The Angelina Jolie Effect: What Difference Did It Make?
Seems I missed this study published late last year in Genetics In Medicine, a scientific analysis of the Angelina Jolie effect. You will recall that back in May 2013, Angelina Jolie revealed in a New York Times opinion piece that she had undergone a preventive double mastectomy because she had a family history of cancer and carried a rare mutation of the BRCA1 gene. Media coverage at the time was extensive, but what was the take-home message by the public?
Researchers conducted a survey with a representative national online panel of 2,572 adults. Participants described their awareness and identified information sources for the Angelina Jolie news story. They also reported their understanding, reactions, perceptions, and subsequent activities related to the story. Demographic information was collected, as was family risk for breast and ovarian cancer, and a gauge of numeracy.
The results of the study are interesting. While three of four Americans were aware of Angelina Jolie’s double mastectomy, fewer than 10% of respondents had the information necessary to accurately interpret Ms Jolie’s risk of developing cancer relative to a woman unaffected by the BRCA gene mutation.
The study concluded that awareness of the Angelina Jolie story was not associated with improved understanding. As explained by lead author, Dina Borzekowski, research professor in UMD’s Department of Behavior and Community Health:
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,… [instead] it feels like it was a missed opportunity to educate the public about a complex but rare health situation.
It appears that while celebrities can bring heightened awareness to health issues, there is a need for these messages to be accompanied by more purposeful communication efforts to assist the public in understanding and using the complex diagnostic and treatment information that these stories convey.
Facts About BRCA Gene
- BRCA1 and BRCA2 are human genes that belong to a class of genes known as tumor suppressors.
- In normal cells, BRCA1 and BRCA2 help ensure the stability of the cell’s genetic material and help prevent uncontrolled cell growth. Mutation of these genes has been linked to the development of hereditary breast and ovarian cancer.
- The names BRCA1 and BRCA2 stand for breast cancer susceptibility gene 1 and breast cancer susceptibility gene 2, respectively.
- A woman’s risk of developing breast and/or ovarian cancer is greatly increased if she inherits a BRCA1 or BRCA2 mutation. Men with these mutations also have an increased risk of breast cancer. Both men and women who have harmful BRCA1 or BRCA2 mutations may be at increased risk of other cancers.
- Many research studies are being conducted to find newer and better ways of detecting, treating, and preventing cancer in BRCA1 and BRCA2 mutation carriers. Additional studies are focused on improving genetic counseling methods and outcomes. Our knowledge in these areas is evolving rapidly.
- Have you or a close relative been diagnosed with cancer at an early age?
- Do you have more than one relative with the same type of cancer? If yes, is the same type of cancer found in more than one generation?
- Has any one person in your family had more than one type of cancer?
- Has anyone in your family been diagnosed with bilateral (both sides) cancer of paired organs (e.g., breasts, ovaries, kidneys)?
- Are you related to someone who is known to have an inherited mutation that can cause cancer?
Borzekowski, D. et al, The Angelina effect: immediate reach, grasp, and impact of going public. Genetics in Medicine (2013) doi:10.1038/gim.2013.181