Publicizing the Illnesses of Celebrities: Is it Ethical?
Barron H. Lerner, MD, PhD,who is Associate Professor of Medicine and Public Health at Columbia University Medical Center and is the author of “When Illness Goes Public: Celebrity Patients and How We Look at Medicine,” just published by Johns Hopkins University Press sent me today the following commentary. He raises some interesting ethical concerns regarding the consequences of such publicity. Read his thoughts on this subject below and you may also wish to read his book. Let me know what you think about the ethics of this not uncommon social experience. ..Maurice.
Celebrity illnesses have alerted the public to a series of diseases—think of Lou Gehrig’s amytrophic lateral sclerosis, Betty Ford’s breast cancer, Arthur Ashe’s AIDS and Michael J. Fox’s Parkinson’s disease. But these cases have also raised a series of challenging ethical issues.
For example, celebrities have often “pushed the envelope” as far as experimental treatments go. Few realize that Gehrig participated in a clinical trial of Vitamin E injections for his disease beginning in 1939. The civil rights lawyer Morris Abram received two types of experimental immunotherapy for treatment of his acute myelogenous leukemia beginning in 1973. And actor Christopher Reeve advocated aggressively for embryonic stem cell research, which he believed would lead to remarkable breakthroughs in the treatment of his quadriplegia.
However, undergoing, publicizing and advocating for such therapies can create ethical problems. Members of the public with the same diseases, feeling desperate and assuming that celebrities necessarily get the best care, may assume that they should also enroll in experiments. As one woman with Parkinson’s said of Michael J. Fox, ““I just tried to follow right behind him and step in the footprints.” In addition, because society lionizes its celebrities, their illnesses are almost always remembered in a positive light. Thus, readers of The New York Times were told, incorrectly in retrospect, that Gehrig’s and Abram’s experimental therapies had been highly effective. In Reeve’s case, the potential value of stem cell research remains highly remains controversial.
Another ethical issue raised by celebrities concerns the allocation of research funding. These days, it seems that having a big name celebrity spokesperson is the best way to ensure funding support for a given disease. Such individuals are able to attract the attention of both the media and members of Congress. For example, Yasmin Aga Khan, the daughter of actress Rita Hayworth, who died of Alzheimer’s, has made several successful fundraising appearances for the disease on Capitol Hill. Fox has done the same for Parkinson’s and Lance Armstrong has been a tireless advocate for new cancer breakthroughs. While it is logical to think that scarce research dollars should instead be allocated based on need and chance of success, the current situation is unlikely to change.
And famous patients may not be purely altruistic in their advocacy efforts. In 2002 a scandal emerged when it was learned that a series of celebrities—including Kathleen Turner, Olympia Dukakis and Rob Lowe—had booked themselves onto talk shows to tout the supposed virtues of various pharmaceutical products. The fact that they were being paid to do so was unsaid until the media outed this practice.
In sum, celebrities can perform a great service in publicizing diseases and informing others about possible advances. But by dint of their great popularity, celebrity patients can also wield too much power, potentially misleading sick people at a most vulnerable time.