Sexuality, Gender and Race – Studying the Politics of Medical Research

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When society, culture and politics collide with public health, unintended consequences often arise.

Human Papillomavirus, or HPV, is a sexually transmitted disease known to cause cervical cancer in women. Vaccines like Gardasil and Cervarix protect against high-risk strains and are recommended for young girls.

These vaccines, however, have inspired social debates centered around themes of morality and teen sexuality. Amid much controversy, several states have mandated HPV vaccination in girls aged 11 and 12.

While controversies often surround medical research, where classifications based on gender, age, race and sexuality are a part of studying disease, public debate on these classifications can lead to dangerous labeling, sexualization and stigmatization.

Steven Epstein, John C. Shaffer professor in the humanities, professor of sociology and director of the Science in Human Culture Program at Northwestern University, explores the politics of sexuality, gender and race as they relate to medical research and public health in the United States.

At an open lecture Tuesday at the Evanston Public Library, Epstein will discuss attitudes toward HPV vaccination. Medill Reports talked to Epstein Thursday in his office at Northwestern for a preview.

Steven Epstein (photo courtesy of Sarah White/MEDILL)Steven Epstein (photo courtesy of Sarah White/MEDILL)What do you focus on when exploring HPV vaccination and social attitudes?
In the talk I’ll be giving on Tuesday, a lot of what I will focus on are the ways the theme of sexuality set the stage for the conversations that took place – between Merck (Merck & Co., the company that manufactures Gardasil), advocacy groups on the right and left, and agencies like the Food and Drug Administration and the Centers for Disease Control and Prevention – as Gardasil was first coming up for approval back in the previous presidential administration.

I think these debates around the relationship between sexuality and policy are quite fascinating, and when they are brought to bear on a topic that concerns public health, then the stakes are especially high.

In one of your chapters in "Three Shots at Prevention," you explore “the great undiscussable” – HPV and anal cancer in the gay community.
Rates of HPV infection among men who have sex with men are very, very high, and even higher among those who are HIV positive. Now, most HPV infection doesn’t translate into cancer. I think it’s very hard to collect the numbers, but it seems like rates are high enough among gay men that it is a legitimate public health concern.

What role do advocacy groups play in this situation?
Gay health advocates confront several intertwined dilemmas; first, there is relatively limited public visibility and a lot of stigma associated with any condition that is seen as having to do with anal sex; second, there seems to be a fair amount of stigma and shame about the condition within gay communities and among sufferers as well, and you see this in blogs where people talk about their experiences with anal cancer.

It seems to me it’s valuable when advocacy groups try to take some of these undiscussable topics and bring them more into the public arena.

Is there value to open discussion of vaccinating young boys against HPV?
There are several possible benefits to boys to be considered, including prevention of penile cancer, oral cancer, and genital warts. In addition, somewhat beneath the radar screen, there is a subset of young men who have sex with men that are part of a study conducted by Merck. The data that have been released suggest that in those men, Gardasil is also effective in preventing the development of anal, pre-cancerous lesions. So there is good reason to think the vaccine would help prevent anal cancer in men who have sex with men.

How did you become interested in studying the politics of medical research?
I was living in San Francisco in the late 1980s in the midst of the AIDS epidemic, which was decimating the gay community there at the time. There were no treatments that were really working to keep people alive. It was a very grim time in many ways, and I became very interested in the politics of health and the dynamics of health activism. I looked at how AIDS treatment activists became involved in evaluating the methods and the ethics of clinical trials and influencing the process of drug approvals.

Why is the idea of inclusion, meaning having a full diversity of subjects in clinical testing, complicated?
I became increasingly concerned with the way in which notions of difference were being expressed fundamentally in biological terms. The emphasis has been on biological differences between men and women and putatively biological differences between members of different racial and ethnic groups. This has a way of diverting really important attention from the complicated social and political pathways that actually lead to the production of health disparities.

To take a purely biological approach – to reduce the issue to one of biology – is to risk missing a big part of what’s going on, as well as perhaps to reinforce somewhat problematic understandings of things like race as being, in their essence, biological.

For more information about "Sex, Science and Cancer: Politics of the Human Papillomavirus Vaccine (HPV)" at the Evanston Public Library on October 26th, please call (847) 567-3970 or visit our events section.

Epstein's lecture is presented by the Alice Kaplan Institute for the Humanities Evanston Northwestern Humanities Lecture Series.

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