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
I’m still hoping the real “Jolie Effect” will be that more women are given more accurate information about breast reconstruction. Here is one of the most beautiful women in the world who (after horrifying, though life-saving surgery) is telling the world she still feels beautiful. That’s a powerful, hopeful message.
I think there’s a tendency among people to not want to think about it, to assume it won’t happen to them, so they don’t pay attention. Then there’s the issue of preventive surgery and its 2 divided and heated camps. I found out after I was diagnosed with BC that I was positive for the BRCA2 gene. I’m glad I didn’t know beforehand because I wouldn’t have opted for preventative surgery, but would’ve certainly been freaked out. Of course, to not have preventive surgery might be my choice but I certainly don’t judge those who go the Jolie route, but it has stirred up a lot of passionate discussion.
I think it can give people a false sense of security. Most folks don’t read much farther than “celebrity with inherited mutant gene” because they are A. not celebrities and B. don’t have anyone in their family who has ever had breast cancer. Since they can’t see themselves in this particular case, they come to the erroneous conclusion that they are “safe” and think no more of it.
And I can totally understand that. It;s very psychologically comforting to be able to say “that’s not me and won’t ever be me.”
In my case that made the psychological shock all the worse when I was disgnosed. Wait a minute, folks, I don’t have anyone in my family who ever had breast cancer and I’m under 50 and I lifted weights and walked a lot and didn’t take oral contraceptives and so on and so forth. So why in the hell did this happen to ME?
I know, I know. Total failure to recognize the cosmic crapshoot of life and the possible Black Swan in my future. Speaking of which Taleb’s book Antifragile which I’m reading right now has some good heuristics for dealing with randomness – he suggests ways of becoming robust or antifragile. Which is NOT about controlling events or avoiding them, it is about moving from fragility (which I think I was pre-diagnosis) to something else. He writes:
“We can simplify the relationship between fragility, errors and antifragility as follows. When you are fragile, you depend on things following the exact planned course, with as little deviation as possible-for deviations are more harmful than helpful. This is why the fragile needs to be predictive in its approach, and, predictive systems cause fragility.”
Think about that – the illusion of prediction causes fragility. I suspect he’s right.
Very informative post, Marie. And very interesting comments on fragility, Victoria. Thanks.
Thanks for this post and the light it helps shine on BRCA mutations and hereditary breast and ovarian cancer (HBOC). While much of the information was right on, from my experience as a BRCA2 mutation carrier, I would also add that there are some more specific guidelines out there for whether someone might consider genetic testing in the HBOC arena that might be helpful for some of your readers.
To call out a few elements, some well known and others not — Anyone with ovarian cancer is now considered a potential candidate for BRCA testing. Other red flags include breast cancer at a young age, breast cancer in both breasts, or male breast cancer. Persons with Ashkenazi Jewish background are also more likely to have a BRCA mutation and the bar for testing them is lower than in the general population.
See http://www.facingourrisk.org/info_research/hereditary-cancer/hereditary-genetics/index.php, on the FORCE website, for example, which includes the following:
“Signs of an hereditary breast-ovarian cancer syndrome in a family include, but are not limited to any family member with:
Ovarian or fallopian tube cancer at any age
Breast cancer at age 50 or younger
Breast cancer in both breasts at any age
Both breast and ovarian cancer
Male breast cancer
“Triple-negative” breast cancer
Ashkenazi Jewish heritage and breast cancer before age 60
More than one relative on the same side of the family with any of these cancers:
Ovarian or fallopian tube cancer
Thanks again for the post!
Thanks everyone for sharing your great insight – an especially big thank you to Linda for expanding the information – BRCA is not my area of expertise, so I am most grateful to you for your information.
I missed that study too, so thanks for the catch Marie.
There was more than just the missed opportunity for a more purposeful message around BRCA. The coverage also made it seem as if reconstruction obviously follows mastectomy, and of course it’s not a given. A woman has a choice to use breast forms, or live without either. Without getting into the debate, there are options, some are safer for individuals than others, but the media skipped that part, which was a great shame.
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