RE: [xmca] NYTimes article on ethics panels controlling research

From: Jennifer DeWitt (jennifer.dewitt@kcl.ac.uk)
Date: Wed Feb 28 2007 - 16:24:42 PST


I was a grad student in psychology at UCLA in the
early 1990s, and part of the reason I left before
completing the dissertation was because of the
IRB process. In my research, I planned to have
children (ages 4-6 or so -- it's been a while, so
I forget exactly) choose between several
explanations for biological processes (such as
how blue-eyed parents might have blue -- or brown
-- eyed children.) Because some of the
explanations from which children could choose
would have been incorrect from a scientific
viewpoint ('little bits of blue stuff go from the
mommy to the baby'), a fellow student swore that
he would raise a stink with the IRB board -- 'by
presenting a statement that isn't scientifically
correct to a child -- by simply saying the words,
even if it's one among several choices, you could
confuse them forever, cause them to fail exams in
the future, and do incredible damage to both
their understanding of biology and to their
standardized test scores'. It did seem a bit
much, given that kids are constantly exposed to
things that aren't entirely correct from a
scientific viewpoint. But it was a big reason why
I left -- because there was no way I could do the
research I wanted to do without 'exposing'
children to information that wasn't entirely
accurate. (Mind you, as it was a choice among
several explanations, I was not trying to
convince them that something incorrect was
correct. And standardized tests often have
choices that are not correct -- that's kind of
the point. But that was insufficient for the
review board, or so I was told.)

I firmly belive protecting children -- and their
families, teachers, etc -- is critical. But it
does seem to have gone a bit overboard. But
perhaps I'm just not sensitive enough to their
concerns.

>I find the article extremely interesting, and as
>a graduate student completing my dissertation, I
>would love to hear (read) the reactions of
>seasoned researchers to it.
>
>I, personally, have gone through a fair amount
>of agonizing about organizing my studies in such
>a way as not to violate any IRB regulations, but
>I also found the non-medical/biological IRB at
>UCLA to be very understanding of anthropological
>and sociological research approaches to research.
>
>Olga
>
>-----Original Message-----
>From: xmca-bounces@weber.ucsd.edu on behalf of sgabosch@comcast.net
>Sent: Wed 2/28/2007 7:43 AM
>To: eXtended Mind, Culture, Activity
>Subject: [xmca] NYTimes article on ethics panels controlling research
>
>
>New York Times
>February 28, 2007
>As Ethics Panels Expand Grip, No Field Is Off Limits
>By PATRICIA COHEN
>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.
>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.
>Debbie S. Dougherty and Michael W. Kramer, two
>former members of a review board at the
>University of Missouri, Columbia, who wanted to
>study review boards, had to first get their own
>board's O.K. Although they thought their project
>was exempt from board approval, the only entity
>authorized to make that decision is the board
>itself, and the only appeal if the researchers
>had rejected the ruling is also the board.
>Bernard A. Schwetz, director of the federal
>Office for Human Research Protections, which
>administers the regulations, acknowledges that
>the guidelines covering the boards' actions have
>not been clear enough and says he intends to
>make public new proposed guidelines before the
>end of the year. Still, he said the priority is
>to protect human subjects and dismissed the
>notion that most nonmedical research carries few
>dangers. "Obviously the balance is very subtle,"
>he said. "I think it's na´ve to say there isn't
>any risk."
>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.
>A board is required to have a minimum of five
>members, including one nonscientist and one
>person unaffiliated with the institution, said
>Pat El-Hinnawy, spokeswoman for the Office for
>Human Research Protections. Larger universities
>often have several boards. Members are generally
>appointed for limited terms.
>When Robert L. Johnson, the review board
>administrator for Appalachian State University,
>talks to students, he said he starts off by
>asking, "If you were going to participate in a
>study, what are the things you would like to
>know?"
>The usual responses, he said, are: What are you
>doing? Will you use my name? Who's responsible
>if I get hurt? What's in it for me? Making sure
>those questions get answered, said Mr. Johnson,
>"that's the purpose of the I.R.B."
>Mr. Johnson said his board met monthly and
>reviewed approximately 200 projects a year; most
>are routine, require what he called minor
>changes and get approved within two weeks. About
>30 to 40 require full board review, which takes
>at least six weeks.
>Timothy Wilson, a social psychologist at the
>University of Virginia, now in his second term
>as a member of Virginia's nonmedical review
>board, said that "I.R.B.'s naturally become
>cautious," but that given the constraints, "I
>think our board works extremely well."
>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.
>Professors also say that some board directives,
>like destroying interview recordings and notes
>after publication to ensure confidentiality,
>violate accepted scholarly practices. "There
>probably will be litigation," predicted Philip
>Hamburger, a professor at Columbia Law School
>who argues that prior approval violates the
>First Amendment. "There are potentially hundreds
>of thousands of plaintiffs."
>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."
><end>
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