Human Subjects Review Boards gone mad?

Link: As Ethics Panels Expand Grip, No Field Is Off Limits:Colleges and Universities - Institutional Review Boards - Ethics - New York Times.

I ran into this kind of ridiculousness in grad school as well. The thing is, my study was massively attentive to research ethics, and I went far beyond whatever ethical requirements a review board might make, because the theoretical frame of my study took a strong position against the exploitation that comes with colonialist thinking, even with scholarly "territories."

But even so, I ducked out on the Human Subjects review with one quick trick. It may not have been the best solution, and, as the absurd issues pointed up in the article below highlight, the Review Board probably could have still taken an insanity pill and come after me.

Basically, even though I was technically conducting an ethnography in cyberspace, I chose to ONLY collect texts that would have otherwise existed in the public domain, a linguistic fiction that worked because communication in cyberspace domains is a hybrid of both published texts and live communication.

The article below accurately points out, such restrictions certainly limit the kinds of findings that can come from any research. To my end, I still did "informal" research, and just removed it from any connection to my formal data-gathering process, through forming personal and private relationships in the group I was studying, but keeping them out of the study. But they surely did inform my larger breadth of knowledge on my subject.

Another reason why this is just nuts occurred to me when working back in the field of journalism the last five years.

Since the journalistic enterprise is not constructed as formal "research," journalists can do many more things to gather information from human subjects than academic researchers can. How does this affect how knowledge is made, how truths are constructed, when academic censorship becomes a major influence in the social construction of that knowledge?

Journalists operate with a Jeffersonian epistemology of sorts, where the supposedly free flow of ideas helps them arrive at the best-guess contingent truths. Yet, by default, because academics stay in their disciplinary walled gardens and rarely participate in public knowledge-making as public intellectuals, the journalistic research methods construct more of our common truths than anything else, simply because academics have ceded the Commons to them.

Meanwhile, Human Subjects Review Boards seem to have morphed into Cotton Mather and the good folk of Salem, Massachusetts, seeing evil lurking in every nuance and human interaction, every specter, every hint of a specter.

And do you know why? It's because I've been coming into their homes in the night, during their dreams, and pinching them, over and over. Pinch, pinch.

Link: As Ethics Panels Expand Grip, No Field Is Off Limits:Colleges and Universities - Institutional Review Boards - Ethics - New York Times.

As Ethics Panels Expand Grip, No Field Is Off Limits

By PATRICIA COHEN

Published: February 28, 2007

Ever since the gross mistreatment of poor black men in the Tuskegee Syphilis Study came to light three decades ago, the federal government has required ethics panels to protect people from being used as human lab rats in biomedical studies. Yet now, faculty and graduate students across the country increasingly complain that these panels have spun out of control, curtailing academic freedom and interfering with research in history, English and other subjects that poses virtually no danger to anyone. 

Photo by Marko Georgiev for The New York Times

Bernadette McCauley, a historian who was temporarily banned by an ethics panel from doing any research.

The panels, known as Institutional Review Boards, are required at all institutions that receive research money from any one of 17 federal agencies and are charged with signing off in advance on almost all studies that involve a living person, whether a former president of the United States or your own grandmother. This results, critics say, in unnecessary and sometimes absurd demands.

Among the incidents cited in recent report by the American Association of University Professors are a review board asking a linguist studying a preliterate tribe to “have the subjects read and sign a consent form,” and a board forbidding a white student studying ethnicity to interview African-American Ph.D. students “because it might be traumatic for them.”

“It drives historians crazy,” said Joshua Freeman, the director of the City University’s graduate history program. “It’s a medical model, it’s inappropriate and ignorant.” One student currently waiting for a board to approve his study of a strike in the 1970s, Mr. Freeman said, had to submit a list of questions he was going to ask workers and union officials, file signed consent forms, describe the locked location where he would keep all his notes, take a test to certify he understood the standards.

Review boards, first created in 1974, were initially restricted to biomedical research. In 1981 the regulations were revised to cover all research that involves “human subjects” and is designed to contribute to “generalizable knowledge.”

Yet precisely how to interpret these rules has largely been left to each review board — 5,564 in all. And while the regulations apply specifically to research that gets federal dollars, many colleges use Institutional Review Boards to monitor all research, no matter where the funds come from. This system of helter-skelter enforcement, critics say, has no meaningful oversight and no appeal process.

[...]

But to many faculty and graduate students, review boards are like a blister that gets worse with every step. Those outside of the hard sciences say the legitimate concerns over ethics and safety are largely irrelevant to most of their research.

According to a stack of reports, symposiums and studies by academic associations and scholars, the system’s “mission creep” is having a pernicious and widespread effect on humanities and social science research. Legal scholars also argue the boards violate the First Amendment.

The growing number of complaints in recent years apparently stems from an overall crackdown after a series of medical-research blunders beginning with the death of an 18-year-old in a gene-therapy trial at the University of Pennsylvania in 1999.

[...]

In the past year, discussions about what some call the “I.R.B. wars” have sprung up in specialty publications like The Chronicle of Higher Education, conferences, scholarly journals and blogs. Although research proposals are rarely rejected, scholars argue that the requested changes in the wording of questions and consent forms can alter the nature of the study and scare off participants.

Bernadette McCauley, a historian at Hunter College, said she ran into trouble a couple of years ago when she tried to help students working with the Museum of the City of New York on an exhibition about Washington Heights. She asked if a few nuns who had grown up in that neighborhood and whom she knew from her research would talk to the students. And that, Ms. McCauley said, was “when things went haywire.”

The review board discovered the request and lambasted Ms. McCauley for failing to consult with it, she said. The board also demanded proof that previous research for a completed book did not use any archival material involving living people and banned her from doing any research.

Michael Arena, the director of communications at City University, said in an e-mail message that Ms. McCauley initially refused to send in a “brief description” of her research so that board members could determine whether federal regulations covered her work. Ms. McCauley hired a lawyer and after six months of negotiations, the board agreed that her research was exempt.

[...]

Ms. Dougherty, an associate professor of communications at Missouri, said review boards were needed because “historically, social science has done things abhorrent to human subjects.” Unfortunately the current process “obliterates a lot of research,” she said, because untenured faculty and graduate students on a timetable cannot afford to spend months waiting for approval. So, for example, “instead of talking to people who are victims of violence, you might look at newspaper articles,” she said, echoing a common complaint that the requirements cause academics to steer clear of controversial topics. Research decisions “should be guided by science,” she said, “not whether or not it’s going to get through the board.”

Ms. Dougherty said she was willing to speak openly, unlike many graduate students and faculty, because she had tenure.

[...]

Mr. Schwetz said there was no chance that some subjects like oral history and journalism would be altogether excluded from review, as some academic organizations have urged. “If we were just to say, ‘Assume you don’t have to take them before an I.R.B.,’ I think we would regret that,” he said. But he said the new guidelines “will give a lot of examples and will give more guidance on how to make the decision on what is research and what is not.”

Some critics fault the universities, placing blame either with overzealous panels or with university administrations that have not done enough to differentiate between research that receives federal money and research that does not.

Mr. Freeman of City University said that within the humanities “most faculty members don’t know these rules exist.” He added, “If they in fact followed these rules, the whole I.R.B. system would grind to a halt.”