It is a common ritual among today's academics to submit one's research proposal to a group of colleagues, the Research Ethics Board (REB ). At its outset some 30 years ago, this research ethics committee had the mandate to decide whether the public is at more than everyday risk from your project, and it was understood that this would be a rare event in social sciences and humanities research. However, the domain of review has expanded greatly, especially in the social sciences and humanities, and forums to meaningfully discuss concerns with this enterprise are very limited compared to the ubiquitous and increasingly obligatory "how-to-comply" workshops.
The reasonable concept of everyday risk has been distorted into euphemisms for "zero risk" (e.g., optimal risk, minimal risk), thus expanding the mandate by fiat to effectively do away with the reasonable categories of review such as proportional, expedited, and exempt (PEE). Institutions freely add legal liability to REB deliberations, as if there were any life situations where litigation cannot occur. Concepts such as "good clinical practice" are borrowed from medical research reviews, even though in the social sciences our subjects are very seldom "patients," nor do we have treatment as the primary objective of our research. The notion of a rigid "protocol" is also borrowed from medical research, notably the Consumer Reports style clinical trials. Such a priori specifications are an impossibility in ethnographic research, for example, where the patterns emerge as the observations are made. Likewise the notion of a protocol or recipe deludes outsiders into thinking they can accurately assess good methodology in your proposal.
Campus ideologues freely add "social worth" to the review criteria, as if this can be determined without first collecting and examining the data. The meaning of "research" has been expanded to more or less include any interpersonal interaction of an academic with another person. Trained academics are thus constrained from doing what ordinary citizens do without seeking permission. Perhaps as part of a general cultural trend to make everyone a victim (Furedi, 2002; Sommers & Satel, 2005; Wright & Cummins, 2005), "vulnerable populations" has been paternalistically expanded to take away self-determination from mainstream adults.
Once is not enough, we must have annual re-reviews, even if nothing has changed. Likewise, approval elsewhere is never sufficient, it must be re-reviewed locally -- one incident in Australia involved 60 applications (Whiteman, Webb, Purdie, & Green, 2003). The absence of repeat-reliability is actually celebrated as revealing different ethical voices. Requiring the review of classroom activities effectively puts the REB in charge of the academic mission of the university.
Many of these creeps seem designed mainly to establish authority, sometimes gently ala Furedy's (1997) velvet totalitarianism. Public safety is either a forgotten objective, or a notion defined so broadly as to be useless. The fact that most applications are approved with revision does not contradict a charge of censorship -- books need not be burned for censorship to have occurred. In fact, the worst censorship, and the most effective, is the self-censorship which the REB industry has produced. It is true that many of these creeps are due to local decisions, rather than federal regulations, but the silence of the federal regulators to the overkill seems to speak clearly.
The lack of accountability in the research ethics industry is a long-standing sore point. Some recent developments in the USA deserve note because they involve criticism from the legal community. First, the question of censorship and its legality has recently been examined by Philip Hamburger (2005), a legal scholar at Northwestern University. Although the legal specifics are somewhat different in Canada and the USA, this paper is intriguing. Another group has produced a white paper criticizing mission creep as diverting resources and thus actually diluting the protection of human participants (Gunsalus, et al., 2005, 2006; see also Haggerty, 2004).
Perhaps the first creep was the extension from funded research to unfunded research, which takes us to a third development in the USA. The federal grant agencies in the USA originally developed the research ethics regulations to cover projects they funded. Fair enough perhaps, but university administrators obligingly extended the mandate to review unfunded projects as well. Over time the voluntary nature of this expansion was forgotten, and most researchers in the social sciences and humanities, where most research is unfunded, did not realize that it was actually their employer making them do it rather than the federal agencies. A recent Freedom of Information Act inquiry to the Office of Human Research Protection (OHRP) by the American Association of University Professors (AAUP) reveals that over 170 organizations have recently renegotiated their Federal Wide Assurance agreements so that the legal separation of federally funded and unfunded research review is reinstated. This does not mean that unfunded research goes unreviewed, but that the nature of the review and the committee that does it is a local decision, as I understand it. I am told we can expect a report on this from the AAUP, perhaps as soon as September. With such a history of mission creep by local committees, it will be interesting whether the re-invented reviews make any more sense than the present process.
The funded-unfunded distinction in Canada is not as clear in its legal basis. The TCPS (2004) interpretation tries to deny any distinction between funded and unfunded research. It is one thing for the grantor to claim dominion over that which is paid for, but it seems to me unreasonable to claim authority over what one has not paid for. It is not unusual for a bureaucracy to expand its reach in such a manner, especially when not challenged, but this interpretation seems to invite further examination, on the grounds of ethics if not technical legality.
It is with glee that REBs offer "It's the law" as a pronouncement intended to deflect any criticism or prospect of reform. However, it would be more accurate to state this as "It's just the law," given that the law is an arbitrary human construct that changes regularly. Further, to honor the REB industry's preoccupation with the Nuremberg trials, we should all recall another development in those trials, namely that "Just following orders" was not deemed a satisfactory defense. I do not know if the TCPS interpretation has ever been challenged legally, and not being a lawyer I have no idea as to what the probable fate of such a challenge might be. However, I doubt that university administrations are likely to display any initiative or integrity in this regard, given their dependence on the federal largesse.
In passing, another recent development may hold some promise with regard to if not reform at least some degree of accountability. O'Brien (2006) describes a situation whereby research ethics decisions were made subject to appeal to the campus faculty union, rather than just back to the committee that made the decision. This possibility follows from the mundane fact that research is a job requirement (a part of the holy trinity: teaching, research, service), as opposed to the pious characterization of research ethics officials that it is somehow a privilege. As such, anything that impedes your ability to do your job is grievable. This may or may not be the most desirable solution to accountability, but it seems better than the kangaroo court that appeals are subject to now.
Finally, it is of note that a new journal devoted to research on research ethics has appeared, The Journal of Empirical Research on Human Research Ethics (http://www.csueastbay.edu/JERHRE/). In its first issue, van den Hoonaard and Connolly (2006) provide an examination of how REB constraints seem to have reduced the complexity of student theses in anthropology, and there is further work on-going with regard to theses in other disciplines. One journalism school in the USA has even dropped the research requirement from its Master's requirements following an impasse with the campus ethics committee. The creeps are very much on-going.
- Furedi, F. (2002). The culture of fear: Risk-taking and the morality of low expectation. London: Continuum.
- Furedy, J.J. (1997). Velvet totalitarianism on Canadian campuses: Subverting effects on the teaching of, and research in the discipline of psychology. Canadian Psychology, 1997, 38, 204-211.
- Gunsalus, C.K., Bruner, E., Burbules, N.C., Dash, L., Finkin, M., Goldberg, J.P., Greenough, W.T., Miller, G.A., Pratt, M.G. (2005). The Illinois White Paper: Improving the System for Protecting Human Subjects: Counteracting IRB Mission Creep. November, 2005, on-line. http://www.law.uiuc.edu/conferences/whitepaper/
- Gunsalus, C.K., Bruner, E., Burbules, N.C., Dash, L., Finkin, M., Goldberg, J.P., Greenough, W.T., Miller, G.A., Pratt, M.G. (2006). Mission creep in the IRB world. Science, 2006 (9 June), 302 (5779), 1141 (editorial). http://www.sciencemag.org/cgi/content/summary/312/5779/1441.
- Hamburger, P. (2005). The New Censorship: Institutional Review Boards. The Supreme Court Review, 2005 (May), 271-354. http://www.law.uchicago.edu/academics/publiclaw/95-ph-censorship.pdf
- Haggerty, K. (2004). Ethics Creep. Qualitative Sociology, 27(4), 391-414. (also http://www.aapss.org/section.cfm/1058/disc_tpc/48/48/0)
- O'Brien, R. (2006). The Institutional Review Board Problem: Where it came from and what to do about it. Journal of Social Distress and Homeless, 15 (1), 23-46.
- Sommers, C.H. & Satel, S. (2005). One nation under therapy. NY: St. Martin’s Press. http://www.onenationundertherapy.com/
- TCPS (2004). Applicability of the TCPS to Agency-funded Organizations as well as those not Funded by the Agencies. On-line, July, 2004, http://www.pre.ethics.gc.ca/english/policyinitiatives/interpretations/interpretation011.cfm
- van der Hoonaard, W.C. & Connolly, A. (2006). Anthropological Research in the Light of Ethics Review: Canadian Master's Theses, 1995-2004. Journal of Empirical Research on Human Research Ethics, 2006, 1(2), 59-69.
- Whiteman, D.C., Webb, P. M., Purdie, D.M., Green, A.C. (2003). National ethics committee urgently needed. Medical Journal of Australia, 178 (4), 187. http://www.mja.com.au/public/issues/178_04_170203/whiteman_170203.html
- Wright, R.H. & Cummins, N.A. (2005). Destructive trends in mental health: The well-intentioned path to harm. NY: Routledge. See also http://www.narth.com/docs/destructive.html