Most People Don’t Understand the Genetic Risks for Breast Cancer

While adults were well aware Angelina Jolie underwent a preventive mastectomy, the news did not translate into a greater understanding of the genetic risk factors that led her to make that decision, according to the results of a survey.

The survey of 2,572 adult men and women found that 75% were aware of Jolie’s story, but fewer than 10% of those could correctly answer questions about the BRCA gene mutation that she carries and was the basis for her decision. The results were published in December by the journal Genetics in Medicine.

"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 prophylactic surgery," explained lead author Dina Borzekowski, EdD, a research professor in the University of Maryland School of Public Health's Department of Behavior and Community Health, in a news release. "It feels like it was a missed opportunity to educate the public about a complex but rare health situation."

In addition, Ms. Jolie’s story led to greater confusion about the relationship between a family history of cancer and an increased risk of cancer, the survey found, with about half of those surveyed incorrectly thinking that a lack of family history of cancer was associated with a lower than average personal risk of cancer. Similarly, respondents who were aware of Jolie’s story and had at least 1 close relative affected by cancer were less likely than those who were unaware of her story and had a close relative affected by cancer to estimate their own cancer risk as higher than average.

"Since many more women without a family history develop breast cancer each year than those with, it is important that women don't feel falsely reassured by a negative family history," said Debra Roter, DrPH, coauthor of the study and Director of the Center for Genomic Literacy and Communication at the Johns Hopkins Bloomberg School of Public Health.

The authors argued that clinicians should seek ways to better communicate clear information to high-risk populations, and to capitalize on celebrity personal stories that could raise awareness of a health issue.

“Preparing for inevitable future events similar to the Angelina Jolie’s announcement involves transforming heightened public awareness into heightened public understanding and appropriate use of medical resources,” the authors concluded.

Pertinent Points:
- Awareness of Angelina Jolie’s preventive mastectomy did not increase understanding of the genetic risk factors associated with the BRCA gene mutation.
- Clinicians and public health officials should found ways to better capitalize on the personal health stories of celebrities to ensure heightened public understanding of medical issues.

References:

Borzekowski DLG, Guan Y, Smith KC, et al. The Angelina effect: immediate reach, grasp, and impact of going public. Genet Med. 2013;doi:10.1038/gim.2013.181.