Abstract
On May 14, 2013 The New York Times printed an op-ed piece by Angelina Jolie entitled, “My Medical Choice” in which she disclosed that she carries a mutation in one of her BRCA1 genes. Since mutations in this gene increase a woman’s lifetime risk of breast and ovarian cancer, to as high as 87% and 50%, respectively, Ms. Jolie elected to have a prophylactic double mastectomy and her public disclosure of this decision put a spotlight on hereditary cancer and genetic testing. We sought to assess the impact of her story, now known as the “Angelina Jolie Effect”, on cancer genetic counseling and patient decision-making. We distributed an anonymous online survey via e-blast to the National Society of Genetic Counselors’ listserv recruiting individuals who provide cancer genetic counseling. We analyzed 178 complete surveys and found that 89% of respondents experienced increases in calls requesting appointments for risk assessment and/or genetic testing, 84.4% saw increases in the number of low risk individuals requesting genetic testing, and 64.4% reported increases in the number of patients seen per week since the publication of the op-ed piece. A majority of genetic counselors (69.4%) also felt that low-risk individuals were more likely to push for genetic testing. Additionally, respondents believed that, since the publication of The New York Times op-ed piece, there was an increased likelihood that BRCA1/2 mutation carriers would ask about and/or have a prophylactic mastectomy or oophorectomy, though the increase was greater for mastectomy. Our study provides the first data on the impact of Angelina Jolie’s story on cancer genetic counseling. Genetic counselors need to be prepared for the effects of celebrity stories, on their clinical practices and patients, and take an active role in helping the media to better communicate the complex issues associated with stories like Angelina Jolie’s.