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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.
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