Monday, January 14, 2013

Bell and Salmon Warn of Dangerous Assumptions

Kirsten Bell and Amy Salmon, both of the University of British Columbia, warn that in trying to protect people they consider vulnerable, ethics committees ignore empirical evidence that some measures are counterproductive.

[Bell, Kirsten, and Amy Salmon. “Good Intentions and Dangerous Assumptions: Research Ethics Committees and Illicit Drug Use Research.” Research Ethics 8, no. 4 (December 2012): 191–199. doi:10.1177/1747016112461731.]

The authors' particular interest is studies of people who use illicit drugs. In an earler article, they compared ethics committees' assumptions about these people with the views of the people themselves. Women in focus groups told them that "assuming incapacity merely on the basis of someone's status as a drug 'addict' was stereotypical, simplistic, and discriminatory."

Here, Bell and Salmon compare ethics committee assumptions with published scholarship they found using database searches. Again, they find little empirical support for REC beliefs that drug users lack the ability to provide informed consent, are unduly influenced by financial incentives, or risk being "re-traumatized" by questions.

Though Bell and Salmon focus on research with drug users, they hint at a broader need for "evidence-based research ethics." As the Belmont Report puts it,

the idea of systematic, nonarbitrary analysis of risks and benefits should be emulated insofar as possible. 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. This procedure renders the assessment of research more rigorous and precise, while making communication between review board members and investigators less subject to misinterpretation, misinformation and conflicting judgments . . . The method of ascertaining risks should be explicit, especially where there is no alternative to the use of such vague categories as small or slight risk. It should also be determined whether an investigator's estimates of the probability of harm or benefits are reasonable, as judged by known facts or other available studies.

Bell and Salmon show RECs' failure to meet this standard for one brand of research, but I fear their findings apply to a much broader range of activities.


Alan said...

Sensible risk analysis and response are easier to discuss than accomplish. For one, in general, people are really bad at gauging risks. Lots of people shove their children into cars every day without much thought but will worry about the risk of child abduction. Secondly, risks are the language of persuasion. Many risks are highly politicized. Health care? Lots of screening tests are marketed using fear, but many of the tests aren't very good and the the risk of unnecessary distress and treatment often out-weigh the purported benefits. FUD is everywhere. And third, the response to risk always involves a trade-off but people are much happier living in the fantasy land of "no risk". Either they deny the risk or no risk is too small.

This blog itself, although it makes some good points, hardly passes for a sober, evidence-based analysis of the IRB-related risks to research.

Zachary M. Schrag said...

Thanks for this comment. I fail to see how it responds to Bell and Salmon's suggestion that RECs read relevant scholarly literature before restricting research.