar
  2. 2.
    van Asperen CJ et al (2005) Cancer risks in BRCA2 families: estimates for sites other than breast and ovary. J Med Genet 42:711–719PubMedCrossRefGoogle Scholar
  3. 3.
    Risch HA et al (2006) Population BRCA1 and BRCA2 mutation frequencies and cancer penetrances: a kin-cohort study in Ontario Canada. J Natl Cancer Inst 98:1694–1706PubMedCrossRefGoogle Scholar
  4. 4.
    Risch HA et al (2001) Prevalence and penetrance of germline BRCA1 and BRCA2 mutations in a population series of 649 women with ovarian cancer. Am J Hum Genet 68:700–710PubMedCrossRefGoogle Scholar
  5. 5.
    Liede A et al (2002) Contribution of BRCA1 and BRCA2 mutations to breast and ovarian cancer in Pakistan. Am J Hum Genet 71:595–606PubMedCrossRefGoogle Scholar
  6. 6.
    Moslehi R et al (2000) BRCA1 and BRCA2 mutation analysis of 208 Ashkenazi Jewish women with ovarian cancer. Am J Hum Genet 66:1259–1272PubMedCrossRefGoogle Scholar
  7. 7.
    Narod SA et al (2008) Rapid progression of prostate cancer in men with a BRCA2 mutation. Br J Cancer 99:371–374PubMedCrossRefGoogle Scholar
  8. 8.
    Agalliu I, Gern R, Leanza S, Burk RD (2009) Associations of high-grade prostate cancer with BRCA1 and BRCA2 founder mutations. Clin Cancer Res 15:1112–1120PubMedCrossRefGoogle Scholar
  9. 9.
    Mitra A et al (2008) Prostate cancer in male BRCA1 and BRCA2 mutation carriers has a more aggressive phenotype. Br J Cancer 98:502–507PubMedCrossRefGoogle Scholar
  10. 10.
    Tryggvadottir L et al (2007) Prostate cancer progression and survival in BRCA2 mutation carriers. J Natl Cancer Inst 99:929–935PubMedCrossRefGoogle Scholar
  11. 11.
    Edwards SM et al (2010) Prostate cancer in BRCA2 germline mutation carriers is associated with poorer prognosis. Br J Cancer 103:918–924PubMedCrossRefGoogle Scholar
  12. 12.
    Thorne H et al (2011) Decreased prostate cancer-specific survival of men with BRCA2 mutations from multiple breast cancer families. Cancer Prev Res (Phila) 4:1002–1010CrossRefGoogle Scholar
  13. 13.
    Fiorentino M et al (2010) Immunohistochemical expression of BRCA1 and lethal prostate cancer. Cancer Res 70:3136–3139PubMedCrossRefGoogle Scholar
  14. 14.
    Gallagher DJ et al (2010) Germline BRCA mutations denote a clinicopathologic subset of prostate cancer. Clin Cancer Res 16(7):2115–2121PubMedCrossRefGoogle Scholar
  15. 15.
    Mitra AV et al (2008) Targeted prostate cancer screening in men with mutations in BRCA1 and BRCA2 detects aggressive prostate cancer: preliminary analysis of the results of the IMPACT study. BJU Int 107(1):28–39CrossRefGoogle Scholar
  16. 16.
    Landy DC et al (2012) How disease advocacy organizations participate in clinical research: a survey of genetic organizations. Genet Med 14:223–228PubMedCrossRefGoogle Scholar
  17. 17.
    Graves KD et al (2011) BRCA1/2 genetic testing uptake and psychosocial outcomes in men. Fam Cancer 10(2):213–223PubMedCrossRefGoogle Scholar
  18. 18.
    Finlay E et al (2008) Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet Test 12:81–91PubMedCrossRefGoogle Scholar
  19. 19.
    Evans DG, Binchy A, Shenton A, Hopwood P, Craufurd D (2009) Comparison of proactive and usual approaches to offering predictive testing for BRCA1/2 mutations in unaffected relatives. Clin Genet 75:124–132PubMedCrossRefGoogle Scholar
  20. 20.
    d’Agincourt-Canning L (2001) Experiences of genetic risk: disclosure and the gendering of responsibility. Bioethics 15:231–247PubMedCrossRefGoogle Scholar
  21. 21.
    d’Agincourt-Canning L, Baird P (2006) Genetic testing for hereditary cancers: the impact of gender on interest, uptake and ethical considerations. Crit Rev Oncol Hematol 58:114–123PubMedCrossRefGoogle Scholar
  22. 22.
    Wagner Costalas J et al (2003) Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program’s experience. Am J Med Genet C Semin Med Genet 119C:11–18PubMedCrossRefGoogle Scholar
  23. 23.
    Hallowell N et al (2005) Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clin Genet 67:492–502PubMedCrossRefGoogle Scholar
  24. 24.
    McAllister MF, Evans DG, Ormiston W, Daly P (1998) Men in breast cancer families: a preliminary qualitative study of awareness and experience. J Med Genet 35:739–744PubMedCrossRefGoogle Scholar
  25. 25.
    Forrest K et al (2003) To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clin Genet 64:317–326PubMedCrossRefGoogle Scholar
  26. 26.
    Daly PA et al (2003) Predictive testing for BRCA1 and 2 mutations: a male contribution. Ann Oncol 14:549–553PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  • Tuya Pal
    • 1
  • Susan Vadaparampil
    • 1
  • Jongphil Kim
    • 1
  • Yan Xu
    • 1
  • Sue Friedman
    • 2
  • Steven A. Narod
    • 3
    • 4
  • Kelly Metcalfe
    • 3
    • 4
  1. 1.H. Lee Moffitt Cancer CenterTampaUSA
  2. 2.FORCE, Inc.TampaUSA
  3. 3.Women’s College Research InstituteUniversity of TorontoTorontoCanada
  4. 4.Lawrence S. Bloomberg Faculty of NursingUniversity of TorontoTorontoCanada

Personalised recommendations