Wednesday, October 10, 2012

Mark Israel Questions Lists of Vulnerabilities

Mark Israel, Winthrop Professor of Law at the University of Western Australia, sees problems with mandatory ethics review but doubts that they can be fixed by limiting such review to projects involving "specific vulnerable groups."

[Mark Israel, “Rolling Back the Bureaucracies of Ethics Review.” Journal of Medical Ethics (October 2, 2012), DOI:10.1136/medethics-2012-100942.]

Israel's essay responds to Murray Dyck and Gary Allen, who hope to "move ethical review from approving a proposed project to providing guidance and feedback on submitted projects." Israel acknowledges the flaws in the present system, including, in his words, "the numbers of committees claiming jurisdiction of any particular piece of research are expanding and it is frequently left to the researcher to sort through competing and incompatible rulings; research ethics committees appear to be used as gatekeepers by their institutional hosts with the discourses of ethics deployed to make legitimate a far less laudable desire of avoiding external scrutiny; some of the more dubious research projects evade review either by concealing their true intent from committees or by falling outside the jurisdiction of review bodies."

Israel does, however, take issue with the suggestion by Dyck and Allen that while ethics review should not be compulsory for most projects, "There may be cases where prior ethical review should be mandated, such as in the case of research with specific vulnerable groups (possibly including prisoners, refugees, persons not capable of providing consent, unborn foetuses, and dispossessed cultural groups) and specific areas of research (including work intended to expose illegal behaviour) . . ." Israel notes that while policies in Canada, the United Kingdom, and the United States all rely on such lists, "the issue of powerlessness is relative and points to the unequal relationship among researchers, research participants and various other stakeholders. This cannot be captured by a list."

This is indeed true, but it can support an argument for greater or diminished ethics-committee jurisdiction. Israel seems to think that the blurry edges of vulnerability argue for sweeping most research into mandatory review. I see them as a challenge to the wisdom of empowering inexpert review bodies rather than researchers to decide who is vulnerable to what kinds of research.

As an example of the problem of letting committees decide who is vulnerable and what is dangerous, I would note the striking comments posted to this blog by medical anthropologist Kimberly Sue:

One major concern was that my questions might increase the risk of cravings (for drugs)-- one of those questions [the IRB] expressed concern about was: "How do you feel on your drug of choice?" It's really a pretty basic, standard qualitative drug question. I was asked to explain why the question was necessary for my research (short answer--it's necessary for an anthropologist to try to understand the lived experience/subjectivities of drug users) and what steps I would take to minimize the risks that answering these questions could lead the subject to crave drugs . . .

I researched the question about craving by talking to a woman who is advising my project, who is many years in recovery from opiates. She scoffed at the notion that my questions would cause drug cravings more than what she encounters every day in the world. Just the thought of the upcoming weekend, seeing someone's protruding vein on an arm, passing by a sign on a freeway where she had once bought drugs--all of these can cause cravings. Having a cravings, of course, does not necessarily mean someone will go out and use. It's patronizing and out of touch with reality for the people on the IRB to think that my research questions are a significant risk for increased drug use.

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