Research Participants Find REB Assumptions "Stereotypical, Simplistic, and Discriminatory"

While I'm catching up on my JERHRE reading, here's an important article from the December 2011 issue. An anthropologist and a public health researcher at the University of British Columbia have found that women who use drugs resent assumptions that they are unable to consent to participating in research, and they consider participation in such research to be an absolute right.

[Kirsten Bell and Amy Salmon, "What Women Who Use Drugs Have to Say About Ethical Research: Findings of an Exploratory Qualitative Study." Journal of Empirical Research on Human Research Ethics 6, no. 4 (December 1, 2011): 84-98, DOI: 10.1525/jer.2011.6.4.84.]

Bell and Salmon begin with previous findings that

Clearly, research with drug users entails very real ethical issues that require careful consideration on the part of researchers and institutional review boards. In light of these issues, it is unsurprising that applications for institutional ethics approval submitted by addictions researchers often undergo intense scrutiny. However, anecdotal evidence suggests that review boards' zeal in their application of ethics guidelines to drug research is partially due to over-protectionist attitudes. Unfortunately, these attitudes are often formed without an adequate understanding of the realities of drug use and rely to some extent on prevailing stereotypes that depict drug users as selfish, irresponsible, and unable to make sound judgments.

The limited available empirical research into drug users' understanding and experiences of research suggests that the concerns of institutional review board members about the capacity issues of drug users and the potential coerciveness of financial incentives are overstated. Ironically, concerns expressed in the name of protecting drug users may actually harm individuals by inhibiting research that is beneficial to them and their communities or disallowing study procedures that participants themselves endorse as ethical and respectful. (85. Citations omitted.)

Wanting to know how women in particular felt about this issue, Bell and Salmon designed an "exploratory focus group study conducted in Vancouver, Canada, in 2008 with women who use illicit drugs." (85) They found that

Women were highly critical of assertions that drug users lacked the capacity to consent to research. A consistent message across the focus groups was that assuming incapacity merely on the basis of someone's status as a drug "addict" was stereotypical, simplistic, and discriminatory. Participants insisted that capacity was a highly individual phenomenon that needed to be determined on a case-by-case basis. However, differing opinions were expressed on whether it was appropriate for people who were acutely intoxicated to take part in research, some asserting that people who were "high" should be actively excluded and others suggesting that there were benefits to including such individuals. Interestingly, one idea that was commonly expressed (although not consistently endorsed) across all of the focus groups was that in principle exclusions of actively intoxicated individuals were discriminatory and potentially harmful. For some women, the right to take part in research was deemed to be absolute—and trumped the informed consent requirements articulated in standard bioethical guidelines. (91)

Bell and Salmon conclude that "the unquestioning transposition of ethical principles from clinical and biomedical research to social science research has led to inappropriate practices that may actually encourage less ethical practice," with a gracious citation to your humble blogger.