Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems

Description/Abstract

This qualitative interview study explored the way in which information
about predictive BRCA1/2 testing and its implications for children is
disseminated within the families of at-risk men who undergo genetic
testing. Twenty-nine in-depth interviews were carried out with family
members [male patients (n ¼ 17), their partners (n ¼ 8) and adult children
(n ¼ 4)]. These explored the following themes: experiences of
cancer and genetic testing, decision-making about testing and the communication
of test results and genetic information within the immediate
family. The interviews revealed that both male patients and their partners
perceive themselves, rather than health professionals, as responsible
for disclosing information about genetic testing and genetic risks to
their children. Parents described three different communication strategies
for the disclosure of genetic information to their children: complete
openness, limited disclosure and total secrecy. The adoption of a particular
communication strategy was justified in terms of children’s rights
to information vs their parental duties to protect their children from
anxiety-provoking information. Some of the problems arising from the
adoption of different disclosure patterns are identified and the implications
for clinical practice are discussed.