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can’t
ask,
can’t
ask,
can’t ask,
how institutional review boards
Sexuality research has a history of controversy that long predates
the more recent institutionalization of human subjects review. In
the early 20th century, for example, obscenity disputes arose over
After
a month
of courtship
and nest-building,
two red-tailed
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sexuality
studies,
such as those
by British sexologist
Havelock
Ellis.
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emerged
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Unitedeggs
States
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the work of researchers such as Alfred C. Kinsey also triggered volathat red-tailed hawks are a common American species, the event
tile conflicts. In 1987, The Chronicle of Higher Education featured
would
seem
more than
a footnote
in the “Out
rites of
but this
an
article
onno
sexuality
researchers
entitled,
ofspring;
the Closet
Now
but Misunderstood.” As the headline suggests, social scientists and
nest happened to be on a 12th floor window ledge of NYU’s Bobst
historians described careers marked by marginalization and disLibrary,
overlooking
Washington
Square Park
Manhattan.
crimination.
Many had
been humiliated
byincolleagues
at public
academic events because of their research topics. Some kept their
research a secret from family members; others spoke of institutional
bias in promotion and funding.
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can’t
tell
can’t
tell
can’t tell
keep sex in the closet
More recently, new subfields within the social sciences and
humanities, as well as the emergence of interdisciplinary fields
such as sexuality studies and queer studies, have expanded
academic inquiry into sexuality. Sexuality researchers may be
“out of the closet now”—but not necessarily their work. Institutional Review Boards (IRBs)—federally-mandated but decenTRALIZED BUREAUCRACIES FOR ETHICAL REGULATION OF RESEARCHˆPLAY
A SIGNIlCANT BUT LARGELY UNNOTICED ROLE IN THE MARGINALIZATION
of sexuality research. In the sense that we understand “the
CLOSETv AS HIDDEN STIGMATIZED SEXUALITY )2"S KEEP SEX IN THE
closet. But while “the closet” refers to structures of oppression
applying to sexual minorities, the IRB closet obstructs a broad
production of sexual knowledge—not simply about identities and communities, but also about a range of sexual acts,
desires, and attitudes.
Despite myriad critiques of IRBs among social scientists
over the last decades, there is little discussion of the impact
IRBs have had on specific fields of research such as sexuality
studies. Sexuality has been a “special case” in the history of IRB
expansion over the social sciences, falling among a few topics
automatically deemed “sensitive” and therefore generally subject to enhanced scrutiny in IRB deliberations. Consequently,
IRBs operate as bureaucracies of sexuality simultaneously constraining sexual knowledge while reinforcing sexual stigma.
bureaucracies of sexuality
Ethical review has proceeded unevenly in the decades
SINCE .AZI EXPERIMENTATION TRIGGERED CONCERN ABOUT PROtection of human subjects. Biomedical abuses, such as the
by janice m. irvine
Tuskegee Syphilis Study (made public in 1972), led to Congressional passage of the National Research Act in 1974, and the
establishment of the National Commission for the Protection
of Human Subjects of Biomedical and Behavior Research. By
1979, the Commission published The Belmont Report: Ethical
Principles and Guidelines for the Protection of Human Subjects
of Research. Belmont’s three so-called pillars—respect for persons, beneficence, and justice—are the principles that guide
IRB reviews. Through the 1980s and mid-’90s, however, IRB
oversight of the social sciences and humanities was less sweeping than it would later become.
4HE LATE @S MARKED WHAT HISTORIAN :ACHARY 3CHRAG CALLS
“the crackdown” on the social sciences, when power over
research moved from researchers themselves to federal ethics regulators. The shift was striking, as qualitative researchers
in particular had been largely oblivious to IRBs. For example,
SOCIOLOGIST *ULIA %RICKSEN NOTED THAT WHEN SHE BEGAN RESEARCH
on sex surveys in the early 1990s, “There was no sense that I
had to go through something called an IRB. So I just contacted
people, did my interviews and kept the data thereafter.” All
that changed a few years later. Since 2000, the Department of
Health & Human Services Office of Human Subjects Research
(OHRP) has enforced Belmont’s principles through The Criteria for Institutional Review Board Approval of Research Involving Human Subjects. As Schrag notes, Belmont now has
“quasi-legal force.” Researchers must submit even unfunded
proposed work to an IRB for approval. Thousands of decentralIZED BUREAUCRACIES ACROSS THE COUNTRY NOW WEIGH THE POTENtial harm that might be inflicted by online surveys, interviews,
Contexts, 6OL .O PP )33. ELECTRONIC )33. © !MERICAN
Sociological Association. http://contexts.sagepub.com. DOI 10.1177/1536504212446457
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ethnographies, oral history projects, or focus groups.
We know little about how often IRBs block social research,
or how often IRBs demand that researchers substantially modIFY THEIR PROPOSALS 3OCIOLOGIST *ACK +ATZ WHO IS DOCUMENTING
cases of what he calls “IRB censorship” at U.S. universities, suggests that it may be impossible, based on anecdotal cases, to
determine “the iceberg of suppressed research plans from the
tips.” IRB horror stories circulate among sexuality researchers
but, until recently, there has been no systematic evidence on
the experiences of sociologists in this subfield.
To address this question, in the summer of 2011, I conducted a survey with members of the American Sociological Association Section on Sexualities. Using 80 questions,
I inquired about aspects of their academic careers, such as
graduate training, access to funding, promotion decisions, IRB
experiences, and potential controversies. The section is fairly
young, founded in 1997, with approximately 450 members at
the time of my survey. With a response rate approaching 40
percent, it is the only survey of its kind to examine the career
experiences of sociologists who study sexuality. The comments
in this article derive from this survey and from a number of
follow-up interviews.
Survey responses suggest ongoing dilemmas of stigma and
MARGINALIZATION WITH THE QUESTIONS ABOUT )2"S PROMPTING SOME
of the most impassioned responses. Of 155 respondents who
reported conducting research, 119 had submitted sexualityrelated projects to an Institutional Review Board. Of these, 52
sociologists—approximately 45 percent—report that they had
experienced difficulty getting IRB approval. IRB practices, accord-
and won’t approve. So they don’t even try to do certain kinds
of research because they assume that it won’t be approved.”
Restrictive IRB practices may disadvantage faculty for promotion or other career moves. One junior scholar noted: “It’s
made [my research] actually very difficult. I’m facing tenure
review right now and needing to explain, for example, why my
book’s not published yet. Well, I spent a year and a half getting
IRB [approval]. It’s definitely hindered my ability to do the actual
research and then write up the results, spending so much time
trying to get the approval, and then all of the torturous hurdles
they put in front of me as well makes it more difficult.” Another
said, “By and large, the IRB is the most difficult process and institution I encounter in my sexuality research. The word “sex” sets
off a set of red flags that can double or triple the amount of red
tape I have to go through to get approval for my research.” IRBs
can shape a field of knowledge and discourage researchers, simply through following their bureaucratic procedures.
sex & sensitivity
Cultural anxieties about sex may disadvantage research
projects that pertain to sexuality. IRB history reveals early fears
about the danger that sexuality allegedly posed in research. For
EXAMPLE *AMES 3HANNON DIRECTOR OF THE .ATIONAL )NSTITUTES FOR
Health in the 1960s, told an interviewer in 1971, “It’s not the
scientist who puts a needle in the bloodstream who causes the
trouble. It’s the behavioral scientist who probes into the sex
life of an insecure person who really raises hell.” Shannon was
probably referring to the research scandal after the publication
of sociologist Laud Humphreys’s 1970 book about sex between
men in public places, Tearoom Trade. The
book was referenced regularly in deliberations by the National Commission during
1977-78 as they began developing their
formal recommendations for the protection of human subjects.
:ACHARY 3CHRAG TOLD ME h)T BECAME A KIND OF SHORTHAND FOR THE
perils of interview research, rather than something that was
investigated in any depth, the way that the Commission did,
say, go out to prisons to talk with prisoners about their participation in medical experimentation.”
Humphreys was never invited to a Commission meeting to
discuss his research methods, nor did the Commissioners specify which of his methods they considered unethical. Although
other social researchers at that time had used deception, for
example posing as patients at hospitals or attending Alcoholics
Anonymous meetings, no studies other than Tearoom Trade
were discussed by the Commission. Of course, none of these
studies had generated the controversy that Tearoom Trade
did, a development likely not unrelated to his research topic.
As sociologist Earl Babbie notes, “Only adding the sacrifice of
Christian babies could have made this more inflammatory for
the great majority of Americans in 1970.”
In later regulatory deliberations, sexuality was typically
IRBs exert a chilling effect on sexuality research.
ing to these researchers, had either slowed down or discouraged
their research. Moreover, 41 percent report that other sexuality
researchers at their university had also had IRB difficulties.
a chilling effect
Many responses suggest that IRBs may exert a chilling
effect on sexuality research. Some researchers simply give up.
As one sociologist noted, “I am less likely to do research on
alternative sexualities.” Twenty-six percent of faculty in my survey reported that their students had experienced trouble getting IRB approval for sexuality projects. One said, “A student
who wanted to use letters written by queer prisoners had a
difficult time getting approval. After the third try, he changed
topics.” Some professors warned students away entirely. As
one noted, “I have tended to discourage students from trying
to investigate topics of youth sexuality, generally telling them
that it will be hard to get past IRB.” In some cases students
censor themselves. One professor said, “I think that what happens is that graduate students have a sense of what the IRB will
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clustered with “deviance”: criminal behavior, substance use, and
mental illness. In the late seventies, as health officials debated the
level of risk posed by surveys and observation, a federal official
proposed that all survey research be excluded from regulation
if it did “not deal with sensitive topics, such as sexual behavior,
drug or alcohol abuse, illegal conduct, or family planning.” Regulations in 1981 specified that social research be exempted from
IRB review unless it “deals with sensitive aspects of the subject’s
own behavior, such as illegal conduct, drug use, sexual behavior,
or use of alcohol.” So while earlier regulators were willing to
exempt most social science research, sexuality fell outside these
boundaries. My survey responses suggest that many IRBs still
assume that sexuality research is “sensitive.”
Additionally, IRBs may treat the researchers themselves as
suspect because of their interest in sexuality. Sociologist Laura
Stark found that one key aspect of IRB decision-making was
the members’ assessment of the researcher. They read proposals “like tea leaves for signs of good character.” This strategy,
unfortunately, disadvantages sexuality researchers, who have
HISTORICALLY BEEN VULNERABLE TO MISCHARACTERIZATIONS SUCH AS
hPERVERTv hPEDOPHILEv AND hSEXCRAZEDv -ANY RESPONDENTS
IN MY SURVEY REPORTED SUCH STIGMATIZING EXPERIENCES /NE SAID
“No one at my university will even talk about the work. They
seem to think it’s shameful.” Another said, “I’ve been called
‘obsessed with sex’ in a derogatory and judgmental manner.”
As Stark notes, group process in IRB meetings can elicit both
the strengths as well as “the most unsavory biases” of individual members. It would not be surprising, given broader culTURAL SUSPICION ABOUT SEX IF SOME BOARD MEMBERS GAZED WITH
mistrust upon sexuality researchers.
risk and vulnerability
Two ambiguous but powerful concepts routinely trouble
contemporary IRB deliberations on sexuality research: risk and
vulnerability. Both connote danger. Regulations require that
hRISKS TO SUBJECTS ARE MINIMIZEDv h2ISKv HOWEVER IS NOT
Wired
A series of photographs by Sarah Sudhoff. This series documents sexual devices from the Kinsey Institute for Research in Sex,
Gender, and Reproduction, most of which are currently used in psychophysiological research.
A.
C.
D.
E.
B.
A. Male Vibrator I, 2011. Used in an ongoing project involving over 100 men. B. Vaginal Photoplethysmograph II, 2011. Measured
vaginal blood flow indicating the level of sexual arousal in women. (Not in current use.) C. Biothesiometer, 2011. Used in ongoing
study to measure penile sensitivity to vibration. D. Oval Calibration Device, 2011. Device calibrates instruments used to measure
penile circumference. E. Vaginal Photoplethysmograph III, 2011. Measures vaginal blood flow indicating the level of sexual
arousal in women.
SPRING 2012
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defined beyond “harm or discomfort.” Likewise, the term “vulnerable populations” is defined only through examples: “The
IRB must be particularly attentive to the special problems that
may arise when research involves vulnerable populations, such
as children, pregnant women, prisoners, mentally disabled
persons, or economically or educationally disadvantaged persons.” Such safeguards, which make sense for biomedicine,
are easily misapplied in social science research, where IRB members may be influenced by cultural anxieties or personal bias
when interpreting vague terms like “risk.”
Belmont’s “respect for persons” principle has two prongs:
individuals should be treated as autonomous agents; and individuals of diminished autonomy should be protected. Many of
the decisions reported by respondents to my survey equate vulnerability to social discrimination with diminished autonomy.
Under the guise of protection, IRBs exclude sexual minorities
from research and deny them a voice which, as my respondents
wrote that because DADT prohibits military personnel from
disclosing their homosexuality, “the Committee considered the
risks to subjects too great and could not grant approval of the
STUDYv $ENIED SEXUAL CITIZENSHIP BY FEDERAL MILITARY POLICY AND
thereby made “vulnerable,” lesbian and gay soldiers were then
denied opportunity by the IRB to exercise political agency and
speak out, even anonymously.
Sometimes IRBs view projects as too risky because they
consider the researcher to be vulnerable. In these cases, the
research subjects are deemed dangerous, typically because of
non-normative identities or behaviors. For example, sociologist
Elisabeth Scheff of Georgia State University proposed a study
of people who identify as kinky. IRB approval “took just a hideously long time. They said that I couldn’t go to respondents’
homes to interview them. That it wasn’t safe. These people,
who knew what they would do, if they were going to engage
in kinky sex, maybe they would kidnap and torture me. And I
was like, ‘it doesn’t really work that way.’ I
had to agree to meet people in my office,
a public library, cafés.” She found that
the prohibition to go to her respondents’
homes interfered with her ability to recruit
subjects and conduct private interviews. In some cases when
IRBs see the sexual subject as the source of risk, their decisions
seem designed to protect the university: “My student was
doing interviews with sex workers. The IRB expressed concern
that this population was dangerous. They seemed scared that
putting the university name on the flier would invite sex workers to campus.”
IRBs turn us all into “outlaws” and “low-level
cheaters.”
note, actually reinforces hierarchies: “The process reproduces
inequality, for example: it’s not okay to ask someone about
their sexuality if they are presumed to be LGBTQ, but it is okay
if they are presumed to identify as heterosexual.” Also while
many IRBs automatically view sexuality research as risky, they
differ in where they locate it.
Often, it is the sexual subjects themselves whom IRBs
consider too vulnerable to speak. Some of these cases involve
children or adolescents, an explicitly protected category in IRB
regulations. For this reason, sexuality researchers tend to avoid
such projects (“In general, my students are leery of studying
sexuality because of perceived problems with IRB, especially
studying child and youth sexuality”). In an alarming twist,
however, my respondents reported that IRBs routinely blocked
research on adult sexual minorities, particularly LGBTQ communities, because of their alleged vulnerability. For instance, one
respondent noted, “Demographic surveys could not include
any identifying information. I was told that because the information I was collecting was “sensitive” (life histories of black
gay men), this would prevent the unanticipated “outing” of
participants. Somehow the sexual identity of my participants
was construed as clandestine and shameful.”
Another respondent reports, “They made me change
the reporting of names to be completely anonymous even
though almost all of my subjects WANTED to be identified
IN THE STUDYˆIT WAS A 0RIDE ORGANIZATION WHOSE ENTIRE GOAL
was about being out and proud!!” My own student, Shawn,
became the only researcher in our department to have his proposal rejected by the university IRB. His proposed study was
to explore the impact of the military policy, Don’t Ask, Don’t
Tell (DADT) on the day-to-day lives of gay servicemen. The IRB
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a dangerous method?
Critics have observed IRB “mission creep,” as a new
industry of IRB professionals, often having little or no research
experience themselves, review proposals. One outcome has
been requirements for design modifications. For example,
many survey respondents reported that IRBs required them
to incorporate therapeutic provisions in the event that participants became overwrought while talking about sexuality. As
one professor notes, “My student was told that GLBTQ people
are mentally vulnerable and that he would need to provide
counseling if one of them caved in sharing his or her coming out story.” Another reports, “This was about fear [by the
IRB] that teenagers would be upset in a focus group interview,
and requiring a counselor be ‘on hand’ in case they were. The
school chose not to participate under this condition.”
IRBs may also require researchers to change their theoretical framework or methodological strategies. My respondents
reported demands that certain questions be expunged from
surveys and interview schedules, or protocol requirements that
impeded the project. Reports such as the following were typical, “The IRB would not allow me to conduct traditional snowball sampling of women who are consultants for at-home sex
toy parties, despite the fact that my participants run successful
businesses selling sex toys/sexual aids and they often advertise
their businesses in public places.” Or, “They objected to asking questions about sex life. Basically the IRB wanted nothing
to do with an ethnographic investigation of gender and sexuality among high school students. [My proposal was held] to
a higher standard, initially arguing that I would need to get
permission from every parent in the high school to conduct
an ethnography, not just the principal’s permission (which was
suitable for all the other projects, apparently).”
IRB reviews may even object to the commonly used
language. One respondent reports, “One of the significant
changes I had to make to my IRB application was removing
the word ‘queer’ from my title and all recruiting materials. The
IRB felt that it would be potentially offensive. This seriously
hinders my ability to recruit queer-identified women, many of
whom specifically don’t identify as lesbians.” In the end, these
IRB practices may turn sexuality researchers into “outlaws” and
“low-level cheaters,” as they bargain, omit information, and,
finally, ignore impossible demands.
Another pernicious IRB requirement is that researchers
must destroy their data. This practice prevents longitudinal
research, historical comparisons, and the vital accumulation
of knowledge. My respondents report requirements to either
destroy or never collect identifying information on their interviewees, under the guise of protecting confidentiality. Scheff,
for example, submitted a proposal on polyamory as a graduate student: “They were very nervous about me studying adult
polyamorists.” The IRB approved her study as long as she
instructed her respondents to sign consent forms using pseudonyms (“Mary,” for example) and did not collect identifying
names with pseudonyms. Later Scheff found that longitudinal
follow-up was impossible. “Naively, I thought, ‘Oh well, I’ll just
remember.’ Well, fifteen years later, I can’t remember who
‘Mary’ was.” The IRB made her destroy her interview tapes.
She has the transcripts but “that doesn’t help me find people
for longitudinal research. Really, if you’re going to resample
the original sample, you need to know who the initial sample
was.” Because of these IRB requirements, Scheff could not
locate members of her original sample.
2EGARDING HER RESEARCH ON BREAST CANCER *ULIA %RICKSEN
notes that her IRB was concerned that “it was about breasts
and about sex.” They required that she destroy all of her
data—tapes and transcripts of 98 interviews. Ericksen said, “I
had marvelous data in them. Even though people will again
interview women who had breast cancer, they won’t interview
women at that particular moment in time.” IRB requirements
for data destruction not only make longitudinal work impossible, but prevent archiving interviews for future scholars. “It
would have been very interesting for somebody 50 years from
now, to go back and say, hypothetically, ‘Now we know how
to cure breast cancer, and we have this historical material from
people from when they didn’t know.’”
Cumulatively, these findings suggest that boards may
apply tropes of danger and risk to projects involving sexuality.
But is talking about sex to a researcher harmful, and if so, how
harmful? IRB regulations allow expedited or exempt review for
research estimated as “minimal risk,” defined as not exceeding
harm normally encountered in daily life. Anecdotal evidence,
dating back to Kinsey’s respondents, suggests that many interviewees may even enjoy participating in sexuality research.
!S *ULIA %RICKSEN NOTED h)2" MEMBERS ASSUME PEOPLE DONT
want to talk about these things and that was not my experience.” Not surprisingly, we have little empirical data. In 1977,
two years before Belmont’s publication, psychologist Paul
Abramson conducted an impact experiment on 80 undergraduates. His procedure—designed to replicate protocols of that
era—involved deception, soft pornography in a waiting room,
and tests to measure sexual orientation. He found that subjects
enjoyed the research and reported no negative aftereffects.
More recently, health researcher Brian Mustanski found that
90 percent of adolescent participants in an LGBT health study
reported that they were “very comfortable” or “comfortable”
answering questions about sexuality, and he urged researchers
not to let IRBs discourage them from sexuality research with
adolescents. Ironically, IRBs might well block further research of
this type that could inform their deliberations.
Ironies abound in IRB regulation of sexuality research. IRBs
KEEP SEX IN THE CLOSET WHILE THEMSELVES OPERATING IN WHAT +ATZ
calls a “miasma of discretion,” with virtually no public oversight or transparency to the researchers they regulate. IRBs that
assume sexuality is “sensitive” prohibit the very research that
might demonstrate that, for many, it is not. IRBs that presume
sexuality is “risky,” prohibit the production of sexual knowledge and silence the voices of diverse sexualities—knowledge
which might itself challenge cultural fears about sex. IRB practices that disadvantage sexuality research have the effect of
wresting sex out of politics and history and denying the possibility of social change. Timeless and taboo, sex remains outside
of what is knowable.
Janice M. Irvine is in the department of sociology at the University of Massachusetts. She is the author of Talk About Sex: The Battles Over Sex Education in the
United States.
recommended resources
#HILDRESS *AMES %RIC -ESLIN AND (AROLD 3HAPIRO EDS Belmont
Revisited: Ethical Principles for Research with Human Subjects
(Georgetown University Press, 2005). Examines the findings of the
original Belmont Report, with insider perspectives as well as critiques.
3CHRAG :ACHARY Ethical Imperialism: Institutional Review Boards
and the Social Sciences, 1965-2009 *OHNS (OPKINS 0RESS Documents the emergence and expansion of federal regulation
over social science and humanities research.
Stark, Laura. Behind Closed Doors: IRBs and the Making of Ethical
Research (University of Chicago Press, 2012). Draws on firsthand
observation and historical material to explain how IRBs make decisions.
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