Friday, April 13, 2007

What is PRIM&R?

In a comment on an earlier posting, Dr. Jeffrey Cohen takes issue with my referring to Public Responsibility in Medicine and Research (PRIM&R) as "a body dominated by professionals involved in biomedical research.”

Cohen writes,

“even though PRIM&R's name refers to medicine, that is a carry over from it formation over 30 years ago. Since then PRIM&R has grown into an organization that includes all aspects of human subjects research, including the social sciences.”

PRIM&R indeed seeks to control many kinds of research, but it fails to include all types of researchers. Its board of directors includes 22 active members. Nineteen of them (86 percent) are by training or affiliation clearly in the biomedical camp. Of the remaining three, Charles McCarthy is a former senior official at the National Institutes of Health. That leaves two university IRB officials—Keane and Selwitz—as the sole directors whose affiliation is not primarily biomedical. No social or economic researchers sit on the board. That's what I call domination.

Even when PRIM&R ponders what it calls “social, behavioral, and economic research,” it ignores social and economic researchers. The faculty list for the upcoming “SBER” conference lists twenty people. Some of them are psychologists, known in IRB terms as behavioral scientists. But how many are researchers in economics, the social sciences, or the humanities? Well, if we count law, there’s one.

So let me amend my comment: PRIM&R is a body dominated by professionals involved in biomedical research who like to impose medical ethics on other fields.


Jeffrey Cohen said...

First of all, PRIM&R does not "control" research and does not "like to impose medical ethics on other fields". PRIM&R is solely an educational and professional organization. It conducts educational programs, such as conferences, and professional development activities for its members. It does not regulate research or IRBs, nor does it set policy on human subjects research.

I will concede your point about the membership being dominated by biomedical people and I have passed along your concern to the PRIM&R officers.

Given that, however, PRIM&R has always addressed social and behavioral science issues in its conference. I have been atending and participating in almost all of the PRIM&R human subjects conferences since 1979 (probably when you were in grade school) and they have always included sessions on these issues. Many distinguished social and behavioral scientists, including historians & economists, have been on the faculty and have participated in workshops and panels. Last year we invited Linda Shopes to the conferenc. She participated on a panel on oral history and IRBs (with me) and moderated several workshops. We would be happy to include more historians in this year's conference. In fact, if you would like to participate in the conference, we'd be happy to work you in to the program (provided you have something constructive to say). Conversely, how many IRB people have been invited to professional meetings in your discipline? I would be happy to come to any meeting of historians and defend IRBs.

With regard to the upcoming PRIM&R SBER Conference in May, what you posted was a early, preliminary list of the faculty. The final list will have more social scientists. We also tried to get more social science researcher to participate, but many that we contacted could not make the conference. I am Co-Chair of the conference (along with Tina Gunsalus) and the conference is dedicated, among other things, to educating IRBs on how to use the flexibility in the regulations to review SBER research without unduly burdening or interfering with the research process.

Zachary M. Schrag said...

I am deeply frustrated by disclaimers of responsibility like the one that begins Dr. Cohen's comment. IRB members attend PRIM&R conferences and purchase PRIM&R training materials. For Cohen to claim that PRIM&R does not control research is like Wal-Mart claiming that it has no responsibility for the sweatshop conditions in its suppliers' factories. In theory, the IRBs and the factories are independent, but in practice, they follow guidance from above.

PRIM&R does have a good record of inviting critics, going back to Pattullo and Pool in 1979. But I question the parameters under which they participate. If the purpose of the upcoming conference is to educate "IRBs on how to use the flexibility in the regulations to review SBER research," that already assumes that IRBs will regulate SBER research, and that SBER research is a meaningful category. It seems that PRIM&R's answer to complaints from social scientists always takes the form of expedited review, rather than consideration of excluding whole categories of research.

I appreciate the invitation to Colorado and regret that family responsibilities will keep me from traveling in May. Should I find myself on a program committee or panel dealing with these issues, I will keep in mind Dr. Cohen's kind offer to participate.