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Hereditary Breast and Ovarian Cancer in the Era of Online Health Information: The Case of Angelina Jolie

 

Marleah Dean Kruzelby Dr. Marleah Dean Kruzel, Assistant Professor in Health Communication at the University of South Florida

 

When your mother is diagnosed with breast cancer, it changes your life. When two aunts and a grandmother are diagnosed, and you learn your great-grandma died of breast cancer at 35 years old, you start to wonder…Perhaps cancer isn’t just a disease. Perhaps, in your family, it is a way of life.

 

Because of these family cancer diagnoses, at 24-years old, I underwent genetic testing for the BRCA2 genetic mutation. Unfortunately, like my mother, I tested positive. My healthcare providers estimate that I have an 84% chance of developing breast cancer and a 27% chance of developing ovarian cancer at some point in my life.

 

Testing positive inspired one of my current avenues of research—hereditary breast and ovarian cancer (HBOC). My research investigates individuals who are highly predisposed to HBOC due to the genetic mutation BRCA1/2 but have not been diagnosed with cancer. Often referred to as previvors, such individuals like myself must make informed health decisions in order to protect our health and secure our future. Specifically, I am interested in understanding previvors’ and  their families’ health experiences in order to improve their health, decision-making, well-being, and overall quality of life.

 

Perhaps one of the most well-known previvors is Angelina Jolie. In 2013, Jolie wrote a The New York Times op-ed, disclosing her BRCA1 genetic status and her decision to undergo a preventative bilateral mastectomy in order to prevent breast cancer. Undergoing this surgical procedure reduced her breast cancer risk from 87 percent to 5 percent. Two years later, Jolie wrote another op-ed, revealing her decision to undergo a preventive bilateral salpingo-oopherectomy — the surgical removal of one’s fallopian tubes and ovaries in order to prevent the risk of ovarian cancer.

 

While previous celebrity health announcements such as Magic Johnson’s disclosure about his HIV status or Michael J. Fox’s announcement about his diagnosis with Parkinson’s disease impacted the public, Jolie’s disclosure occurred during the era of online health information seeking.

 

The Internet has changed health and healthcare. Patients are not just using the Internet to obtain information but also to make health decisions. Some perceive the health information they find online to be very informative. In one study published by the Journal of General Internal Medicine, 60% of participants said the Internet information was the “same as” or “better than” the healthcare providers’ information.

 

Angelina Jolie’s celebrity health announcement is a great example of this change. For example, on the day of her 2013 op-ed, visits to the National Society of Genetic Counselors’ ‘Find a Genetic Counselor’ tool received an 86% jump. The National Cancer Institute’s webpages about BRCA, preventative mastectomies, and breast reconstruction also received an increase in visits, clearly demonstrating an increased awareness about hereditary cancer and genetic risk.

Given the interest in Jolie’s op-ed and because the public often listens (and follows) celebrity behaviors, it is important to understand what information individuals are exposed to when searching online for health information regarding Jolie’s story. Thus, in a recent study published by Health Communication, I analyzed websites covering Jolie’s 2013 op-ed. My analysis of 92 unique websites — across Google, Yahoo, and MSN search engines — revealed four main themes: 1) information about genetics, 2) information about a preventative bilateral mastectomy, 3) information about health care, and 4) information about Jolie’s gender identity.

 

Information about Genetics

First, when searching for information about Jolie’s op-ed, online health information seekers are exposed to information about genetics. Almost every website mentioned the BRCA genetic mutation. A few described the genetic mutation in depth, explaining who is susceptible and why. Yet perhaps most interesting was that some websites emphasized that individuals should not be misled by this story and carefully assess their individual risk factors before making decisions.

 

Information about a Preventative Bilateral Mastectomy (PBM)

Second, the websites discussed information about Jolie’s PBM — describing the surgical procedure and explaining her reconstruction. The websites also discussed Jolie’s reasons for undergoing a PBM (e.g., the importance of being there for her family and worrying about a possible future diagnosis of cancer). Moreover, some of the websites used Jolie’s story as a way to discuss other health options for individuals who test positive for a BRCA genetic mutation, which include increased surveillance and chemoprevention.

 

Information about Health Care

Third, when using the Internet to seek health information about Jolie, individuals are exposed to information about healthcare services, costs, and insurance coverage. For one, many websites noted Jolie’s privilege to the best healthcare providers and services — luxuries which are not available to everyone. Building on this idea of “red carpet health care,” several websites also discussed issues regarding the high costs of genetic testing and access to insurance.

 

Information about Jolie’s Gender Identity

Finally, a majority of the websites articulated Jolie’s gender identity as a sexual icon, a partner in a relationship, a mother, and a humanitarian. Many websites commented on how shocking Jolie’s PBM decision was given her beauty and sexual appeal. Additionally, some websites mentioned Jolie’s romantic relationship to Brad Pitt and her role as a mother as driving factors for her health decision. Lastly, the websites also portrayed Jolie as a humanitarian — an individual committed to promoting human welfare and well-being.

 

So what can we learn from Angelina Jolie’s celebrity health announcement?

  1. Celebrity health announcements such as Jolie’s story impact the public’s perceptions and even behaviors. As such, health messages from celebrities should be clear and specific, seeking to help the public understand an issue. It is our responsibility as patients to verify online health information with additional sources such as our healthcare providers.
  2. News outlets including online outlets often focus on the celebrity’s cancer story. Thus, as patients we need to be critical of what we read, examining if the source is reliable or not.
  3. Online health information can be helpful in making personal health decisions. As patients we should gather any and all information that we think may be helpful; yet at the same time, we need to take the information we find as one perspective. Because ultimately, we need to make the best decision for us.

 

Overall, my journey has been an emotional one but a good one. There are days I worry about whether I will be diagnosed with HBOC. Yet, knowing about my lifetime risk is empowering, and through my research and volunteer work, I get to interact with women and men who encourage and inspire me daily.

 

Note: Portions of this piece were originally published on Dr. Marleah Dean Kruzel’s blog, The Patient and the Professor.”

 

 


 

 

Article Source:

 

Dean, M. (2016). Celebrity health announcements and online health-information seeking: An analysis of Angelina Jolie’s preventative health decision. Health Communication, 31, 752-761. doi: 10.1080/10410236.2014.995866

 


 

Dr. Marleah Dean Kruzel is an Assistant Professor in Health Communication at the University of South Florida, Tampa, FL. She studies patient-provider health communication and is currently examining genetics and risk communication in the context of hereditary breast and ovarian cancer. A BRCA2 previvor herself, Marleah is committed to translating her research into practice, which is why she volunteers at FORCE and maintains a blog called “The Patient and the Professor.” For more information, visit www.cancercommunicationresearch.com.

 


 

Breast Cancer Screening in BRCA1/2 Carriers

by Rosanna Grobbink, B.Sc, ND (Cand)

As practitioners with a special interest in the prevention of disease, naturopathic oncologists often are asked by patients to discuss the topic of potential risks involved with various types of diagnostics.  A common concern of a patient is the long term effect of radiation emitting imaging.  This is especially a concern if the imaging must be repeated frequently.

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