Bioethics Blogs

"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.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.