by Lisa Schlager, Lisa Rezende, PhD and Sue Friedman
Angelina Jolie’s May 2013 New York Times editorial “My Medical Choice,” which detailed her decision to have a double mastectomy because she carries a BRCA1 mutation brought unprecedented attention to hereditary cancer and BRCA genetic testing.
This “Angelina Effect” created an avalanche of public awareness of BRCA genetic testing. Many members of the hereditary cancer community, health care providers, and advocacy groups like FORCE applauded the op-ed. It normalized and removed the stigma from terms like “mastectomy” and “mutation.”
But not all reactions were positive. Critics argued that Jolie’s disclosure negatively impacted public health, resulting in unnecessary medical tests and procedures. A recent Harvard study concluded that the op-ed led to a multimillion-dollar waste of health care dollars. The study had many limitations, and the Harvard researchers’ conclusions were flawed. Sensational media headlines further amplified the negative. Vox.com called this a case of “celebrity-induced overtesting.”
Reviewing BRCA testing requests before and after the op-ed, the Harvard researchers found that BRCA testing increased in the 15 days following Jolie’s piece, while mastectomy rates during the 60 days following the publication did not increase. The researchers interpreted this to mean that the additional women who were tested during this time avoided mastectomies because they tested negative for a BRCA mutation. But researchers did not have access to women’s genetic test results; they made assumptions about test results based on mastectomy rates 60 days after the testing.
Limitations of the study
A FORCE XRAYS review of the Harvard research and the subsequent media coverage found that researchers missed the mark in the study design, analysis, and report. They failed to acknowledge numerous factors that should have influenced their conclusions, including:
- The timeline for medical appointments like genetic counseling, and procedures such as genetic testing or mastectomy can take several months.
- Many women with a mutation do not pursue mastectomy in the months following genetic testing—or ever.
- Many women with mutations opt to remove their ovaries first; especially those over age 40 who have completed childbearing.
- Many women who meet genetic testing guidelines test negative for a mutation. The researchers equated a negative test with waste of health care dollars while ignoring the value of identifying women without a mutation, including quality of life, peace of mind, and avoiding unnecessary medical services such as increased surveillance or risk-reducing surgery.
- Women without a mutation may opt for bilateral mastectomy. Testing in 2013 missed newly-identified mutations that increase risk for breast cancer.
- The authors overstated the cost of testing. In May 2013, “full-sequencing” BRCA testing was about $3,000, while single-site testing for people with a known family mutation was about $400.
While most of the media coverage ignored the study’s many flaws, notable exceptions include Stat News, which earned a 5-Star XRAYS rating for its accurate coverage. The National Society of Genetic Counselors posted a great response in their blog.
Patient input can improve research
This disclosure at the end of the article highlighted another reason why the researchers got this study so wrong:
Patient input enhances all aspects of the research process, helping researchers avoid some of the limitations that were so apparent in this study. FORCE’s ABOUT Network and FRAT program are examples of programs that facilitate patient input to ensure that research results are relevant to patients.
Why it matters
Poorly-designed studies like this one could be used as ammunition against requiring insurance companies to pay for preventive services at no cost to patients. This includes coverage of genetic counseling and testing for women with a family history of cancer suggestive of a BRCA mutation. Access to these, and other preventive services could be hindered if the Affordable Care Act is repealed. This is why FORCE will continue our efforts to assure that our community has access to lifesaving medical care. You can track important issues on our website’s new advocacy section.
Consumers are inundated with sensational headlines, fake news, “alternative facts” and issue polarization. It can be difficult for lay people to discern what is accurate. Research can have a powerful influence on medical decision-making, as well as health policy. This article and the media coverage that followed fits a political narrative about health care overspending that could negatively impact our community. Therefore, it is important to hold researchers and the media accountable for accurate medical reporting. Through XRAYS and other programs, FORCE will continue to do just that.Tags: ATM, brca, BRCA 1, BRCA 2, brca research, brca testing, BRCA2, breast cancer, breast cancer prevention, CHEK2, gene testing, HBOC, hereditary cancer, hereditary cancer research, PALB2, previvor, prophylactic mastectomy