Back in May, actress Angelina Jolie wrote a New York Times op-ed about her decision to undergo a double mastectomy. Jolie’s mother, Marcheline Bertrand, died of breast cancer, which made the actress hyper-aware that she's genetically predisposed to developing the disease. So Jolie took medical precautions, had a mastectomy, and wrote publicly about her experience to raise awareness about how to reduce the risk of getting breast cancer.
But according to new research, Jolie’s story in the New York Times actually didn’t end up leading to an increased understanding of the genetic risk of breast cancer. The study, published Dec. 19 in Genetics In Medicine, revealed that 75 percent of 2,500 surveyed Americans were aware of Jolie's story. But less than 10 percent of people correctly answered questions about the typical woman's risk of developing breast cancer, including the BRCA gene mutation that Jolie carries and wrote about.
"Ms. Jolie's health story was prominently featured throughout the media and was a chance to mobilize health communicators and educators to teach about the nuanced issues around genetic testing, risk and [preventive] surgery," said Dina Borzekowski, the study’s lead author. "[It] feels like it was a missed opportunity to educate the public about a complex but rare health situation.”
Borzekowski’s research also indicated that about half of survey respondents were under the impression that a lack of family history of cancer was associated with a lower-than-average personal risk of the disease, which just isn't true. Also, out of those who had at least one close relative with cancer, those who were aware of Jolie's story (39 percent) were less likely than people who were not aware (59 percent) of her experience to estimate their own cancer risk as higher than average.
Back in May, Jolie wrote in the Times:
Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.
Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.
On April 27, I finished the three months of medical procedures that the mastectomies involved. During that time I have been able to keep this private and to carry on with my work.
But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.
It’s hard not to feel inspired when you hear a story like Jolie’s: a very public figure coming forward with their own deeply personal experiences with the intention of helping others. This specific incident, however, might serve as a reminder that not all public attempts at raising awareness are successful at getting a message across as we might like to think.