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abstract:
The Impact of Angelina Jolie (AJ)’s Story on Genetic Referral and Testing at an Academic Cancer Centre in Canada
In May 2013, Angelina Jolie revealed to the
media that she had undergone preventive double mastectomy after testing
positive for a BRCA1 gene mutation.
Media coverage has been extensive, but it is not clear how such a
personal story affected the public and cancer genetics clinics. We
conducted a retrospective review using data from the clinical database
of the Familial Cancer Program at our centre. The impact of Ms. Jolie’s
story on genetic counseling referrals and the appropriateness of such
referrals were assessed and reported. The number of women referred for
genetic counseling increased by 90 % after 6 months and remained high
one year after AJ’s story with an increase of 88 % from baseline. The
number of women who qualified for genetic testing increased by 105 %
after 6 months; this increase persisted but was somewhat lower after one
year with an increase of 68 % from baseline. Furthermore the number of BRCA1/2 carriers identified increased by 110 % after 6 months and by 42 % after one year.
The
effect of Mrs. Jolie’s story persisted one year after its release;
however in the latter half of the year, the hereditary cancer risk of
referred women was significantly lower than initially observed. The next
challenge for our health care system will not only be to meet the
increased demand for cancer genetic services in our region, but also to
ensure that referrals and hence use of genetic counseling resources are
appropriate.
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