The Cost of Ethical Review, Part III: Hindering HIV Prevention

Risk-averse IRBs are hindering potentially life-saving research, write Brian Mustanski and Celia Fisher. “Critical advances in HIV prevention among AMSM [adolescent men who have sex with men],” they note, “have been impeded by the failure of IRBs to apply federal regulations permitting adolescents to self-consent to research without parental involvement.”

[Mustanski, B., & Fisher, C. B. (2016). HIV Rates Are Increasing in Gay/Bisexual Teens: IRB Barriers to Research Must Be Resolved to Bend the Curve. American Journal of Preventive Medicine, In Press. doi:10.1016/j.amepre.2016.02.026.]

NIH Policy Makes Interviewing Children Easier

Susan Ridgely, assistant professor of religious studies at the University of Wisconsin at Oshkosh, finds that IRBs can cause trouble for qualitative researchers who want to talk with children, but that IRB review has some benefits. Moreover, since the NIH started calling for children to be included in medical studies, she is finding it easier to get IRB permission to speak to children.

[Susan B. Ridgely, “Doing Ethnography with Child Consultants: Making the IRB Process Work.” Journal of American Folklore 125, no. 3 (2012): 474–485.]

Autoethnographer Finds REB Review Intimidating

Lee Murray describes getting REB approval for her doctoral research at the University of Saskatchewan. Though she was able to devise a proposal that passed the committee "without taking away from what I want to accomplish," she was left feeling she "would not want to make the journey again."

[Lee Murray, Debbie Pushor, and Pat Renihan. “Reflections on the Ethics-Approval Process.” Qualitative Inquiry 18, no. 1 (January 2012): 43–54. doi:10.1177/1077800411427845.]

Common Rule Is "Out of Place" on the Streets of Bogotá

In the second article in the Professional Geographer special issue, Amy Ritterbusch argues that "when lives are at risk, socially and politically responsible action in the field becomes the driving force of human subjects protection," but that "standard human subjects protection procedures often pull initial field relations in the opposite direction, establishing distance and difference between the researcher and research population through a temporally and spatially restrictive web of institutional categorizations and paperwork that predefine participants’ identities and role in the research project."

She finds that "Although well intentioned, 45 CFR 46 is a bureaucratic discourse that positions youth in problematic ways and is out of place in the world of Bogotana street girls."

[Amy Ritterbusch, “Bridging Guidelines and Practice: Toward a Grounded Care Ethics in Youth Participatory Action Research,” Professional Geographer 64, no. 1 (2012): 16–24, DOI: 10.1080/00330124.2011.596783.]

IRB Sought to Monitor Interviews with Elected Officials

The first article in the Professional Geographer special issue argues that the IRB system assumes that the researcher is a "powerful, knowing agent who assembles a scientific methodology that is always of potential harm to the researched," while subjects are always "less knowing" and vulnerable. As a result, scholars "face the presumption of guilt while seeking to prove innocence in the IRB process of application, negotiation, and usually, but not painlessly, final approval to conduct research."

[Deborah G. Martin and Joshua Inwood. “Subjectivity, Power, and the IRB,” Professional Geographer 64, no. 1 (2012): 7–15, DOI:10.1080/00330124.2011.596781.]

Qualitative Sociology Ventures Beyond the IRB

Back in December, as I was still dealing with a crush of ANPRM-related reading, I mentioned that the journal Qualitative Sociology had published a special issue on "Ethics Beyond the IRB". I have finally found some time to read the intriguing essays it contains.

Compliance Administrator Wants ANPRM to Address Subparts

Writing for PRIM&R's blog, amp&rsand, Wendy Tate, assistant director of process improvement and compliance at the University of Arizona, complains that the ANPRM fails to address the subparts of 45 CFR 46.

[Wendy Tate, "What's Missing in the ANPRM?," amp&rsand, 5 October 2011.]