A flurry of discussion on IRBs continues on the Cheiron listserv, much of it regarding the claim that IRBs are by their very nature unconstitutional and should therefore be abolished. One respondent referred me to the ACLU website.

I couldn’t find any information from ACLU regarding the ways in which IRBs limit free speech — although I did find some interesting things on privacy of patient records and protection of human subjects involved in medical research (especially “captive” populations in prisons and juvenile detention centers.”

This brings us all back to why these IRBs were created in the first place. Laura Stark sent me a copy of her excellent article, “Victims in our Own Minds? IRBs in Myth and Practice,” in the most recent issue of Law and Society Review. The article does an excellent job of reminding us why review for social science research originated in the first place. She also confirmed my impression that many of the replies on the listserv were patronizing, and the charge of unconstitutionality just plain silly.

I also plugged my own article, “Using Student Bodies: College and University Students as Research Subjects,” Journal of the History of Medicine and Allied Sciences 57 (2002): 3-38, which gives my further thoughts on human subjects research.

Speaking of the AHA, the organization has asked for members to weigh in on a movement at HHS to create policy for IRBs regarding oral histories (see the AHA blog on this). Naturally, this has caused the usual flurry of outrage about allegedly out of control IRBs and “intrusion” into faculty research. (one person called this whole thing “insane.”) Here are my thoughts as posted on the Cheiron listserv:

As a scholar of disability history, and a person with a mood disorder, I suggest being more careful about tossing around terms like “insane.” Furthermore, I don’t understand how this is a bar to academic freedom — why should historians be exempt from the standards and practices of other human sciences? What does this say about our attitudes towards our research subjects?

If you read carefully through all the material from HHS, they are actually recommending that our kind of research be eligible for expedited review — i.e. they are making it easier for us rather than more difficult.

Perhaps if I give some details on my encounter with my IRB I can make my points clearer. Since I have known our IRB chair for years and we are good friends, it was easy for me to approach this process in a collegial rather than adversarial manner. I realize that others are not this fortunate. During my review, the commmittee determined that my oral histories were not “research” as defined by HHS — i.e. they did not contribute to generalizable knowledge. My anonymous surveys were considered research, but because the identities of the respondents were concealed even from me, the committee gave me the green light to go ahead with the survey. Their only concerns were with sample bias, and they gave me lots of excellent suggestions on how to avoid that. In short, the process helped rather than hurt my research project.

The new guidelines, while inconvenient, are now redefining oral history as research — doesn’t this make our work more legitimate to scientists?

I ran this issue by my IRB chair, (who is also a psychologist by the way). He says that the APA has a task force on this issue. His sense from reading quickly through the material from AHA is that HHS is attempting to clarify things for local IRBs. This may make the process less arbitrary. In my case, my IRB considered the professional standards of the oral history association and the release forms our department has developed as acceptable. Because I was applying for funding from HHS (via the publication grants at the National Library of Medicine) I think going through the IRB made my application stronger — that was certainly reflected in my priority score and summary statement from the review committee at NIH.