Thursday, August 11, 2016

"Vulnerable" participants may have the most to gain from talking

Seven qualitative researchers forcefully argue that IRBs mislead research participants when they demand consent forms stating that interview research has “no known benefits.” In fact, people labeled “vulnerable” by IRBs often gain a great deal by participating in projects the IRBs deem “risky.”

[Tara Opsal, Jennifer Wolgemuth, Jennifer Cross, Tanya Kaanta, Ellyn Dickmann, Soria Colomer, and Zeynep Erdil-Moody, “‘There Are No Known Benefits …’ Considering the Risk/Benefit Ratio of Qualitative Research,” Qualitative Health Research 26, no. 8 (July 2016): 1137–50, doi:10.1177/1049732315580109.]

The researchers describe six qualitative social science projects they conducted over the past decade, in several countries. Three of the six projects secured IRB approval without seriously difficulty, but the other three were hampered by IRB constraints. Kaanta’s IRB demanded that she only interview inter-country Korean adoptees in places where she could find an on-call therapist in the event that her questions triggered “depression and emotional pain.” Nor was she allowed to interview pregnant women. Dickmann faced such a hassle getting permission to interview high school resource officers that she gave up on seeking permission to interview their spouses. And Opsal only got permission to interview women leaving prison after “many IRB challenges.”

The authors appreciate that the IRBs have the participants’ best interests in mind, though perhaps this concern was mixed with “institutional risk mitigation and management.” But they argue that the IRB conditions can have the perverse effect of denying a good experience to the very people they are meant to protect.

The fact is, people like being able to talk to a good listener. As they note,

This was a major theme in Tanya’s study of adoptees as a number of her participants spoke of these transformational impacts. Vanessa explained,

[Before participating] I did not realize how important a Korean identity was. I stifled my Asian-ness in an attempt to find acceptance from peers … I have made peace with my racial and ethnic identity. Thank you, Tanya, for an opportunity to participate in this study. Just verbalizing my experiences to you has brought about closure and healing to childhood issues I was previously unaware of. I’m happy being Asian. I’m happy having a white family. And, I’m happy I can finally say that.

Unfortunately, IRBs do a poor job predicting such outcomes:

These examples provide evidence that there is an important difference in the way individuals who hold more marginalized (“risky”) identities and those who do not experience the benefits across our project. The greater the IRB-defined risk of doing the research, the greater the quantity and quality of benefits expressed by the participants. There was not, however, a parallel finding in our themes centered on the risks individuals professed experiencing (or feared experiencing) by participating in the study. Specifically, we found no patterns of risk by research topic or population; in other words, not only were participants across our studies unlikely to identify experiencing risks because of their participation, but participants from vulnerable populations or sensitive topics were no more likely to identify risks.

Instead, IRBs’ guesswork denies participants the right to make their own choices.

IRBs tend to take a paternalistic approach to research participants and assume their inherent vulnerability, IRBs fail to empower them or their voices through the research process … When IRBs seek to “protect” individuals with marginalized identities or sensitive stories via a legal/risk framework and establish them as risky sites of examination, the entity simultaneously fails to see them as agents who actively negotiate a research space and use it to combat marginalization, take up space, and narrate their own stories … Through all of these actions, then, the IRB unintentionally becomes a part of a larger culture and structure that silences these individuals and, alongside other social actors and institutions, limits their agency.

The authors call for more evidence-based IRB decisions.

Our first recommendation is that IRBs treat as real the evidence for benefits in qualitative research. We would like to see an end to the overly conservative, to the point of being false, assumption that there are “no known benefits” in qualitative interviews. Rather, participant consent forms should include an honest discussion of the benefits of participation.

Conversely, they need to stop imposing boilerplate protections on every project.

An ethical research process is not, for example, providing suicide hotline numbers to every participant at the end of an interview, regardless of their needs. Instead, an ethical research process is one where the researcher is tuned into the needs of the participants, potential strengths and vulnerabilities that the population of focus brings to the table, and ways they can respond appropriately and effectively to each individual.

The authors do not deny that talking can cause harm, and that interviewers should be trained. But the present system is not working to distinguish real dangers from phantoms, and real protections from empty gestures.

In sum, the article is an eloquent contribution to previous calls for human research protections based on empirical evidence rather than gut feelings and urban myths.

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