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03/30/2016

What can celebrities do for bioethics?

by Keisha Ray, Ph.D.

Television, film, theater, sports, and music celebrities (and other famous people who only seem to be famous for being famous) capture the public’s attention with tales of the celebrity lives and the perks and downfalls that come with being a public figure. Occasionally, their narratives include topics that are frequently discussed in bioethics. Although it’s great to have the public engaged in topics that we discuss behind closed doors in our offices, classrooms, and laboratories, many times, much to bioethicists and medical practitioners’ irritation, because of their celebrity status they have a large platform to damage the work the medical profession and bioethicists have done to establish a relationship with the public. Sometimes, what I like to think of as the celebrity factor—when celebrities or public figures speak publicly about a particular health problem they are currently experiencing or lend their name and status to popularize and/or sell medical goods—can help spread misinformation about illnesses and mislead patients by giving them unreal expectations of the limits of medicine.

Vaccinations have been on the receiving end of the celebrity factor in recent years. TV personality Jenny McCarthy became an advocate for suspending childhood vaccinations based on a supposed link between autism and the measles, mumps, and rubella (MMR) vaccine. The issue is personal to her as her son was diagnosed with autism. The MMR vaccination and its so-called link with autism was once again subject to the celebrity factor when this past week it was announced that the Tribeca Film Festival would be showing a film directed by now ex-physician Andrew Wakefield (infamous in the bioethics, scientific, and medical community for falsifying a study that purported a link between autism and the MMR vaccine). Well known actor Robert DeNiro, co-founder of the film festival admitted to personally pushing Wakefield’s movie “Vaxxed” to be included in the festival on the grounds of continuing a conversation about vaccinations. Wakefield’s claims about the MMR vaccine and autism link have been found to be untrue and his supposed claims in the movie that the Centers for Disease Control and Prevention covered up data supporting his claims have also been found to be untrue. Perhaps because of public pressure to not open this can of worms again, the Tribeca Film Festival announced that the film would no longer be a part of the festival. Like McCarthy, DeNiro has personal ties to this issue as his son also has autism. In this instance, DeNiro’s celebrity status brings more attention to bad information. Because DeNiro is a household name he has the ability to draw attention to this issue, but it’s attention that’s adding more fuel to the fire that is bad science.

Another notable instance of the celebrity factor was when actress, director, and philanthropist Angelina Jolie announced in 2013 that she would undergo a preventive mastectomy to minimize her chances of breast cancer, which her doctors estimated she had a 87% chance of developing. Jolie wrote several op-ed pieces in the New York Times including a detailed story of her maternal medical history that led to her desire to help other people be proactive about cancer diagnoses and cancer treatment. Jolie also wrote about her decision to remove her ovaries and fallopian tubes to prevent her chances of developing ovarian cancer.

In what the publication Breast Cancer Research calls the “Angelina Jolie effect” after Jolie made her medical procedures public, there was an increase of UK women who were interested in bilateral risk-reducing mastectomy (BRRM) who mentioned Jolie during their doctor visits. The “Angelina Jolie effect” is very similar to the celebrity factor in that celebrity stories of disease, illness, and their overall encounters with medicine have the ability to influence the public. Our worry is how celebrities influence the public’s decisions about health. For instance we have to question whether patients that cite Jolie as their reasoning for getting screened for breast cancer or inquire about BRRM understand that every diagnosis of breast cancer is unique and that they should not take medical advice from Jolie but from a trusted physician.

One way to explain the celebrity factor, such as the case with Jolie, is to think about our overall fascination with celebrities. People get to be celebrities in part because of our adoration. We admire their skills, we want to live their glamourous lives, and we sometimes wish our bodies looked like their bodies or our minds worked liked their minds. Celebrity fandom can reach an almost cult-like status. With our adoration of celebrities comes trust. When celebrities like Jolie say that a particular set of medical treatments worked for them, we believe them. Yes, we admire them, but also we know that because they have extraordinary finances they have access to the best doctors, nutritionists, personal trainers, and other practitioners. So we assume they are getting great advice from the best of the best and when they relay that advice to the public they are believed because they are adored and trusted. At its worst, our adoration of celebrities can be troublesome when they relay information to the public that is not backed by science or when they do not adequately state that the privileges that accompany their celebrity status influenced their health outcomes.

There’s a lot to worry about with the celebrity factor and our adoration of celebrities. A lot of misinformation can be passed down and that misinformation may be more believable and relied upon if it is coming from a celebrity whom people admire. But there is also a lot of good that can come from celebrities publicly discussing their health issues. Sometimes their discussion of their illness is good for the practice of medicine. Sometimes celebrities’ health issues bring taboo topics or misunderstood topics to the forefront of public discourse. For instance when actor Jared Padalecki (Supernatural, Gilmore Girls) spoke about his experiences with mental illness he inspired other people to talk about their battle with mental illness and brought them some hope and comfort. He also inspired people to openly discuss issues associated with mental illness on social media sites. This is great news for medicine because mental illness is a topic we don’t discuss enough in America and a topic that is still clouded by stigmas and hearsay. So if a celebrity like Padalecki can lend his voice and his experiences to expose the misinformation and the stigmas surrounding mental illness, perhaps he will prompt more people to seek medical attention for their own mental illnesses and positively influence how people interact with people with mental illnesses.

If done responsibly, celebrities discussing their health issues can be good for the practice of medicine. It can encourage people to get treatment and it can disassociate disease with stigmas. But the celebrity factor can specifically be good for bioethicists. When celebrities discuss their health issues, people begin speaking more openly about illness and the associated ethical questions they raise for individual sufferers as well as the questions they raise for communities and the profession of health care. More discussions on these topics can lead to more opportunities for bioethicists to engage in public ethics and use popular media sources to educate the public about bioethics issues and exposing the public to the nature of our profession. And this I believe is central to the success and longevity of bioethics as a respected profession.

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