Mention “records and documents of a large bureaucracy” and images of stacks of dense paperwork, rows of beige filing cabinets, and perhaps even a slight sensation of suffocation comes to mind. But mention the same phrase to Laura Stark and her pulse steps up a beat as she sees something quite different: buried treasure.
“I am interested in the power of bureaucracies and the discretion people within them have to interpret rules,” says Stark, assistant professor of science and society, assistant professor of sociology. “How people who work in big organizations, including government agencies, apply general rules to specific cases is hard work and often not intuitive at all. I also find the people who work in bureaucracies to be endlessly fascinating.”
Stark, who earned her Ph.D. in sociology from Princeton University, is interested in issues surrounding medicine, morality, and the modern state. Her first book, Behind Closed Doors: IRBs and the Making of Ethical Research, will be published by The University of Chicago Press next year. It explores how rules for the treatment of “human subjects” were formalized in the United States in the decades after World War II, and how these rules continue to play out within IRBs (Institutional Review Boards) today.
The work was in part informed by a recently-completed, two-year Stetten Fellowship at the National Institutes of Health’s (NIH) Office of History. It was there that she gained access to information on how the NIH’s IRBs evolved from the immediate post-World War II era to the present.
“The Stetten Fellowship was amazing because my desk was right at the site where so many of these medical studies, and the deliberations surrounding them, took place,” Stark says. “I was able to research archived documents and gained access to documents that were not formally archived. I was also able to talk with people at NIH, which helped give clarity to some of what I was finding and raised other scholarly questions .”
All of Stark’s research at NIH had to be done with adherence to privacy laws and was subject to a variety of approval processes. However, within those constraints she was allowed to live a researcher’s dream: liberal access to documents directly from the source of her primary area of study.
“I was only limited by what was legal and what I was willing to ask for, but it was really fruitful,” Stark says. “I could look at the modes of communications in consent forms, correspondence between researchers and participants, even expense reports and travel documents. It was amazing”
Some of the documents she examined detailed a little known NIH program that involved virus studies on more than 1,000 federal prisoners who were brought to NIH facilities. Among her findings was that review boards and procedures helped to gloss over, if not completely obscure, public awareness of such experiments, not just on prisoners but also conscientious objectors, unemployed volunteers, and students.
The review boards were also structured in such a way as to override dissent on components of the studies by participating scientists and physicians. The legacy of those boards lives on today in a modified, but still flawed review board structure that the federal government now mandates in local review-board regulations.
Stark discussed these findings, as well as suggestions for amending the vestiges of the process, in a recent OpEd in The Los Angeles Times.
While many of her other findings may not have been as dramatic, Stark said the research did yield several nuggets of “gold” that presented concrete evidence for hunches she’d had.
“For example, I had long suspected that prisoners were used for research but so many of the government documents euphemisms were used,” she says. “To find documented publicly-available proof that these convicts were in fact intentionally infected with pneumonia, influenza, simian-virus 40, among other viruses, was priceless from a research standpoint.”
Equally valuable were incidental details and descriptions that helped establish a historical context and vital elements of background on people involved with the boards, experiments and other goings-on at NIH. Stark says these “small amazements” gave the historical framing of the studies much more clarity.
“They had several small fires at the Clinical Center during the 1960s, mostly because the facility was jam-packed with over-heated scientific equipment and paper files,” she says. “And there were arrangements that would be frowned upon today, such as the study participants also working part-time for the researchers. They were doing everything from typing doctors’ correspondence to tending to lab animals. Finding out these kinds of details really gave me a sense of the experience.”
The stories of the people who participated in the studies will figure strongly into Stark’s next book project, tentatively titled Life of the Clinic. It will be a reconstruction of mid-20th century medical science from the perspective of people who were the objects of the studies. The book will combine what she has learned from bureaucratic documents along with oral histories and diaries and letters provided by study subjects.
Stark says she emphasizes written work and active research with her students. Last year she and members of one of her classes wrote an opinion piece on the Health Care Bill debate for Inside Higher Ed. She also includes her students in active research and guides them on their own original research.
“I feel so grateful to have these amazing students,” she says “It’s a part of my job that I really love.”
Stark is also co-leading the Wesleyan Digital Archive of Psychology with Jill Morawski, professor of science in society, professor of psychology, professor of feminist, gender and sexuality studies. The archive will serve as a repository for psychologists’ accounts of questionable research that occurred during the 1960s. The work is another example of Stark’s interest in searching through long-ignored forms and documents to find stories and case studies that can not only expose abuses of the past, but that can also help inform and improve health care procedures today.
“I am deeply interested in how people create ethics rules and how ideas about right and wrong can change. At the same time, I love the treasure hunt through old documents,” Stark says. “That’s one of the challenges that really motivates me. Finding these stories in these seemingly boring documents is a challenge. Bringing them to life is exciting. Many of them can help us as we work through our own approaches to the health care system today.”
More information on Laura Stark is in a past Wesleyan Connection article.