Qualitative Sociologists Find Standard Randomness

Sociologists Sarah Babb, Lara Birk, and Luka Carfagna surveyed qualitative sociologists about their IRB experiences and heard many of the usual horror stories, from insistence on inappropriate consent forms to the dribbling out of concerns over several rounds of comments. Few of their respondents are happy with the present system, though getting the right people in key positions can help.

[Sarah Babb, Lara Birk, and Luka Carfagna, “Standard Bearers: Qualitative Sociologists’ Experiences with IRB Regulation,” American Sociologist, October 6, 2016, 1–17, doi:10.1007/s12108–016–9331-z. Note: I read a version of this article in manuscript and am so credited in the article.]

"One more impediment to getting a worthwhile project done"

A final horror story posted in response to Patricia Aufderheide’s essay, “Does This Have to Go Through the IRB?."

Brian Abel Ragen writes,

Eventually you will probably find a reasonable person to stop the nonsense. That was my experience when one of my graduate students was told that his plan to interview a writer for the New York Review of Books meant he was using “human subjects” and therefore needed to submit his thesis proposal to the IRB after filling out all the appropriate forms and applications. A student asking a professional literary critic why he had championed the reputation of a certain novelist was, quite rightly, seen as an interaction WITH a fellow human being, not research ON a human subject. But that should have been obvious from the beginning. What the whole process did for me as an English professor and my student in the humanities was to create just one more impediment to getting a worthwhile project done—this new obstacle laced with fear of getting in trouble with the Federal government if we made a mistake. It also protected a writer from hearing from someone who admired his work and wanted to explore it with him for a few weeks. So I would say that the limits of the IRB’s powers need to be more clearly drawn, so as to remove one more hazard from the already obstacle-strewn path to completing a degree or a research project. I won’t say that i can’t imagine projects in literary studies that don’t involve using people as actual “human subjects,” but I think the default assumption should be that any project that involves neither deception nor asking the interlocutor to do anything but talk about something is beyond the scope of an IRB.

An IRB need not block a project to discourage curiosity.

IRB consent form spooked respondents

Commenting on Patricia Aufderheide’s essay, “Does This Have to Go Through the IRB?,” a writer with the screen name “reinking” relates:

I was investigating a routine instructional intervention in a school district serving a large hispanic population. IRB required, not just that the consent form be translated into Spanish (not unreasonable if a consent form was necessary), but also that I develop several versions in different dialects. Nonetheless, when sent to parents, remarkably few were returned, and I eventually determined why. The standard template for IRB consent (modeled on far riskier medical research) indicated that any questions or concerns should be directed to me as “principal investigator.” “Investigator” was apparently a term (in English or Spanish) that set off alarm bells among parents in this hispanic community.

So much for IRB sensitivity to local conditions.

More failures of "local precedents"

Laura Stark’s 2012 book, Behind Closed Doors: IRBs and the Making of Ethical Research, devotes a chapter to what Stark calls “local precedents,” her term for “the past decisions that guide board members’ evaluations of subsequent research.” “By drawing on local precedent,” Stark claims, “board members can read new protocols as permutations of studies that they have previously debated and settled based on members’ warrants. The result is that IRBs tend to make decisions that are locally consistent over time.” (47)

But I keep getting stories about IRBs that are locally inconsistent.

"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.]

Linguist condemns "moral depravity of ethics protocols"

George van Driem, Professor of Historical Linguistics at the University of Bern, minces no words in condemning the “moral depravity of ethics protocols.” He argues that human subjects rules primarily serve to cover the asses of Western universities while hampering linguists in the field and insulting the people they encounter. Paraphrasing couldn’t do justice to this marvelous essay, so enjoy the block quotations. Better still, read the whole thing.

[George van Driem, “Endangered Language Research and the Moral Depravity of Ethics Protocols,” Language Documentation & Conservation 10 (2016): 243–252, http://hdl.handle.net/10125/24693].

Texas A&M IRB Imposed Review for Surveys of Public Officials

In their contribution to the PS symposium, Kenneth Meiera and Apolonia Calderona complain of IRB interference in work that is clearly exempt or not even human subjects research.

[Kenneth J. Meier and M. Apolonia Calderon, “Goal Displacement and the Protection of Human Subjects: The View from Public Administration,” PS: Political Science & Politics 49, no. 02 (April 2016): 294–98, doi:10.1017/S1049096516000238.]

IRB Chair: "Nobody Really Knows" If IRBs Do Any Good

A former chair of the University of Wisconsin-Madison Education and Social/Behavioral Science IRB guesses that IRB review “most likely” protects subjects from harm, but concedes that “nobody really knows.” He also notes that it consumes tens of thousands of hours of work, mostly by researchers, at his university each year.

[Kenneth R. Mayer, “Working through the Unworkable? The View from Inside an Institutional Review Board,” PS: Political Science & Politics 49, no. 02 (April 2016): 289–93, doi:10.1017/S1049096516000226.]

Yanow and Schwartz-Shea: IRBs Miss Their Targets

The first IRB related article in the April 2016 issue of PS, and the only one not formally part of the symposium on IRBs, is Dvora Yanow and Peregrine Schwartz-Shea, “Encountering Your IRB 2.0: What Political Scientists Need to Know.” This essay is intended as an introduction to IRB issues for political scientists, and therefore presents material that will be familiar to readers of this blog.

In addition to this helpful introduction, Yanow and Schwartz-Shea make an interesting point about the scope of IRB review: on the one hand, it can be under inclusive, failing to cover serious ethical questions. On the other hand, mission creep continues apace, as universities impose restrictions not dictated by ethics or law.

[Dvora Yanow and Peregrine Schwartz-Shea, “Encountering Your IRB 2.0: What Political Scientists Need to Know,” PS: Political Science & Politics 49, no. 02 (April 2016): 277–86, doi:10.1017/S1049096516000202.]

U of Maryland Scapegoats IRB and Researcher for PR Foul Up

The University of Maryland has released a report on the problematic December 2015 press release, which included unsubstantiated claims about the benefits of a sports drink based on chocolate milk. While the press release was indeed a disaster, the university report fails to hold to account the people most responsible. Instead, it makes matters worse by accusing the researcher and the IRB of transgressions they did not commit, and by recommending drastic changes that are unnecessary and burdensome.

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.]

In NPRM Comments, Historians Applaud Proposed Rule

In addition to the formal comments from the National Coalition for History, endorsed by other scholarly associations, individual historians have begun submitting comments on the notice of proposed rulemaking. Without exception, they endorse the proposal to free oral history from IRB review. The only opposition comes from a professor of education and psychology who seems to suggest that tribal governments should hold veto power over oral history research.

Here are some of the highlights, alphabetical by last name. I have edited some for brevity. Full comments can be found at http://www.regulations.gov/#!documentDetail;D=HHS-OPHS–2015–0008–0001

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.]

Schrag Reviews Klitzman, Ethics Police?

Just in time for the NPRM comment period, Society has published my review of Robert Klitzman’s book, The Ethics Police?: The Struggle to Make Human Research Safe (New York: Oxford University Press, 2015). I note that “By offering the subjective worldview of IRB members, Klitzman shows how good intentions combine with ethical ineptitude to produce arbitrary decisions.”

Per my agreement with Springer, what follows is the accepted manuscript of the review. The final publication is available at Springer via http://dx.doi.org/10.1007/s12115–015–9935-x.

IRBs Ignore South Africans' Concerns

Leslie London and Helen Macdonald, both of the University of Cape Town, complain that funding institutions in North America and Europe solicited their advice but then showed “little regard for local ethical practices in South Africa.”

[Leslie London and Helen Macdonald, “Transnational Excursions: The Ethics of Northern Anthropological Investigations Going South," ResearchGate, 2014.]

Berkeley IRB: 1 + 1 = Undue Influence

In a series of four tweets, Nicholas Christakis of Yale reports a horror story out of Berkeley:

• colleague’s experience with Berkeley IRB: including both the following sentences in an appeal for a survey may result in undo influence.

• sayeth the IRB: so just pick one of 2 sentences “Your participation would mean a lot to me and help my research.”

• sayeth the IRB: so just pick one: “Many of your neighbors are participating, and I’d like to hear your opinion, too.”

• 100,000 people die from medical care yearly, none die from surveys, & our IRB’s are wordsmithing to avoid undue influence?

IRB Asked, USB or FireWire. Silly, but Is It Bullying?

Caleb Carr, assistant professor of communication at Illinois State University, argues that abusive IRBs are best thought of as bullies.

Though IRBs are a legally required element of many higher education institutions and an important ethical part of all, their overextension of unchecked power is creating a hostile work environment for many social scientists, and calling them for what they are – systemic bullies – can empower administrators and faculties to finally respond to the increasing calls for IRB reform.

[Carr, Caleb T. “Spotlight on Ethics: Institutional Review Boards as Systemic Bullies.” Journal of Higher Education Policy and Management 37 (2015): 1–16. doi:10.1080/1360080X.2014.991530.]

University of Queensland Punishes Researchers, Won't Say Why

The University of Queensland demoted a professor and blocked him and another researcher from publishing findings, based on charges that they had not obtained necessary ethics clearances. But the university will not explain its conduct.

[Jorge Branco. “UQ Suppressed Bus Racism Study: Academics.” Brisbane Times, February 27, 2015. Thanks to Michelle Meyer for tweeting this to my attention.]

Atran: IRBs Block Understanding of Terrorism

Interviewed by Nature, anthropologist Scott Atran reminds us that human subjects rules have impeded his efforts to understand the origins of violence like the attack on Charlie Hebdo.

[Reardon, Sara. “Looking for the Roots of Terrorism.” Nature, January 15, 2015. doi: 10.1038/nature.2015.16732. h/t Donald Pollock]

Library Administrator Mistakes FOIA Request for Human Subjects Research

Sometime human-subjects alarmist Michael Zimmer sent requests for public documents to 30 public libraries. Though most librarians welcome requests for information, in the age of the Common Rule, you can't take anything for granted.

[Zimmer, Michael. “New Project on Privacy and Cloud Computing in Public Libraries (and Some Aftermath).” MichaelZimmer.org, January 9, 2015. h/t Rebecca Tushnet]

Zimmer reports:

One library administrator seemed to take some umbrage with my project and approach. That director emailed a larger list of library directors asking if anyone else had received my records request, noting that “There is no promise of anonymizing the data or offer to opt out of the study, which is a typically included in studies these days” and expressing surprise that my IRB would approve such a methodology. (I learned of this concern due to that director’s email being forwarded to a privacy list hosted by the ALA that I’m a subscriber to.) I’ve since replied that this methodology doesn’t involve human subjects, and follows common approaches to obtaining government information (such as the Fordham Center for Law and Information Policy’s excellent research on privacy and cloud computing in public schools). I’ll reach out to this director personally, and hopefully the concerns will be put to rest.