A social scientist’s guide to the Final Rule

On 18 January 2017, sixteen federal agencies announced revisions to the Federal Policy for the Protection of Human Subjects. As I noted earlier, this marks a huge victory for historians, who have spent the last 20 years working to end the inappropriate interference of IRBs with oral history research.

In addition, the final rule includes several provisions of note to scholars in the humanities and social sciences. Here are some of them; I don’t claim it is a complete list.

"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.]

Strangers on a Train

In Patricia Highsmith’s novel, Strangers on a Train (adapted for the screen by Alfred Hitchcock), a sociopath plans to get away with murder. Rather than kill his own nemesis and risk arrest, he will kill the troublesome wife of a stranger, and expect that stranger to reciprocate by killing his detested father. Since each man could arrange to be out of town at the time of his relative’s murder, each alibi could be ironclad.

Ethnographers Staci Newmahr and Stacey Hannem think this is a good way to deal with the IRB. The idea might be stupid enough to work in some cases, but it is also a distraction from the hard work of regulatory reform.

[Staci Newmahr and Stacey Hannem, “Surrogate Ethnography Fieldwork, the Academy, and Resisting the IRB,” Journal of Contemporary Ethnography, May 10, 2016, doi:10.1177/0891241616646825.]

Wynn Calls for Department-Level Review of Student Research

L. L. Wynn, an anthropologist at Macquarie University and a member of that university’s Human Research Ethics Committee, spoke to 40 teachers and administrators at 14 Australian universities. She finds that “opportunities for independent undergraduate human research are being eroded by expanding ethics bureaucracies” and that “the ethics review process [is] a significant obstacle to universities and teachers who wish to incorporate original human research into the curriculum.” (7) She calls for the devolution of ethics review to individual departments.

[L. L. Wynn, “The Impact of Ethics Review on a Research-Led University Curriculum Results of a Qualitative Study in Australia,” Journal of Empirical Research on Human Research Ethics, Published online before print, March 16, 2016, doi:10.1177/1556264616636234.]

IRB Manager Laments “Unhappy Marriage” with Ethnography

Writing for Contexts, Abigail Cameron, an IRB manager for the Texas State Department of Health Services, laments that “IRBs and ethnographers often ‘talk past each other’ resulting in confusion, delays, and frustration—i.e., a very unhappy marriage.” She rightly blames faulty federal regulations as the prime cause of this unhappiness, yet she downplays IRB misbehavior as a contributing factor.

[Abigail E. Cameron, “The Unhappy Marriage of IRBs and Ethnography,” Contexts, accessed March 24, 2016, h/t Rob Townsend.]

My NPRM Comments

Perhaps 2016 will be the year when OHRP makes good on its 2007 promise to “give more guidance on how to make the decision on what is research and what is not,” in the form of a promulgated revision to the Common Rule. If so, Happy New Year, OHRP!

Wth these hopes, I have submitted my own comments on the NPRM. I have posted a copy of the PDF I submitted, and below is a web version with links.

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.]

My NPRM Response. Draft 1.

Though the deadline for commenting on the NPRM has been extended until January 6, I post here a draft of my comments in the hopes that they may help others craft theirs and send me feedback on mine.

Goffman Blames IRB, Again

Sociologist Alice Goffman claims that “IRB guidelines” prevent her from disclosing the location where she was interrogated by police.

[Paul Campos, “Alice Goffman’s Implausible  Ethnography,” Chronicle of Higher Education, August 21, 2015. (paywall)]

Goffman's Tightrope

Two new articles add useful context to the debate about Alice Goffman’s On the Run. Together, they show just how narrow a path Goffman was walking between privacy and verifiability, and between scholarship and good writing. I will address the IRB issues in a separate post.

[Jesse Singal, “The Internet Accused Alice Goffman of Faking Details In Her Study of a Black Neighborhood. I Went to Philadelphia to Check,” Science of Us, June 18, 2015.; Leon Neyfakh, “The Ethics of Ethnography,” Slate, June 18, 2015.]

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]

Bell: Ethnography Shouldn't Be Like Victorian Sex

Writing in American Anthropologist, Kirsten Bell argues that ethnography should not be seen as a violation to which an informant must consent, and "although the concept of informed consent has now been enshrined in the AAA Code of Ethics for more than 15 years, the reality is that it is not an appropriate standard with which to judge ethnographic fieldwork."

[Bell, Kirsten. "Resisting Commensurability: Against Informed Consent as an Anthropological Virtue." American Anthropologist, July 21, 2014, doi:10.1111/aman.12122.]

Microsoft Seeks Ethics Review Without Bottlenecks and Frustration

Duncan Watts of Microsoft Research announces Microsoft will soon launch "an ethics-review process for human-subject research designed explicitly for web-based research." Could such a process avoid the pitfalls of the IRB?

[Watts, Duncan J. “Lessons Learned From the Facebook Study.” Chronicle of Higher Education Blogs: The Conversation, July 9, 2014. h/t Rebecca Tushnet]

IRB Imposed Anonymity on Campus Politics Book

An unnamed IRB prevented two sociologists from identifying the sites of their research, reducing their book's scholarly impact.

[Amy J. Binder and Kate Wood, Becoming Right: How Campuses Shape Young Conservatives (Princeton University Press, 2012).]

Report from the National Academies Workshop

Last week I attended the Revisions to the “Common Rule” in Relation to Behavioral and Social Sciences Workshop sponsored by the National Academies.

I live-tweeted the event on my @IRBblog account, and I have collected those tweets on Storify.

What follows are what I consider some of the key messages from selected presenters. The statements following each name represent my summary of the remarks, not necessarily a quotation or paraphrase.

IRBs Impeded Harvard Dissertation on Addiction and Incarceration

Kimberly Sue, a medical anthropologist in Harvard's MD/PhD program, reports that IRB review can seem "a hassle, a nuisance or a stumbling block, as we seek to enact a more relevant and engaged era of anthropology."

[Kimberly Sue "Are IRBs a Stumbling Block for an Engaged Anthropology?" Somatosphere, 9 August 2012, http://somatosphere.net/2012/08/are-irbs-a-stumbling-block-for-an-engaged-anthropology.html . h/t Michelle Meyer]

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.]

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.

AAA Draft Code: "Easily Remembered" or Overly Simplistic?

The American Anthropological Association (AAA) has released a draft code of ethics, the latest step in a revision process that began in late 2008, as well as a Final Report of The Task Force for Comprehensive Ethics Review. An Executive Board subcommittee is taking comments until January 30, 2012, at ethicsfeedback@aaanet.org.

As a non-anthropologist who respects disciplinary differences, I don't mean to tell anthropologists what to do, and I do not plan to submit a comment to the subcommittee. But I can point out that while the two documents represent an impressive effort, the draft code does not reflect all the concerns of some anthropologists who have thought seriously about ethical obligations.

No, Seriously

Irena Grugulis, Professor of Employment Studies at Bradford University in the United Kingdom, complains that an ethics committee imposed medical standards on her organizational research.

[Irena Grugulis, "Research Ethics and James Bond," Social Science Spaces, 6 January 2011.]

She writes,

My own work is probably about the least harmful you can imagine. I spent last year conducting an ethnography of a computer games company, watching the way people learned skills and the way they were managed. No under-18s, no members of vulnerable groups, no illegal activities. Everyone was told who I was in advance by the company, both company and individuals would be anonymised in any publications and before observing anyone I would ask their permission. So far so unexceptional, and the only problem I anticipated was whether informants would be happy to accept Krispy Kreme doughnuts in exchange for being mithered at work.

Enter the ethics committee. They insisted on full written consent from every worker in the offices (about 250), every delivery person and – on the occasions I went off for a chat with informants – every barrista who served us coffee and waitress who brought us pizzas (no, seriously). An extensive correspondence later, since that would have effectively made an ethnography impossible, they grudgingly agreed to let me proceed and turned their attention to other social science projects. They queried the relevance of research into trade unions and advised that researcher to take steps to ensure their personal safety (because union members are sooooo dangerous), issued formal guidance that interviews over 30 minutes required special permission from the committee and, in the famed Battle of PostModernist Hill, decided that auto-ethnography should be barred.

As Grugulis notes, such restrictions violated the guidelines of both the British Sociological Association and the Economic and Social Research Council. This shows that even in countries such as Canada and the United Kingdom, where social scientists have worked out ethics guidelines nominally more pluralist than the Belmont Report, ethics committees continue to impose medical rules on non-medical fields.

[Note, 14 January 2011: I originally entitled this post, "Ethics Committee Hampered Management Research." On reflection, I realized that that headline did not do justice to the wit and exasperation of Professor Grugilis's story.]