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

Abstract

Background 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. Methods 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. Results 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. Conclusion 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.

Uptake of Family-Specific Mutation Genetic Testing Among Relatives of Patients with Ovarian Cancer with BRCA1 or BRCA2 Mutation

“…We compared the between the' uptake of FSM testing' and the 'non-uptake of FSM testing' groups. (Table 2) The median surviving family number did not differ significantly between the two groups (median [range]: 8 [3][4][5][6][7][8][9][10][11][12][13][14][15] in the uptake of FSM testing group, 8 [4][5][6][7][8][9][10][11][12][13][14][15][16][17] in the non-uptake of FSM testing group).…”

“…We compared the between the’ uptake of FSM testing’ and the ‘non-uptake of FSM testing’ groups. ( Table 3 ) The median surviving family number did not differ significantly between the two groups (median [range], 8 [ 3 - 15 ] in the uptake of FSM testing group, 8 [ 4 - 17 ] in the non-uptake of FSM testing group). However, the rate of FSM testing was higher within families with living fathers (33.8% vs. 13.3%, p=0.007) or daughters (79.4% vs. 60.3%, p= 0.019) ( Table 3 ).…”

“…Indeed, BRCA1 and BRCA2 mutations are associated with male hereditary cancers, such as male breast cancer, pancreatic cancer, and prostate cancer [ 13 ]. Men can be carriers of the mutated gene; therefore, within families at risk, it is as important to test men, as it is to test women [ 14 , 15 ].…”

Cancer Risks for Men With <i>BRCA1/2</i> Mutations

“…Preliminary research suggests benefits for targeted treatments in individuals with BRCA-associated prostate cancers, including platinum-based treatments and poly(adenosine diphosphate-ribose) polymerase inhibitors (Pal et al, 2013). Preliminary research suggests benefits for targeted treatments in individuals with BRCA-associated prostate cancers, including platinum-based treatments and poly(adenosine diphosphate-ribose) polymerase inhibitors (Pal et al, 2013).…”

“…A survey of 405 individuals with known BRCA mutations (150 men and 232 women) suggested a high interest in more research in this underserved population (Pal et al, 2013). A survey of 405 individuals with known BRCA mutations (150 men and 232 women) suggested a high interest in more research in this underserved population (Pal et al, 2013).…”