Missed opportunities: media, celebrities, and BRCA1 screening

Author: Sara M. Nolte, 03/04/14

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A little while ago, I wrote a post about the BRCA1 gene and its role in breast cancer, and suggested that Angelina Jolie’s mastectomy reveal was a missed opportunity to provide information about hereditary breast cancer. I have since wondered what did we get out of the extensive coverage of Jolie’s news? Have there been any changes in how the public perceives breast cancer? Have women’s thoughts about screening and preventative treatment changed? I wanted to know the extent by which the media and celebrities could influence our thoughts and decisions about breast cancer.

Singer Kylie Minogue (top right) and former first-lady Nancy Reagan’s (bottom right) experiences with breast cancer had a strong, yet transient effect on women’s actions towards breast cancer. What kind of influence can we expect from Angelina Jolie’s (left) disclosure of her preventative double mastectomy? Images obtained from Wikipedia.org, as part of Wikimedia Commons.

Singer Kylie Minogue (top right) and former first-lady Nancy Reagan’s (bottom right) experiences with breast cancer had a strong, yet transient effect on women’s actions towards breast cancer. What kind of influence can we expect from Angelina Jolie’s (left) disclosure of her preventative double mastectomy? Images obtained from Wikipedia.org, as part of Wikimedia Commons.

And it seems I’m not the only one with these sorts of questions. A University of Alberta group, headed by Timothy Caulfield, recently examined the coverage of Angelina Jolie’s story in newspapers in Canada, the United States, and the United Kingdom. The group was interested in learning more about how Jolie’s decision was portrayed in major newspapers (e.g. The Globe and Mail, The New York Times, The Daily Telegraph), as well as its influence on broader topics such as BRCA1 screening, breast cancer, preventative medicine, and general impact on health care decisions.

From a collection of over a hundred articles published between May 13 and June 12, 2013, the overwhelming majority portrayed Jolie’s decision as “brave and courageous” or “rational, well-informed, and evidence-based.” Concerns about the high cost of genetic testing were raised in over a quarter of the articles, while an equal number addressed the effectiveness of surgical intervention in preventing breast cancer. However, I found two study results to be particularly interesting, and more than a tad alarming:

(1) Close to 70% of articles neglected to mention the rarity of BRCA mutations, despite highlighting their associated increased risk for breast and ovarian cancer.

(2) While almost half of the articles suggested that Jolie’s public announcement of her decision would raise awareness for BRCA testing and cancer prevention, a mere ten percent of the articles critiqued the potential influence on health care decisions – a phenomenon known as celebrity medicine.

So let’s take a few moments to break down these two points.

Rarity of BRCA mutations

While those with BRCA mutations do have a 45-65% risk of developing breast cancer by age 70, these forms of hereditary breast cancer only comprise 5-10% of all breast cancer cases. In fact, estimates of breast cancer-related BRCA mutations in the general population come in fairly low at 0.2-0.3%.

With such a low occurrence, how do we determine who gets tested? – it’s certainly not feasible or practical to test every woman. Individuals concerned about potential BRCA mutations partake in genetic counseling, a process which seeks to determine the likelihood of that individual having such mutations. Factors that may lead to a recommendation for genetic screening (where a sample of an individual’s DNA is analyzed to determine the presence of known cancer-associated BRCA mutations) include: multiple cases of breast and/or ovarian cancer in the family, a male relative with breast cancer, and early-onset breast cancer (i.e. before age 50). So, contrary to what the news may tell you, genetic testing for BRCA mutations is not for everyone. But let’s be clear here: BRCA genetic screening is NOT mammography – a more accessible and non-heritable breast cancer detection tool (albeit, with its own very large can of worms: the latest controversial study was recently highlighted in the Vancouver Sun; Healthy Debate also offers insight on the harms/benefits of mammography). For those looking for more information on risk assessment, genetic counselling and genetic testing for BRCA-related cancer, this in-depth review is a good place to start.

Celebrity medicine

While it’s likely far too early to examine the effects Angelina Jolie may have had on BRCA screening or preventative mastectomies (Caulfield and colleagues acknowledge that this relationship is definitely something to study in the future), we can look to previous celebrity announcements regarding breast cancer and their effects on public health care choices.

When singer Kylie Minogue announced that she had been diagnosed with breast cancer in 2005, a study by Chapman and colleagues showed that weekly bookings for mammography screening rose 40% during the two weeks surrounding the announcement. There was more than a 100% increase in bookings from women who had previously not been screened, and this effect continued to stand more than a month after the initial news reports.

In 1987, Nancy Reagan elected to undergo a modified radical mastectomy (rather than breast-conserving surgery) upon detection of a suspicious lesion (cell growth) found during a routine mammogram. Nattinger and colleagues’ study found that during the six months after Reagan’s procedure, there was a 25% decrease in the number of American women undergoing breast-conserving surgery, suggesting they may be choosing the more radical procedure instead.

While the influence of Minogue’s and Reagan’s actions was not sustained in the long term, the initial response to their celebrity ‘medicine’ is unnerving. And we’ve seen this kind of celebrity hype before in professional athletes’ use of unproven stem cell therapies.

As Caulfield’s group pointed out, it will be interesting to see how Angelina Jolie’s choice will affect the choices of women across the globe. It is not a question of if, but one of when and by how much. The fact that so many high profile and well-respected newspapers covered her self-disclosed story will likely have played a role in the extent by which Jolie will impact women’s health. So while not everyone may follow the latest celebrity news (though it gets harder when it makes The New York Times front page), it appears as though we are not impervious to celebrity influence – which is scary, especially when it affects something as important as our health.

Research cited:

Kamenova K., Reshef A. & Caulfield T. (2013). Angelina Jolie’s faulty gene: newspaper coverage of a celebrity’s preventive bilateral mastectomy in Canada, the United States, and the United Kingdom, Genetics in Medicine, DOI:
Chapman S., McLeod K., Wakefield M. & Holding S. Impact of news of celebrity illness on breast cancer screening: Kylie Minogue’s breast cancer diagnosis., The Medical journal of Australia, PMID:
Butler Nattinger A. (1998). Effect of Nancy Reagan’s Mastectomy on Choice of Surgery for Breast Cancer by US Women, JAMA, 279 (10) 762. DOI:
Caulfield T. & McGuire A. (2012). Athletes’ Use of Unproven Stem Cell Therapies: Adding to Inappropriate Media Hype?, Molecular Therapy, 20 (9) 1656-1658. DOI:

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Sara M. Nolte

Sara Nolte holds a Bachelor of Health Sciences and Masters of Science in Biochemistry & Biomedical Sciences from McMaster University. Her MSc research focused on developing of cancer stem model to study brain metastases from the lung. She then spent a year working on developing cell-based cancer immunotherapies. Throughout a highly productive graduate career, Sara became interested in scientific communication and education. She is now involved in developing undergraduate programs and courses in the health sciences at McMaster, and is looking for ways to improve scientific communication with the public. Outside of science, Sara enjoys participating in a variety of sports, and is a competitive Olympic weightlifter hoping to compete at the National level soon!
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2 Responses

  1. Koichi Ito says:

    If someone like Sofia Vergara and Brooke Burke both suffered thyroid cancer has BRCA1 or BRCA2 mutation gene? So do you think that either Sofia Vergara or Brooke Burke should undergo preventive full hysterectomy or double mastectomy?

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