title: The Impact of Angelina Jolie (AJ)'s Story on Genetic Referral and Testing at an Academic Cancer Centre in Canada.
abstract: 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.
authors.affiliation: Medical Oncology Department, Breast site, Sunnybrook Odette Cancer Centre, 2075 Bayview Avenue, Toronto, ON, M4N 3M5, Canada. raphaeljack13@hotmail.com.
authors.forename: Jacques
authors.initials: J
authors.lastname: Raphael
authors.affiliation: Medical Oncology Department, Breast site, Sunnybrook Odette Cancer Centre, 2075 Bayview Avenue, Toronto, ON, M4N 3M5, Canada.
authors.forename: Sunil
authors.initials: S
authors.lastname: Verma
authors.affiliation: Cancer Genetics and High Risk Program, Sunnybrook Health Sciences Centre, Toronto, Canada.
authors.forename: Paul
authors.initials: P
authors.lastname: Hewitt
authors.affiliation: Medical Oncology Department, Breast site, Sunnybrook Odette Cancer Centre, 2075 Bayview Avenue, Toronto, ON, M4N 3M5, Canada.|Cancer Genetics and High Risk Program, Sunnybrook Health Sciences Centre, Toronto, Canada.
authors.forename: Andrea
authors.initials: A
authors.lastname: Eisen
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D019313:BRCA1 Protein / Q000235:genetics; D024682:BRCA2 Protein / Q000235:genetics; D001943:Breast Neoplasms / Q000235:genetics* / Q000378:metabolism / Q000517:prevention & control; D002170:Canada; D005197:Famous Persons; D005260:Female; D005817:Genetic Counseling / Q000706:statistics & numerical data / Q000639:trends*; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000706:statistics & numerical data / Q000639:trends*; D006801:Humans; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics* / Q000378:metabolism / Q000517:prevention & control; D012017:Referral and Consultation / Q000706:statistics & numerical data / Q000639:trends; D012189:Retrospective Studies; D055815:Young Adult
chemical_list: D019313:BRCA1 Protein; C492913:BRCA1 protein, human; D024682:BRCA2 Protein; C551750:BRCA2 protein, human
keywords: Angelina Jolie; BRCA1/2; Genetic counseling; Genetic referral; Genetic testing