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Cabstract
J Genet Couns. Epub 2013 Jul 13.
We
surveyed cancer genetics specialists in 1998 to learn what they would
do if at 50% risk to carry a BRCA or Lynch syndrome mutation. We chose
to repeat our study 14 years later, to examine how perspectives have
changed with the extensive data now available. In July 2012 we surveyed
the National Society of Genetic Counselors (NSGC) Cancer Special
Interest Group via an internet based survey. We found statistically
significant increases in the percentage of specialists who: would
undergo BRCA testing (p = 0.0006), opt for prophylactic bilateral
mastectomy (p =0.0001), opt for prophylactic removal of their uterus and
ovaries for Lynch syndrome (p =0.0057 and P = 0.0090, respectively),
and bill testing to insurance (p >0.0001). There were also
statistically significant decreases in the percentage of participants
who would have their colon removed for Lynch syndrome (p = 0.0002) and
use an alias when pursuing testing (p > 0.0001). Over the past 14
years there has been a major change in perspective amongst cancer
genetic specialists regarding genetic testing, prophylactic surgery and
insurance discrimination.
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