Sociologists -- especially those who study sexuality -- have for years done research that was considered controversial or troublesome by politicians or deans. Many scholars are proud of following their research ideas where they lead -- whatever others may think. But at a session Monday at the annual meeting of the American Sociological Association, sociologists considered the possibility that some of their colleagues may feel enough heat right now that they are avoiding certain topics or are being forced to compromise on either the language or substance of their research.
The problems come from a variety of sources, the scholars here said: from politicians, from institutional review boards on their own campuses, and from too narrow a definition of what "good science" may be.
One paper at the session featured what may be the most eye-catching title of the meeting: "Erections, Mounting and AIDS: Incestuous Gay Monkey Sex (or seven words you can't write in your NIH grant)." While the title drew laughter from the crowd here, the paper left many worried. Joanna Kempner, a research associate at the Princeton University Center for Health and Wellbeing, shared preliminary results of her study of the impact of having one's sexuality-related research attacked by politicians. (In fact, the words from her paper title comes from the way a conservative group described an NIH study. )
Kempner studied 162 researchers who in 2003 either had their research questioned by lawmakers who tried (and almost succeeded in the House of Representatives) to have their projects blocked for support from the NIH or whose work appeared on what became known as "the hit list" of projects for which the Traditional Values Coalition  tried to generate opposition. The research projects -- all of which had been approved through the peer review process at the NIH -- involved such topics as prostitution, gay sex, unsafe sexual acts, and drug use. Kempner interviewed some of the researchers and sent an e-mail survey to all of them.
While she is still analyzing the results, early findings suggest that the experience of being a target has led some of the scholars to rethink their work or careers. Generally, she found that scholars fell into three, roughly equal groups: those who were proud of their work and who viewed being a target as "a badge of honor," those who were scared and nervous about the future of their work and careers, and those who had a mix of reactions.
For those who had fears and concerns, there was a real impact on their subsequent decisions, Kempner said. Nearly half said that they took steps to either lower their profile or to change the language in their projects to disguise those qualities that would attract criticism. As one scholar told Kempner of the change, "I do not study sex workers. I study women at risk." About a quarter said that they had decided to seek funds from non-federal sources in the future, seeking to avoid controversy. This choice is significant, Kempner said, because the NIH is among the better sources of funds for large projects.
Smaller numbers reported more dramatic changes. Some said that they were just making different selections from among their potential projects. A researcher who had plans to study teenagers and anal sex or to study married heterosexual couples decided on the latter. One scholar left the United States. Another left academe. All in all, Kempner said that she saw real evidence of self-censorship in various forms.
Several in the audience said that the preliminary findings rang true to them, and noted that the impact may be greater on younger scholars, who have yet to win a first NIH grant, and who don't want controversy. One researcher in the audience described the e-mail messages that fly among social scientists advising one another on words to avoid and how to best describe topics that may raise a red flag.
Of course, NIH review panels are not the only ones that might be looking for a red flag. Mary L. Gray, an anthropologist at Indiana University at Bloomington, described her work in graduate school, which raised all kinds of red flags with her IRB at the time: She wanted to study the way gay, lesbian, bisexual and transgender youth develop their identities in the rural Southeast, and she wanted to base her research on interviews with such youth, under the age of 18, without their parents' knowledge. Her project, she said, "had every imaginable red flag."
With some regrets, she won IRB support by appealing to prejudice many have of the rural South. Although she had no evidence to make this claim, she argued that the situation in the rural South is "so awful" for the young people she was studying that she couldn't possibly approach their parents for consent. (Actually Gray believes that the situation for gay youth is more subtle and less uniform than she suggested, but she guessed it would work with the IRB, and it did.)
Because the IRB was -- like most IRB's -- oriented around medical research, not social science, the focus was on potential harm that Gray could cause her research subjects in person. Gray reported that she received relatively little questioning or guidance from her IRB on one of her major areas of research: what the young people she studied wrote about themselves online. Gray developed her own ethics rules (she wrote to the subjects to ask permission), but she was struck by what was and wasn't considered important by the IRB.
To the IRB, "distance read as objectivity" and so was by definition "good," she said. Never mind that what her subjects shared about themselves online was as important as the thoughts they shared in person. This points to Gray's broader critique of the IRB process. Social scientists frequently complain about IRB's failing to understand their studies, but Gray suggested it was time to move beyond the idea of just adding more social scientists to the panel. Rather, she said it was time to question certain underlying assumptions of IRB's and whether they even make sense for social science. It's not that Gray doesn't think there are ethical issues researchers must consider, but whether the medical model can ever work for projects that don't follow the pattern of having a hypothesis designed to lead to the dispassionate creation of generalizable knowledge.
Gray said that "IRB fatigue" is discouraging researchers -- especially graduate students -- from even trying to get projects approved.
Steven Epstein, a professor of sociology at the University of California at San Diego, said it was important to view the issues raised by both scholars in context. Congress didn't ban the projects as the Traditional Values Coalition requested, and many scholars like Gray manage to get IRB's to sign off on their work. It was important to remember, he said, that real work on sexuality is going on.
At the same time, he said that the question of people who put projects on hold is important. Epstein cited the work of Robert Proctor, a Stanford University historian of science, who studies "agnotology" -- the production of ignorance, or a field to contrast with epistemology. "What we are seeing is the construction of non-knowledge," Epstein said.
There are those who just move into other research areas. But Epstein also asked about those who leave certain words out of their projects' names or descriptions. "If you leave out the key words, people may not find your work," he said, and more non-knowledge may have been created.
While many of those criticized at the session are social conservatives, the speakers were careful to note that the issues they were raising did not fall neatly into a liberal/conservative divide. Kempner noted that some of the same problems of scientists avoiding certain topics have other sources. Two examples she cited were the way many social scientists are hesitant to do work on race and intelligence in the wake of the controversy over The Bell Curve, or the way many scientists avoid work that might make them the targets of animal research activists.
Epstein noted that one response to the conservative political attacks on sexuality research has been to rally around "the autonomy of science and peer review." Indeed the lobbyists and lawmakers who have fought off attempts to bar certain studies have focused almost exclusively on that argument, rather than defending the studies in question. Epstein said that there was "obvious strategic appeal" to this approach.
But he added that peer review "does not always get us Truth with a capital T."
He noted, for example, that many scholars who would jeer the Traditional Values Coalition for questioning peer review decisions cheered on AIDS activists who in the 1980s questioned why peer review teams were slow to put money into AIDS studies. Many scientists and activists today say that those activists -- and the breast cancer activists who followed them -- used citizen power effectively and to society's benefit to question scientific decision making.
Epstein said that he wasn't arguing that one "can't make distinctions" between the AIDS activists of one decade and the social conservatives of another, but the comparison should make one hesitate before relying on the "supposed virginal purity" of science to make all the decisions.
In his talk, Epstein also confessed to an inconsistency of his own. He generally endorsed Gray's criticism of the IRB process and the underlying ideology of the boards. But Epstein also said that when he was advising Gray on her dissertation, he urged her not to fight with the IRB and to look for ways to get the board members comfortable with her work.
It's not that he didn't believe she had legitimate gripes with the IRB, Epstein said, but he had yet another ethical obligation: to help a graduate student finish her dissertation and get her research and career launched.