Angelina Jolie's decision to have a double mastectomy after genetic testing has prompted a discussion about which other tests should be covered. (Gage Skidmore/Flickr)
(Gage Skidmore/Flickr)

In one of the bigger stories this year, actress Angelina Jolie caught both celebrity-watchers and health advocates off guard in May when she revealed in a New York Times op-ed that she had had a double mastectomy. She did this, she explained, because she carried a rare gene mutation that increased her likelihood of developing breast cancer to 87 percent.

Jolie’s mother died of breast cancer at 56. Jolie was careful to explain why her situation was unusual. “Only a fraction of breast cancers result from an inherited gene mutation,” she wrote. About 5 to 10 percent of all breast cancers are related to a BRCA 1 or BRCA 2 mutation.

But a new study shows that while her story certainly got a lot of attention, it unfortunately didn’t do much to increase people’s understanding of actual breast cancer risk.

From NPR:

Researchers at the University of Maryland and Johns Hopkins surveyed over 2,500 Americans and found that while 3 out of 4 knew that Jolie had gotten a mastectomy, less than 10 percent properly understood Jolie’s condition.

The results were published this week in the journal Genetics in Medicine. …

Indeed, Jolie might have gotten some people more confused how a family history of cancer plays into an individual’s risk, the survey found.

The researchers surveyed participants while Jolie’s story was still fresh in their minds — within three weeks of when she published her piece in the Times. …

News coverage about Jolie’s mastectomy tended to gloss over how rare her situation was, another recent study found. The genetic mutation that Jolie has only accounts for 5 to 10 percent of all breast cancer cases.

It’s not surprising that people don’t retain the details, says Dr. Robert Klitzman, director the graduate bioethics program at Columbia University, especially with rare and complex cases.

“Overall the point is there was more awareness,” he says. If more women are aware that their genes could affect their risk of breast cancer, they’re more likely to ask their doctors about it, according to Klitzman.

But that doesn’t mean every woman needs a blood test to determine whether she carries the BRCA mutation, as the American Cancer Society’s chief medical officer Otis Brawley noted in a statement released hours after Jolie’s piece was published.

Look Up Your Risk

The U.S. Preventive Services Task Force recommends that women whose family history of breast or ovarian cancer appears to put them at risk of having a BRCA mutation be referred for genetic counseling.

But even if you have a history of breast cancer in your family, it does not necessarily mean you have a BRCA mutation. Only .1 to .2 percent of people carry a BRCA 1 or BRCA 2 mutation.

You can assess your breast cancer risk by using this online screening tool from the National Cancer Institute. But I also like this screening tool from the Georgia Breast Cancer Genomic Consortium specifically to determine if you are at risk for hereditary breast or ovarian cancer (i.e. breast cancer linked to a BRCA mutation). I have a family history of breast cancer on both my mother’s and my father’s side of the family. The calculator provided a plain English summary of my risk of having a BRCA mutation:

  • You are unlikely to be at increased risk for Hereditary Breast/Ovarian Cancer.

That is pretty clear.

Despite Angelina, People Misunderstand Breast Cancer Risk; Look Up Your Risk Online 27 December,2013Lisa Aliferis


Lisa Aliferis

Lisa Aliferis is the founding editor of KQED’s State of Health blog. Since 2011, she’s been writing and editing stories for the site. Before taking up blogging, she toiled for many years (more than we can count) producing health stories for television, including Dateline NBC and San Francisco’s CBS affiliate, KPIX-TV. She also wrote up a handy guide to the Affordable Care Act, especially for Californians. Her work has been honored for many awards. Most recently she was a finalist for “Best Topical Reporting” from the Online News Association. You can follow her on Twitter: @laliferis

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