Emmerich seeks case studies about social science ethics

Nathan Emmerich seeks case studies about social science ethics for the SAGE Research Method Cases.

The Methodspace page explains:

This special collection will be edited by Dr Nathan Emmerich (n.emmerich@qub.ac.uk).  We are interested in cases that discuss substantive ethical issues or concern the process of securing ethical approval to conduct research. In both instances we seek accounts that will provide a description of ‘what really happened’ and offer lessons for those who are conducting similar research. These case studies will have significant pedagogical value whilst also engaging with current developments in the ethics of social science research. This includes the ESRC’s recently revised Framework for Research Ethics (FRE) and the generic principals of research ethics recently adopted by the UK’s Academy of Social Sciences.

If you are interested in publishing your experiences, disseminating your thinking and to promoting your research, or would simply like to discuss the possibilities further, please contact Dr Nathan Emmerich, at: n.emmerich@qub.ac.uk

British Universities See Ethics Committees as "Easy and Convenient" Censors

Adam Hedgecoe reports on two cases in which British university administrators turned to their university research ethics committees (URECs) not to protect the subjects of research, but to block controversial research they feared would tarnish the universities’ reputations.

[Adam Hedgecoe, “Reputational Risk, Academic Freedom and Research Ethics Review,” Sociology, June 25, 2015, doi:10.1177/0038038515590756.]

A Reply to Maxine Robertson

In an essay in Research Ethics, Maxine Robertson, Professor of Innovation and Organisation at Queen Mary University of London (QMUL), responds to my essay, "The case against ethics review in the social sciences," published in the same journal in 2011. I wish she had responded to more of the broader ethics-review critique and offered more details about ethics review at her own institution.

[Robertson, Maxine. “The Case for Ethics Review in the Social Sciences: Drawing from Practice at Queen Mary University of London.” Research Ethics 10, no. 2 (June 2014): 69–76. doi:10.1177/1747016113511177]

First Circuit Denies UK Access to Most Boston College Tapes

The US Court of Appeals for the First Circuit has ruled that Boston College need hand over only 11 of the 85 oral history interviews sought by United Kingdom investigators. The Boston Globe, Chronicle of Higher Education, and Inside Higher Ed see this as mostly a win for Boston College.

[Andersen, Travis. “Major Victory for BC in Court Battle over Belfast Project.” Boston Globe, June 1, 2013.]

More complete coverage can be found at Boston College Subpoena News.

Boston College Oral History Roundup

I rely on the exceptionally thorough Boston College Subpoena News for updates on the efforts of the United Kingdom and United States governments to get access to oral history interviews of participants in Northern Ireland's Troubles, but I feel I should flag three items of special interest to readers of this blog.

British Government Denies Conducting Research

I have reported in the past on the ability of U.S. federal officials to avoid IRB review of their work by asserting that they are not conducting research, even as university scholars doing the same kind of work face sanctions if they proceed without IRB approval.

It turns out that British officials take similar positions:

Having considered these guidance notes, their definitions of social research and the report in question, I can confirm that I do not consider ‘Listening to Troubled Families’ as being within the definition of Government social research and thus the scope of the guidance. My rationale for this is that this report falls more properly within the description ‘dipstick/informal information gathering’.

(Reply from Jane Todorovic, Head of Profession for the Government Social Research (GSR) service at DCLG, 3 October 2012)

[“Policy Based on Unethical Research.” Poverty and Social Exclusion. Accessed January 25, 2013. http://www.poverty.ac.uk/news-and-views/articles/policy-built-unethical-research. h/t Robert Dingwall]

U of Sheffield REC Suspended Professor for Discussing Research

The Times Higher Education reports that in 2010, the director of research in the University of Sheffield Management School told Professor Stuart Macdonald to suspend his research, even though the professor had done nothing but mention another professor's research during a "discussion on research ethics and integrity."

[Paul Jump, "Found guilty until proven innocent over unapproved research claims," Times Higher Education, 25 October 2012.]

The story reports, "Fifteen days later, [Macdonald] received an email from the chair of the research ethics committee, Richard Jenkins, saying a 'misunderstanding' had occurred, although he was offered no apology or further explanation."

Macdonald filed a formal complaint about his treatment by the REC, but it was dismissed.

The case echoes the experience of Bernadette McCauley, who also received an order to suspend all research from an ethics committee that had no idea of what it was doing.

Schrag Responds to Responses to Schrag

The June 2012 issue of Research Ethics features four responses to my December 2011 essay, "The Case Against Ethics Review in the Social Sciences." Three scholars based in Canada wrote a joint response, while three in Britain wrote individual replies. I am grateful to all of the respondents for their attention, kind words, and challenging critiques.

• Nicholls, Stuart G., Jamie Brehaut, and Raphae Saginur. “Social Science and Ethics Review: A Question of Practice Not Principle.” Research Ethics 8, no. 2 (June 2012): 71–78. doi:10.1177/1747016112445435
• Hedgecoe, Adam. “The Problems of Presumed Isomorphism and the Ethics Review of Social Science: A Response to Schrag.” Research Ethics 8, no. 2 (June 2012): 79–86. doi:10.1177/1747016112445437
• Jennings, Sean. “Response to Schrag: What Are Ethics Committees for Anyway? A Defence of Social Science Research Ethics Review.” Research Ethics 8, no. 2 (June 2012): 87–96. doi:10.1177/1747016112445423
• Bond, Tim. “Ethical Imperialism or Ethical Mindfulness? Rethinking Ethical Review for Social Sciences.” Research Ethics 8, no. 2 (June 2012): 97–112. doi:10.1177/1747016112445423

Since the responses overlap somewhat in their themes, I think it best for me to respond to them collectively.

Emmerich Reviews Behind Closed Doors and Ethical Imperialism

Nathan Emmerich of Queen's University, Belfast, finds that Laura Stark's book and my own "together . . . illustrate the nature of ethics as an aspect of research governance fundamentally contributing to our understanding of the phenomena in a manner that goes beyond the relatively limited or restricted consideration offered by applied ethical analysis."

[Nathan Emmerich, Review of Behind Closed Doors: IRBs and the Making of Ethical Research and Ethical Imperialism: Institutional Review Boards and the Social Sciences, 1965-2009, Sociological Research Online 17, Issue 2 (May 2012).]

Dingwall: UK May Enact Research Integrity Rules With Little Scholarly Input

Writing on social science space, Robert Dingwall warns that the United Kingdom's Economic and Social Research Council seems to be crafting burdensome regulations on research integrity without defining the problem to be solved, considering the costs of regulation, or consulting scholarly associations:

REC Forbids Dissertations on Lap Dancing

Robert Dingwall fears that "research ethics is co-opted to infantilize students who are legally adults but treated as if they should never be allowed to risk a bad experience."

[Robert Dingwall, "Better Drowned than Duffers…?," social science space, 19 February 2012.]

Erdos: U.K. Data Protection Act May Stifle Research

David Erdos of the University of Oxford kindly alerted me to two recent publications in which he warns that the United Kingdom's Data Protection Act 1998, which implements European Union requirements, could inhibit social research in much the same way human subjects laws and regulations have done in the United Kingdom, Canada, and the United States.

David Erdos, "Systematically Handicapped? Social Research in the Data Protection Framework, Information & Communications Technology Law 20, no. 2 (2011): 83-101,
doi: 10.1080/13600834.2011.578925
David Erdos, "Stuck in the Thicket? Social Research under the First Data Protection Principle," International Journal of Law and Information Technology 19, No. 2 (2011), doi:10.1093/ijlit/ear001.]

The Costs of Ethical Review, Part II

Researchers on both sides of the Atantic are trying to measure how the delay due to ethics review in medical research can harm or kill those who would benefit from innovative therapy.

[Ian Roberts, David Prieto-Merino, Haleema Shakur, Iain Chalmers, Jon Nicholl, "Effect of Consent Rituals on Mortality in Emergency Care Research," Lancet 377, no. 9771 (26 March 2011): 1071-1072, doi:10.1016/S0140-6736(11)60317-6; S. N. Whitney and C. E. Schneider, "Viewpoint: A Method to Estimate the Cost in Lives of Ethics Board Review of Biomedical Research," Journal of Internal Medicine 269, no. 4, (April 2011): 396-402, doi: 10.1111/j.1365-2796.2011.02351_2.x See also The Costs of Ethical Review. Hat tips to Rebecca Tushnet and Simon Whitney.]

Anxious Pessimism on UK's New Framework for Research Ethics

In March 2010, the United Kingdom's Economic and Social Research Council (ESRC) released its Framework for Research Ethics (FRE) as a successor to its 2005 Research Ethics Framework (REF).

David Erdos kindly alerted me to the November 2010 (Volume 15, Issue 4) issue of Sociological Research Online, which devotes a special section to essays about the new framework.

The six essays in the section suggest that British sociologists are wary of their research ethics committees and the expanded authority granted to them by the new framework.

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.]

A Defense of RECs

Professor Adam Hedgecoe of Cardiff University kindly pointed me to his article, "Research Ethics Review and the Sociological Research Relationship," Sociology 42 (2008): 873-886.

The article is a response to longstanding criticisms of British research ethics committees (RECs), especially those affiliated with the National Health Service (NHS). For example, Sue Richardson and Miriam McMullan surveyed "UK academic social researchers working in Health, or health services researchers, who had experience of using the NHS research ethics process prior to March 2004," in "Research Ethics in the UK: What Can Sociology Learn from Health?," Sociology 41 (2007): 1115-1132. Fifty-one percent of their respondents reported degrading their research design as a result of the committee approval process, while only 32 percent reported making changes for the better. Overall, 59 percent offered negative comments, while only 15 percent offered positive comments. And Richardson and McMullan set a pretty low bar for a positive comment, counting this: "It’s a lot of paperwork but once you know what is required, it’s acceptable." Overall, it seems, NHS RECs are inhibiting the sociological study of health care in the United Kingdom.

Hedgecoe seeks to rebut this impression, based on his observation of three NHS RECs in 2005 and 2006, and some follow-up interviews. He argues that "NHS RECs are not inherently hostile to social science research, especially qualitative research." (882) The double-negative construction of that thesis suggests Hedgecoe's problem: he's trying to prove that something doesn't happen, or at least not as often as ethics-committee critics believe. That's not an easy task, and I congratulate him for trying. But I find the article unpersuasive.

Blame the ESRC?

David Hunter kindly alerted me to Sarah Dyer and David Demeritt, "Un-Ethical Review? Why It Is Wrong to Apply the Medical Model of Research Governance to Human Geography," Progress in Human Geography 33 (2009).

Dyer and Demeritt attack the Economic and Social Research Council's 2005 Research Ethics Framework, the basic document guiding British Research Ethics Committees (RECs) in their oversight of social research. Some of this attack strikes me as misplaced, since it ignores elements of the Framework that address the authors' concerns.

For example, the authors complain that

in the case of critical social science, the aim of the research is typically to expose wider social injustices and in that way actually harm those who benefit from them. But, following the injunction of the ESRC (2005: para 3.2.5) that ‘[p]articipants’ interests or well-being should not be damaged as a result of their participation in the research’, it would be impossible to secure permission to interview employers whose discriminatory practices a researcher was hoping to expose and thereby end. (55)

But the ESRC understands this (somewhat), noting,

Much social science research has a critical role to play in exploring and questioning social, cultural and economic structures and processes (for example relating to patterns of power and social inequality), and institutional dynamics and regimes that disadvantage some social groups over others, intentionally or not. Such research results may have a negative impact on some of the research subjects. (22)

Likewise, Dyer and Demeritt write,

there are times when safety, either of the investigator or of research subjects themselves, means that research subjects cannot be informed about the true nature of research [such as] studies of human trafficking, illegal workers’ gang masters, and so on. In such cases the notion of asking participants to sign a consent form of the sort envisioned by the ESRC (2005) is ridiculous, and the ill of deception balanced by the importance of the research and a commitment to protecting anonymity. (57)

But the Research Ethics Framework recognizes this problem, stating, "informed consent may be impracticable or meaningless in some research, such as research on crowd behaviour, or may be contrary to the research design, as is often the case in psychological experiments where consent would compromise the objective of the research. In some circumstances – such as users of illegal drugs – written consent might also create unnecessary risks for research subjects." (21)

The real problem, it seems, is not the ethical content of the Research Ethics Framework, but the structure it employs to promote those ethics. Project-by-project committee review may be unable to handle the complexity and unpredictablity of social science research. As Dyer and Demeritt write,

Whereas drugs trials involving vast sums of money, or biomedical research on extremely vulnerable people in enormous pain need only gain anticipatory approval, the ESRC argues that because ‘purposes, methods, and intended uses’ of qualitative research evolves as it proceeds, this kind of research should be required to seek REC approval on multiple occasions. Such a disproportionate response is itself unethical if it overburdens researchers such that worthwhile research does not get done. (57)

The underlying issue is that committee review is a process specifically tailored to experimental research. The more a researcher fits the experimental model, the more detailed her protocol will be, and the more amenable to prior review. It's the open-ended, qualitative researcher who has the low signal-to-noise ratio, and for whom ethics committee represent such a waste of time.

The Costs of Ethical Review

In his article on "Regulatory Innovation," discussed here earlier, Scott Burris complains that

the core problem with the Common Rule is the IRB’s power to treat its insights and risk–benefit calculations as ‘‘right answers’’ that may be imposed at no cost to the IRB upon researchers whose own ethical reflection may have led to different, equally defensible conclusions.

Robert Dingwall concurs in his essay, "The Ethical Case Against Ethical Regulation in Humanities and Social Science Research," 21st Century Society 3 (February 2008): 1-12. Though Dingwall is British, he notes that the system there looks "very like US Institutional Review Boards, and their analogues in Canada and Australia." (4) British boards, and British rules in general, fail to account for the costs of ethical review.

This has real consequences. Dingwall relates his own experience:

A colleague and I were recently commissioned by the NHS [National Health Service] Patient Safety Programme to study the national incidence and prevalcence of the reuse of single-use surgical and anaesthetic devices, and to consider why this practice persisted in the face of strict prohibitions. Part of this involved an online survey, using well-established techniques from criminology to encourage self-reporting of deviant behaviour, so that relevant staff in about 350 hospitals could complete the forms without us ever needing to leave Nottingham. However, a change in NHS ethical regulation meant that we needed approval from each site, potentially generating about 1600 signatures and 9000 pages of documentation. Although we never planned to set foot in any site, it would also have required my colleague to undergo around 300 occupational health examinations and criminal record checks. As a result, we were unable to carry out the study as commissioned and delievered a more limited piece of work. Other estimates suggest that the practice we were studying leads to about seven deaths every year in the UK and a significant number of post-operative infections. The ethical cost of the NHS system can be measured by the lives that will not be saved because our study could not investigate the problems of compliance as thoroughly as it was originally designed to. (10)

This is a stark example, but Dingwall sees it as emblematic of a general drag on social research that has consequences for the future of free socieites. Ethical regulation of humanities and social science research, he argues, contributes to "a waste of public funds, serious information deficits for citizens, and long-term economic and, hence, political decline . . . " (10)

Dingwall discounts the need for oversight, arguing that humanities and social science researchers "do nothing that begins to compare with injecting someone with potentially toxic green stuff that cannot be neutralised or rapidly eliminated from their body if something goes wrong. At most there is a potential for causing minor and reversible emotional distress or some measure of reputational damage." (3) I think this takes the case too far. See Sudhir Venkatesh’s Gang Leader for a Day for a recent example of a social scientist who seriously hurt people by breaking their confidences. (The book is recent; the incident took place in the early 1990s.) Dingwall's own research, had it exposed a physician who was illegally re-using devices, would have done irreversible harm to that physician. Rather than arguing that such harms are impossible, Dingwall would be better off arguing that they are a) rare, and b) not likely to be prevented by the forms of prior review now in place.

The Belmont Report calls for "systematic, nonarbitrary analysis of risks and benefits . . . This ideal requires those making decisions about the justifiability of research to be thorough in the accumulation and assessment of information about all aspects of the research, and to consider alternatives systematically." If we were to hold regulatory regimes to the same standard, we would find ample risks, few documented benefits, and no consideration of alternatives.

Participatory Research Meets the IRB

Participatory Research and Participatory Action Research are approaches that seek to include the people studied as participants in framing and answering questions. In Participatory Action Research, researchers also seek to work with participants to effect change, rather than merely identifying problems. For reasons unknown to me, many researchers who embrace these approaches are affiliated with the discipline of geography. In 2006, a number of American and British participatory researchers frustrated by ethics committees found themselves discussing the problem at meetings of the the Association of American Geographers and the Royal Geographical Society/Institute of British Geographers. The result was a special thematic issue (volume 6, number 3, 2007) of ACME: An International E-Journal for Critical Geographies. The ten essays show that participatory researchers think hard about ethics, and as a result often find themselves struggling with ethics committees that do not.

In their introductory essay, "Participatory Ethics: Politics, Practices, Institutions," Caitlin Cahill, Farhana Sultana, and Rachel Pain explain that

As participatory researchers, we pursue research and other activities with communities (or traditional research ‘subjects’) as collaborating partners, with the primary goal of working towards positive changes on issues identified by the collective. We try to engage in all aspects of research - research questions, the choice and design of methods, the analysis of data, the presentation of findings, and the pursuit of follow up action - as collaborative projects which require negotiation between the different parties. So the complex challenge of negotiating ‘ethics’ – as multiple and contested, and whether in institutional or everyday spaces – is central to our research process and inquiry. (305)

Unfortunately, that kind of thoughtful approach to research ethics does not easily fit into the standardized, medical model of ethics committee in the United States and Britain. As the authors note, "researchers seem increasingly subject to a restrictive, inflexible and top-down view of what ‘ethics’ should be, via the codes of human subject panels which we are expected to adhere to." (307)

The remaining essays express frustrations that will be familiar to any social scientist who has followed the IRB debates. Deborah Martin complains that IRBs

conceptualize research participants as “subjects” who face potential harm and exploitation in the research process . . . [Participatory research], however, seeks to redefine the researcher-subject model, conceptualizing research as a collaborative, negotiated process in which the direction and benefits of the research are as much a product of the participants’ involvement as the researcher’s. (322)

Sarah Elwood notes that "institutional ethics assume that ethical problems and risks can be identified before they occur, can be identified outside the context of the research situation, and that rules for ethical practices can be universal." (331) Kye Askins served on an ethics committee and was dismayed that the process emphasized forms and paperwork over training students to think ethically. (358) And Megan Blake complains that "the easy camaraderie born of friendship and underpinned by trust is undermined by [committee's] implicit assumption that the research may lead to harm, exploitation or suffering for those involved." (417)

Two essays present outrageous IRB behavior. Blake's experience at the University of Sheffield sounds more or less comical:

I was required to get a [criminal background check] before I could research the food practices of my children and their friends, and had to have my friends sign confidentiality and copyright agreements as I served them a cup of tea and a biscuit in my home. If I followed strictly the guidelines on anonyminity, I would also be required to ignore the details that I know about my friends as individuals when I analyse their accounts. (417)

More seriously, Matt Bradley spent months meeting with IRB staff and the chair, only to have his project--a documentary film--rejected on the grounds that "there is risk that people in the community might be upset about the portrait that has been painted." (340) This is what lawyers call viewpoint discrimination; Bradley was free to tell a happy story, but barred from telling an angry one. Yet even as it guessed about this risk to a community, the IRB refused to compare it to any possible benefit to that community, as opposed to individual participants or to scholarly knowledge. He concludes that far from manifesting respect for persons,

the IRB’s insistence on anonymity in my case smacked of the paternalism and control . . . Evident in the communications I received from the committee is the notion that the people whom I was involving in my research are not smart enough to make decisions for themselves or to understand the implications and possible repercussions of their decisions. Even more problematic, however, is the notion that the committee is smart enough to make these decisions for the ‘subjects’ and will make choices both about what I can or cannot collect from them and how they can represent themselves. (347)

Other complaints are more specific to the authors' commitment to participatory research. Elwood enlisted non-scholars as "community map makers" in a participatory project. Though these map makers were, in effect, co-authors,her IRB wanted their names stripped from the maps. (333) Eventually, the authors agreed to remove the names from maps printed in academic publications. Thus, the IRB denied the map makers credit for their work. Caitlin Cahill dislikes the Belmont Report's admonition to "do no harm," on the grounds that for a participatory-action researcher, harmlessness alone is an abdication of responsibility. (366) Peter Hopkins complains that "the detached, disembodied and ‘tick-box’ approach adopted by many ethics committees often renders absent the positionalities of the researchers, downplaying the significance of researchers’ life experiences, biographies and complex identities.” (387) While he does not describe in detail his experience with committee approval, his article suggests that he was far better prepared by his own reading than by any guidance from a committee. (389)

The authors do find some benefits to the process. Elwood notes, "discussing how to address the IRB’s concerns forced us to consider more specifically how the research process might affect participants whose experiences might differ dramatically from our own." (332) And rather than thrust an IRB-mandated consent form at her interviewees, she "begin[s] the process by trying to initiate discussion about the history and politics of informed consent in research, reasons why universities require researchers to follow certain protocols, or what the process recognizes and what it might leave out." (336) Thus, she concludes, "Institutional rules for ethical practice in research and systematic oversight of researchers, however partial and frustrating they may be, ensure that all university-based research has at least one forum where the ethics and human impacts of its activities must be considered." (337) Even Bradley, whose project was derailed ten years ago, claims that "the frustrations and different needs of qualitative and action researchers have been heard on many campuses," though for evidence he relies on an article noting positive developments on just two campuses. (347)

Despite the problems they have faced, the scholars represented in this issue appear remarkably hopeful, resilient, and determined to think seriously about research ethics, and they all seek to reform the ethics committee system rather than to escape from it. I hope the committees will prove worthy of their confidence.