Wednesday, December 9, 2015

Protecting He-Man Subjects

After frustrating encounters with IRBs concerning two research projects, sociologists Liberty Walther Barnes and Christin L. Munsch argue that “IRBs are gendered institutions in which members base their decisions on culturally dominant, normative images of women and men.”

[Liberty Walther Barnes and Christin L. Munsch, “The Paradoxical Privilege of Men and Masculinity in Institutional Review Boards,” Feminist Studies 41, no. 3 (2015): 594–622, doi:10.15767/feministstudies.41.3.594.]

Barnes and Munsch set out to study men, not ethics reviewers. But, they report, their “research programs were perceived by IRBs to expose men’s private failures, personal feelings, and vulnerabilities. By proposing such topics, we inadvertently conducted an ethno-methodological study of IRBs,” with each IRB letter revealing the assumptions and anxieties of the members and staff of the eight IRBs to whom they submitted protocols.

Boys Don't Cry

Barnes wanted to understand the experience of male infertility through participant observation and interviews with members of an infertility education and advocacy organization. Similar work about women had flown through IRBs, but not this study, in large part because the IRB was worried that the men might cry during the interviews.

During a telephone conversation with one IRB analyst, the first author learned that what she had initially listed as a study benefit—the opportunity for men to share their feelings about infertility—the IRB perceived as a risk. Per the analyst’s instructions, the informed consent forms were revised to read: “Should you feel uncomfortable for any reason, I will immediately stop the interview. You will have the option to terminate the interview, and/or have any particular answer expunged from the record.” This is fairly common verbiage for IRB consent forms. Additionally, however, the analyst advised the researcher to include instructions for managing discomfort, which should entail stopping the interview if a man began to cry, allowing him to regain composure, and then asking him if he would like to terminate the interview or continue. Later, after expanding the study to include five hospital clinics, an IRB analyst at one hospital amended the consent form to read: “The risks of the study may include loss of confidentiality, or feeling uncomfortable or embarrassed. There is a risk that some of the questions may make you feel emotional and may make you cry.”

Giving notice about what may or may not occur, stopping interviews, and giving subjects the opportunity to recant statements were required protocol steps intended to demonstrate respect for subjects’ emotions and privacy. However, such attempts at “managing discomfort” simultaneously signaled to participants that they needed to manage their emotional expressions. By listing “feeling emotional” and “crying” as explicit risks of participation, the consent form conveyed to participants that these behaviors are undesirable and should be avoided. Asking upset participants if they wished to terminate the interview also served to socialize men to control their emotions and suggested that they should feel ashamed when they fail to do so. Such modifications perpetuate the norm that men should maintain composure; additionally, they illuminate the implicit norm that others share in the social responsibility of preventing men from humiliating themselves in front of others by sharing tender feelings. Incidentally, this requisite prescription for managing discomfort biased the data: the goal of the proposed research was to better understand how men emotionally and cognitively process their infertility, but the IRB restricted which emotions could be expressed by participants.

Barnes soldiered on, achieving an 80 percent response rate. Moreover,

many men expressed gratitude for the opportunity to participate. No participants withdrew from the study or requested to have their data expunged from the record. Most participants were very genuine and forthcoming about their medical experiences. In fact, many participants felt reassured to learn they were not the “only guy” struggling with infertility. On two occasions, in accordance with the revised research protocol, the investigator stopped interviews because respondents began to cry. Both men requested that the interview continue: they had more they wanted to share.

Doctors Aren't Human

In addition to interviewing patients, Barnes wanted to “shadow urologists specializing in male infertility and observe their interactions with patients.” Here, again, the IRBs rode to the defense of privilege.

When the first author [Barnes] listed medical doctors as research subjects on applications to the biomedical IRB committees, she was repeatedly informed that “Doctors cannot be research subjects.” In fact, IRB analysts explicitly stated that they could not imagine a circumstance in which a medical doctor could be a human research subject, nor did they believe one could study culture through ethnographic research in US hospitals. Consequently, in order to gain access to her field sites, the investigator was required to list the doctors she shadowed as the Principal Investigators of her study and herself as the Co-Principal Investigator. She was also required to remove any part of the research protocol that said she would observe or interview the male-infertility specialists she shadowed during the study, a group of prominently white, upperclass, middle-aged men. The doctors’ protected status as lead researcher meant that she could not claim to critically evaluate what she observed or heard from them. She was effectively directed by IRBs not to examine clinical practices as cultural practices, but to accept clinical practices and doctors’ actions and interactions as the indisputable normative standard for medical care and as scientific practices uninfluenced by culture. Medical doctors’ elevated status above the critical lens of social scientists demonstrates how biomedical IRBs operate to protect masculine institutions and authorities.

Girlie Men Got No Reason to Live

Part of Barnes’s trouble seemed to come from working with hospital IRBs that lacked any concept of ethnography. Munsch, by contrast, sought to conduct relatively standard psychological experiments, but she too ran into resistance.

Munich wanted to study “’gender identity threat’ to examine how people behave when their status as a man or woman is called into question.“ She would ask undergraduates to complete a survey that would allegedly produce a ”gender identity score,“ though the actual number the subject received was random. ”After receiving the gender identity-confirming or disconfirming feedback, participants would then read vignettes about ethically questionable situations, including instances of sexual violence, and were asked their opinions about the players in each. At the conclusion of the activity, participants would be fully debriefed and learn that their gender identity scores were randomly determined and not valid."

Though “virtually identical research” had already been approved by the IRB, the IRB feared that the subjects could become upset, or worse. The IRB wrote to Munsch that

one potential concern relates to the baseline incidence of suicide on campus and the impact that such “gender confused” feedback might have on certain participants. Is anything known about the propensity to commit suicide in the target population whose gender identity has been threatened? In this regard, whether this study poses a larger than normal risk remains

Eventually the IRB approved the study, but only after insisting on so much debriefing that participants could not take it seriously:

In order to garner IRB approval, the debriefing script was revised to reiterate a total of seven times that the gender identity score participants had received was invalid. While the intention of the IRB was to ensure that participants understood the deceptive nature of the study, this repetition conveyed to participants that femininity among men, and masculinity among women, is nonnormative and undesirable. The debriefing script continued, “Do you feel upset by the feedback we gave you on the gender identity survey?” The question implied that participants might, and perhaps should, feel upset, socializing participants to feel shame about personal associations with the opposite gender. Moreover, assuming some participants would be upset, the IRB required that the debriefing protocol include information for obtaining a referral to the university counseling and psychological services, indicating that participation in the study could be emotionally distressing for participants. Notably, throughout the duration of the study, no participants required a referral to counseling services.

Not only do scripted interactions socialize women and men and reify gender stereotypes, they also disrupt experimenter rapport. A number of participants began to laugh or question the investigator (e.g., “Are you serious?”) in reaction to the lengthy and repetitive debriefing script. Because the interactions often became uncomfortable, the investigator began to explain, “I know this is repetitive, but I am required to read this to you.”

It's Not Just the Sex. It's the Gender

Other scholars, such as Brian Mustanski, Carey Noland, and Janice Irvine have shown how prudish IRBs have inhibited research on sexuality, especially concerning sexual minorities.

Barnes and Munsch break new ground in their emphasis not on sexuality, but on masculinity, and the ways that IRB requirements reinforce traditional gender norms by depicting any departure from those norms as a risk of research. As Barnes and Munsch explain,

The committees’ concerns regarding the “sensitive subject” matter and the potential to “upset” participants across each of our studies reflects IRB reviewers’ own assumptions that infertility and associations with femininity are traumatizing. Moreover, the committees’ requirements to revise the first author’s interview questions and for the second author to “behave normally” were admonitions not to acknowledge that infertility might be challenging or that feminine feedback might be embarrassing. Rather than allowing us to empirically examine men’s feelings regarding infertility and the consequences of masculinity threat, IRB members prioritized what they believed to be their responsibility, as well as the responsibility of researchers: to validate and shore up feelings of masculinity in men.

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