Washington Monthly - September/October 2014 - 61

YOU CAN'T ASK THAT
Enacted a generation ago in response to real
abuses by some notorious medical researchers,
so-called institutional review boards have morphed
into entities that are stifling and distorting
important research throughout academia.
By Zachary M. Schrag

hat's the best way to help recovering female addicts stay clean when they get out of prison? A
good place to start researching that question
might be to talk with people who have been through the
experience. Or at least that's what Harvard graduate student Kimberly Sue thought when she set out to interview
female prisoners in Massachusetts with a history of opiate addiction.
But before Sue could even approach any of the women
she hoped to interview, she needed to get permission from
the Massachusetts Department of Public Health, the Department of Corrections, and, crucially, the Harvard Committee on the Use of Human Subjects, also known as an institutional review board, or IRB. And it was at Harvard that
she faced her greatest hurdles.
The Harvard IRB wanted to put all kinds of restrictions
on Sue's work. It didn't want her to talk to women who had
dealt with trauma or active mental illness. (That would have
excluded just about all the women in her study.) It wanted her to get her informants' signatures on written consent
forms with complex legal language that, as Sue soon discovered, the women were unable to understand. It fretted that
Sue would advise women to terminate pregnancies. And it
forbade her from observing women outside of such controlled spaces as hospitals and jails, as much for Sue's safety
as for that of the women she studied.
Much of this struck Sue as bizarre. She had worked in
tough neighborhoods before, in Durban, South Africa, as
well as North Philadelphia and Bedford-Stuyvesant, not to
mention local jails, so she knew what kinds of risks she was
facing. More importantly, she knew the women she wanted
to study, and what kinds of risks they were facing. While the
IRB feared that Sue's questions about drug use would spark
cravings in recovering addicts, the former addicts themselves knew that friends, family, and familiar places were
more likely to spark cravings than a question from a graduate student.

Sue was ready to acknowledge her ethical responsibilities as a researcher, but the IRB seemed detached from reality and left her feeling, she said, "alienated, oppositional,
and isolated." She was eventually able to win the approvals
she needed, but the experience was searing enough that she
subsequently wrote an essay in which she warned others
about the ways "IRBs can actually impede, slow down and
alter our research." Indeed, anyone who cares about universities' ability to study society and train researchers should
worry about the obstacles IRBs can impose.
IRBs exist at just about every university or hospital
that gets federal funding for research involving human beings, whether that means medical studies or just phone interviews. (The same rules do not apply to for-profit corporations, except drug companies.) The boards themselves

The university exists to
spread truth, yet the boards
insist on altering facts
in published accounts.
are composed of a mix of researchers, administrators, and
some members who are not affiliated with the institution
and do not conduct research themselves, but who are supposed to represent the voice of the community. Along with
the boards, larger institutions have IRB offices with staffing that can range from just three or four administrators
to dozens, with annual budgets easily exceeding $1 million.
Regardless of the number of administrators employed,
the IRB machinery exemplifies the way federal regulation
can combine with institutional self-preservation to hamper
a core mission of the university. The university exists to ask
questions, yet IRBs forbid some questions to be asked. The
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Washington Monthly - September/October 2014

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