Steven Epstein is John C. Shaffer Professor in the Humanities and Professor of Sociology at Northwestern University. He has conducted extensive research on the sociology of biomedicine, health, illness, especially regarding the connections between gender, sexuality, and race and the politics of science. His area of interest includes the politics of the HIV/AIDS epidemic and the sociology of sexuality and LGBT/queer studies, among many other critical societal issues. Professor Epstein has long been recognized for his contribution in his field, receiving the John Simon Guggenheim Fellowship, a residency fellowship at the Center for Advanced Study in the Behavioral Sciences, and highly distinguished prizes for his books, such as the Ludwik Fleck Book Prize and C. Wright Mills Book Award. All the while, he has also been continually writing publications that provide insights into the workings of social politics within the realm of science. Below is his interview with NURJ that sheds light into his career as a sociology and humanities researcher.
How did you discover the intersection between sociology and biomedicine?
It happened when I was a doctoral student at UC Berkeley. I had some previous exposure to medical sociology as an undergraduate – I took a class in that area. I graduated school at exactly the same time as the AIDS epidemic emerged as a major disaster around the world and the country, but very much so in the Bay Area – San Francisco, of course, was an epicenter in those early years. I felt that it was very important for sociologists to think about the implications of a medical emergency using all of the insight that sociologists could bring to bear. In order to do that, though, I thought it was important for sociologist to grapple with the details of the biomedical work being done. That really brought me to take an interest in the sociology of science, a field that I hadn’t really thought about much until then, but it was a discipline where there was a lot of emphasis placed on actually understanding the science that was at stake in the midst of social controversies. That really put me on track to develop a research career in which I focused on the intersection of social and political processes with biomedical ones.
How did you become invested in the AIDS activism movement?
I was living in San Francisco, and going to school in Berkeley at the time of this raging epidemic made me feel that if sociology was worth something as a field, it should have something important to say about what was going on right at that time. I was also interested in the theoretical questions that had to do with the politics of knowledge and expertise. When I saw activists who seemed phenomenally self-educated about the aspects of the disease and particularly the research concerning treatments – I was very impressed. Where did they learn all this science and how did they know what they were talking about? I was fascinated by that particular activism because it was different from other kinds of activism related to science and technology. Here the activists were actually seeking to democratize science itself – how could that be? Given how grim a time it was back then, and given my interest in writing a dissertation that had to do with the epidemic, I didn’t mind the fact that I found my way to an example that, at least in some respects, was more hopeful.
Did you feel very invested in the movement personally? What about social movements interest you?
Yes and no. I did have a bit of an activist background in my time living in the Bay Area; I was involved in a few activists group around other issues mostly about peace, social justice, disarmament, antinuclear movements. I had a certain kind of activist sensibility, but I think that I quickly realized that I was not interested in writing a book that was simply cheerleading on behalf of an activism. That was not going to do anybody any good. If I was going to be useful, it was going to be by bringing my sociological expertise to bear in a way that would position me as having somewhat of a more independent position. I wasn’t entirely an outsider – I knew people who were AIDS activists and I went to demonstrations myself – but I was never fully an insider either. I wasn’t trying to study myself. I always wanted to maintain a certain amount of distance so that I could have different kinds of insights on the processes that I was describing.
Have you or would you ever be an active member or a leader of a social movement? If so, what social movement would you try to lead?
Although I have been involved in various activists group, I never tried to be a leader. Although I remained sympathetic to the activists, going to graduate school taught me that the questions that I was interested in pursuing were the ones that activism didn’t lend itself to. Activism encourages a pragmatic approach to knowledge – sometimes you need to take the positions that advance your arguments. I was somewhat uncomfortable with that – I wanted more of the freedom to pursue some intellectual questions, apart from the pressures that come from having to make immediate use of knowledge to advance a particular political position. In some sense, I didn’t feel that I was suited to be a leader of an activist movement. I felt that my contribution could come in a different way. In the book, Impure Science, I make a point in talking about the unintended consequences resulting from the activist engagement with science on the activism itself. For example, I describe how the engagement between HIV treatment activists and government health officials sometimes reinforced or accentuated the divides within various factions in the activist movement, especially between those who had access to more specialized knowledge and those who did not. I was making arguments that were sympathetic but also critical of the activists. I think that in order to be in a position to think those things through in a serious way, I had to be somewhat separate from being an activist myself. I wouldn’t try to lead one myself.
Where do you see yourself in the future? Would you still like to be a professor and continue your research?
I love what I do, and I love the opportunities that come to me from being a professor, the freedom to work on a wide range of topics, the opportunity to teach undergraduates and to train graduate students, the opportunities for travel that come with giving talks and going to conferences around the world. I love the different kinds of people and ideas that I’m routinely exposed to. All of this is invigorating and keeps me thinking and it hasn’t gotten old yet. I can see myself continuing to do that work for quite sometime. I am sure that the particular topics that I work on will change and sometimes the balance of activities shifts. In recent years I’ve done more administrative work, running the Science in Human Culture Program in past years, running the Sexualities Project at Northwestern (SPAN). I think as new opportunities arise, sometimes people shift the balance of what they are involved in, but these are things that I like and I’m happy doing.
How did you discover your passion for sociology of sexuality and LGBTQ studies?
In some ways this is a personal story. At the time that I was in graduate school in the late 1980s, there was very little work being done in the sociology of sexuality. As a gay person, I noticed that and felt like that was a real absence. Sociology seemed to have declared that a discipline that purported to study society and social beings didn’t really have to pay attention to something, sexuality, that most people would say is a pretty consequential aspect of their everyday lives and how society works. And that seemed to me just plain wrong and just plain crazy. If sexuality is such a fundamental aspect of what is on people’s minds and how the whole society is structured, then sexuality is something sociologists should take very seriously. I felt that it was important to put the sociology of sexuality on the map.
I definitely had an interest in promoting more research on LGBT issues. I have always been involved in activism on would just originally have been called gay and lesbian issues but what we now call LGBTQ. I have tried to bring attention to these issues in professional contexts as well. For example, the American Sociological Association has a Committee on the Status of LGBT People in Sociology, and I have served on that committee. I have also tried to take professional roles in ways that support LGBT rights within my field but also encourage scholars in my field to study issues related to LGBT people and sexuality in a more general context. Not only should there be people studying the sociology of sexuality, but there should also be people studying sexuality within other subfields – sociology of the state, economic sociology, sociology of political movements, sociology of the family: they should also be thinking about the sociology of sexuality because sexuality has implications in all those other social institutions.
How difficult is it to get access to information on pharmaceutical companies?
I found it quite difficult to get inside knowledge from the pharmaceutical industry. They tend to be very protective of their scientists. I have found it easier to interview prominent government officials than it is to interview pharmaceutical company scientists. The reason, I suppose, is that government officials recognize that they have a duty to be responsive to citizenry. Pharmaceutical companies have legal offices, which intervene. Several times, I’ve tried to interview pharmaceutical researchers about their work and they’re perfectly willing but they’ll say, “I have to run it by legal.” The answer I get back is that they prefer not. The lawyers tend to be risk-averse and they can’t see any particular benefit of having their employees talk to me, and they can only see potential risks. Unfortunately, I think they tend to classify researchers in the same category as journalists. Rather than recognizing the importance of our research, they see us more as pesky people trying to stir up problems. Sometimes I have had pharmaceutical scientists speak to me off the record and sometimes on the record. Sometimes, they just have not been allowed to talk to me by their companies. I think that is unfortunate because these are scientists who do interesting work, and it would be useful to know more about what they do and how they envision it. Of course, I am able to interview them after they have left their company, and sometimes they do speak in public venues or publish articles. It is an area of research that is a bit tricky for sociologists to undertake.
How do you get in contact with NIH associates, doctors and patients?
Every group that I interview, I interview them somewhat differently. The book Inclusion was not really a study of the patient’s perspectives. I interviewed representatives of patient advocacy groups who represent patients with particular diseases or patients of particular social categories. I also interviewed lawyers who sued on behalf of women who wanted access to clinical trials. I interviewed researchers conducting clinical trials on certain populations who were interested in studying the inclusion of women, racial minorities, and children in clinical trials. I interviewed people at the NIH, the CDC, various other places and usually I simply contacted them by email or phone and I explained to them what I was up to and asked if they could give me a little bit of their time. I am always impressed by their general willingness to do that and their kindness in making time for me. Very few people say no, or at least I’ve been lucky.
When you want to write a book, where do you begin and what’s the general process?
I love writing books because they provide you with a certain kind of freedom to expand on and develop ideas that are not afforded by journal articles as well as the ability to reach out a bit and talk to a more diverse audience. Writing a book is also hard and it takes a long time. It is an arduous process and for me, writing, which is the fun part, is what comes at the very end after gathering the data and figuring out what in the world it means. For me, writing a book has multiple stages and a lot of it involves a constant review of the data, figuring out what it seems to be telling me, connecting that to the existing literature, going back and reading more of the literature, going back and doing more thinking. All of that takes me a very inordinate amount of time. Once I have an outline of what I want to say I’m actually a pretty fast writer and I enjoy the craft of writing and the challenge of putting the words down on paper (or the screen, really) in a way that people will find clear, compelling and interesting. And then you rewrite!