Study: Angelina Jolie spoke out on BRCA testing: Did genetic testing increase?
|At a glance||Limitations|
This study is about:
Whether rates of genetic testing and mastectomy were affected by Angelina Jolie’s 2013 New York Times editorial on her decision to have a preventative mastectomy because she carried a mutation.
Why is this study important?
Celebrity endorsements commonly appear on television, in magazines and on the Internet, ranging from skin care products to fad diets. But do these endorsements affect consumer behavior? Not much research is available on this topic. This study compares the time period immediately following Angelina Jolie’s editorial to the period before to see if her editorial resulted in any major changes.
- In the 15 days before Ms. Jolie’s 2013 editorial was published, 0.71 tests were performed per 100,000 women, compared to 1.13 tests per 100,000 women in the 15 days after the editorial was published.
- This increase represents about 4,500 additional tests at an estimated cost of $13.5 million dollars, assuming the average cost per test was just over $3,000.
- About 10% of women who had testing in the months before the editorial had mastectomies. In the 60 days after the editorial was published, about 7% of women who had testing also had mastectomies.
- Overall mastectomy rates did not change in the months following Ms. Jolie’s editorial.
What does this mean for me?
The authors of this study wrote in their conclusion, “Celebrity announcements in the social media age can raise awareness and use of preventive care by a large and broad audience, although their ability to target subpopulations of interest may be limited.”
The authors concluded that increased testing and decreased overall mastectomy rates during this time meant that the additional women who were tested did not carry as many mutations because they did not get mastectomies. The researchers believe that instead of targeting people who were positive for a mutation, the editorial in fact targeted those who were not as likely to carry a mutation.
While the authors’ conclusions were based on one interpretation the data, it is not necessarily accurate. This study was flawed (details are discussed in the Limitations section (below). Most notably, the authors’ conclusion that Jolie’s editorial did not reach the target population (women with a family history of breast, ovarian, , or peritoneal cancer) was based on insurance data. However, to have testing ordered and covered through insurance in 2013, patients most likely had to have a family history of breast/ovarian cancer, ancestry, and/or a personal history of these cancers at a young age.
Patients who are concerned about a genetic cause of breast cancer should talk to a genetics professional, such as a genetic counselor or medical geneticist. These health care providers will assess the patient’s personal and family history of cancer and determine if genetic testing is right for them.
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Desai S and Jena AB. “Do celebrity endorsements matter? Observational study of gene testing and mastectomy rates after Angelina Jolie’s New York Times editorial.” British Medical Journal. Published online first on December 14, 2016.
Jolie A. “My Medical Choice.” New York Times. Published online on May 13, 2013.
This article is relevant for:
People interested in genetic testing for an inherited mutation
This article is also relevant for:
people with breast cancer
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IN DEPTH REVIEW OF RESEARCH
Angelina Jolie wrote an editorial in the New York Times in 2013 to increase awareness of testing and explain her life choices following her positive test result. Drs. Sunita Desai and Anupam Jena from Harvard Medical School’s Department of Health Care Policy published research in the British Medical Journal examining changes in testing and mastectomy rates that may have resulted from the publication of Ms. Jolie’s editorial.
Researchers of this study wanted to know:
Do celebrity endorsements result in population level change in health-related behavior?
Population(s) looked at in the study:
This study looked at information from 9,532,836 women who had claims in the Truven MarketScan commercial claims database, which includes health insurance claims for over 50 million patients.
- In the 15 days before Ms. Jolie’s 2013 editorial was published, .71 tests were performed per 100,000 women, compared to 1.13 tests per 100,000 women in the 15 days after the editorial was published.
- This increase represents about 4,500 additional tests costing $13.5 million dollars, assuming the average cost per test was just over $3,000.
- This increase did not occur during the same time period in 2012.
- About 10% of women who had testing in the months before the editorial had mastectomies. In the 60 days after the editorial was published, about 7% of women who had testing got mastectomies. A “similar pattern” was found 90 and 180 days after testing.
- Overall mastectomy rates for all women (tested or not tested) did not change in the months following Ms. Jolie’s editorial.
The authors acknowledge in their limitations section that they “did not measure benefits associated with knowing one’s status such as peace of mind or increased vigilance after learning one’s risk factors.” Additionally, they were unable to identify from their data which mastectomies were preventative. Their study population also excluded some people, such as Medicare enrollees.
The authors used the post-testing mastectomy rate as an indirect way to measure the number of women who tested positive for mutations. They claim that the increased number of women who were tested after the editorial was published had a lower probability of having a mutation than women who tested before the editorial. Using mastectomy as a measure of positive mutation test results presents several problems. It assumes that mastectomy follows a positive test result, but we know that not all women who test positive for a mutation choose risk-reducing mastectomy.
First, although national guidelines state women with mutations may “consider” mastectomy, it is not a hard and fast recommendation. Many women instead choose to undergo increased screening or take risk-reducing medication to manage their increased risk of breast cancer. Many women with breast cancer who meet guidelines for genetic testing may use testing to help them decide between treating their cancer with or mastectomy. In these cases, mastectomy would occur within a few months of testing. But the study authors argue that women went to their doctors to request testing as result of reading the editorial; these women were presumably previvors (without cancer), who had more time to consider whether or not they wanted to pursue risk-reducing mastectomies. Even those who decide to manage breast cancer risk by having a risk-reducing mastectomy will not necessarily have the surgery within the timeframes used in this study. Recovery from mastectomy, particularly when paired with reconstruction, requires several weeks of rest. Women without cancer are not pressed to schedule mastectomy for treatment; they can delay scheduling their surgery until it syncs with their work and/or family schedule.
Second, national guidelines recommend that women who test positive for a mutation have their ovaries and removed. In many cases, women with mutation choose to have their ovaries and removed before having mastectomy. In 2013, the recommendation was to have this risk-reducing surgery around ages 35-40 and after the completion of childbearing. Women who tested after age 40 might have felt more compelled to have their ovaries removed first. Indeed, over half of the women who underwent testing in this time period were over age 45. Even those under age 40 may have chosen to have their ovaries and removed before pursuing mastectomy, because the surgery has a shorter recovery time and requires less time off work. Removal of the ovaries also decreases breast cancer risk, and can be used in conjunction with increased screening to manage breast cancer risk.
The study authors also wrote that mastectomy rates may have increased after the time captured by their study period. This is something that should not be overlooked and should be studied if researchers want to make the claim that mastectomy rates decreased in a specific time period—mastectomy is a big decision and major surgery, and not all women can immediately make the decision and drop everything in a month after finding a positive mutation to get a mastectomy done. This is particularly true for women who do not have breast cancer and elect to have a mastectomy for prevention, and not as part of cancer treatment, which is precisely the group “targeted” by the Jolie editorial.
Ultimately, the researchers in this study did not have direct data to back their claim that the women who had genetic testing after Jolie’s editorial were not those at risk of having a mutation, because the researchers do not know the exact number of people who tested positive for , their personal or family histories of cancer, or if there was an increase in other medical services such as breast , surgical removal of ovaries and , or prescriptions for risk-reducing medications that would follow a positive test result.
Finally, the authors did not put their research in the context of the current (2016) genetic testing landscape. Testing is offered by more labs and becomes increasingly cheaper as time goes on. Genetics professionals no longer only test for mutations, as research has identified many new breast/ovarian cancer risk-increasing genes such as , , , and more, which are easily tested for on gene panels.
The authors in this study found that testing increased in the 15 days following Angelina Jolie’s New York Times article, but this increase was not correlated with an increase in mastectomy rates in the 60 days following the publication. Based on this premise, the authors concluded that celebrity endorsements reach a broad audience that may not be the targeted population. More definitive data is needed to prove this claim. Regardless of the results of this study, patients with a personal or family history of ovarian cancer or breast cancer before age 50 should not hesitate to see a genetics professional to determine if they should consider genetic testing.
Assessing media coverage of this study is difficult because while many media articles accurately reported on the researchers claims, few dug into the paper or talked to outside experts who could have commented on the many limitations of the methodology. In the end, this study shows that the number of tests in the United States increased in the 15 days following Ms. Jolie’s editorial. However, the conclusions about whether or not these women had a mutation based on whether or not they had a mastectomy are but one interpretation of the data and should have been called out by the media.
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NCCN guidelines recommend genetic counseling and testing for people without cancer who have the following family history:
- A relative who has tested positive for an in a gene that increases cancer risk.
- One or more first- or second-degree relatives with breast cancer and any of the following:
- diagnosed at age 45 or younger
- two separate breast cancers, with the first diagnosis at age 50 or younger
- male breast cancer
- One or more first- or second-degree relatives with:
- colorectal cancer before age 50
- endometrial cancer before age 50
- ovarian, , primary peritoneal cancer
- rare or childhood cancers
- One or more first-degree relatives with:
- or high-grade cancer
- pancreatic cancer
- Two or more relatives on the same side of the family diagnosed with any combination of the following at any age:
- breast cancer
- pancreatic cancer
- adrenal cancer
- brain tumors
- endometrial cancer
- thyroid cancer
- kidney cancer
- diffuse gastric cancer
- colon cancer
- Should I consider genetic testing?
- What are the pros and cons of genetic testing?
- What is my breast cancer risk?
- Will insurance cover the cost of my genetic testing?
- I have a family history of breast cancer, but my genetic testing came back negative. What does this mean?
Below are clinical trials that include genetic counseling and testing.
- NCT02665195: Registry Of MultiPlex Testing (PROMPT). PROMPT is an online research registry. The goal of PROMPT is to help researchers to better understand the risks that are linked to mutations in less well-studied genes.
- NCT02620852: WISDOM Study: Women Informed to Screen Depending on Measures of Risk offers women age 40-74 the opportunity to undergo risk assessment and genetic testing in order to determine the best breast screening options based on their situation.
- NCT04476654: Improving Uptake of Genetic Cancer Risk Assessment in African American Women-Video. This study looks at the usefulness of intervention with a culturally-tailored video to improve uptake of genetic counseling in Black women who are at increased risk of .
- NCT05694559: Connecting Black Families in Houston, Texas to Genetic Counseling, Genetic Testing, and Cascade Testing by Using a Simple Genetic Risk Screening Tool and Telegenetics. This study will provide genetic testing to 150 Black individuals and families and provide genetic counseling and risk reduction resources to individuals with a mutation linked to increased cancer risk.
Other genetic counseling or testing studies may be found here.
FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.
The following resources can help you locate a genetics expert near you or via telehealth.
Finding genetics experts
- The National Society of Genetic Counselor website has a search tool for finding a genetic counselor by specialty and location or via telehealth.
- InformedDNA is a network of board-certified genetic counselors providing this service by telephone. They can also help you find a qualified expert in your area for face-to-face genetic counseling if that is your preference.
- Gene-Screen is a third party genetic counseling group that can help educate, support and order testing for patients and their families.
- JScreen is a national program based out of Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available.
- Grey Genetics provides access to genetic counselors who offer genetic counseling by telephone.
- The Genetic Support Foundation offers genetic counseling with board-certified genetic counselors.
- The American College of Medical Genetics website has a tool to find genetics clinics by location and specialty.
Other ways to find experts
- Register for the FORCE Message Boards and post on the Find a Specialist board to connect with other people who share your situation.
- The National Cancer Institute (NCI)-designated comprehensive cancer centers have genetic counselors who specialize in cancer.
- FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can help you find a genetics expert near you.
Who covered this study?
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