Dr. Diekema was not chair, it was not an IRB

Many people may believe that Dr. Diekema was chair of the special ethics committee that discussed Ashley’s case on May 5, 2004. But that is, like the “40-member committee” notion, widely shared misinformation.

Ashley’s father writes in his blog,  “The committee chairman along with Doctor Diekema, ethics consultant, conveyed the committee’s decision to us” when the committee discussion was over.

The chairman of the committee was Dr. David Woodrum who was one of the discussants in the WU symposium last May. Dr. Woodrum is clinical director of the Treuman Katz Center for Pediatric Bioethics. For the details of the symposium, visit the hospital website . Read Emi Koyama’s great post , too. She attended the symposium and wrote a detailed report.

 

So Dr. Diekema was not chair of the special committee that discussed Ashley’s case. How did we come to think that he was? The following facts may be part of the reason.

1.      The CNN interview with Dr. Diekema aired on January 11 2007 was started with the introduction: “Dr. Douglas Diekema is director of Education at Treuman Katz Center for Pediatric Bioethics in Seattle, Washington. He led the ethics panel that evaluated the controversial growth attenuation therapy for a severely disabled girl identified only as Ashley.”

2.      In the summary of Dr. Diekema’s lecture for the Calvin College January Series on January 18, it is written that he chaired the ethics committee that ultimately recommended allowing the procedures for Ashley.

Does this mean that the CNN interviewer Amy Burkholder and the college website staff both misunderstood and made the same mistake? But couldn’t Dr. Diekema himself have easily noticed and corrected the mistake?

Now check this amazing fact.

3.     The American Medical Association newspaper published two articles on this case written by its staff writer Kevin B. O’Reilly last year. The first is Growth-curbing therapy spurs rights dispute: The “Ashley treatment” developed for a girl with severe disabilities raises the medical ethics question: For whose benefit was it done? published February 5, 2007. O’Reilly wrote correctly in this article “An interdisciplinary hospital ethics committee approved the treatment.” But when he interviewed Dr. Diekema and wrote his second article on March 12, 2007, Physician-ethicist explains “Ashley treatment” decision, its subtitle goes: The chair of the IRB that approved the controversial treatment of a child with severe disabilities offers insight into the dilemma.

It is true that Dr. Diekema is a chair of the IRB(institutional review board) of the hospital. But it was not the IRB but the hospital ethics committee that approved the controversial treatment. O’Reilly wrote correctly that it had been the ethics committee in February. How did he change that and make such a serious mistake, when he should know, as a medical writer, the implication of the IRB approval instead of the clinical ethics committee’s? What (or who?) put the idea in his head?

An institutional review board (IRB) and a clinical ethics committee are different mechanisms. They are different in their roles and also in their legal standings. As someone who co-chairs the IRB of his hospital, Dr. Diekema should be fully aware of the difference. He should know better than leaving this mistake uncorrected.

 What about other doctors of the Seattle Children’s Hospital who know the truth? What about Dr. Woodrum, the chairman? Can it be possible that none of them read this article in the American Medical Association newspaper in the middle of the controversy? How could they read it and not heed the mistake? 

Here’s another fact I’d like to consider in terms of this “mistake”. 

4.      Dr. Gunther and Dr. Diekema wrote in the ethical debate section of their medical paper, Attenuating Growth in Children With Profound Developmental Disability, Arch Pediatr Adolresc Med. 2006;160:1013-1017 that an ideal safeguard for future growth attenuation therapy application would be involving an IRB.

It was obviously in their mind that it would have been ideal if they had got an approval from the IRB. (I wonder if it was also in their mind that they should have.)

So, the CNN interview, the Calvin College lecture summary and the AMA newspaper article, are these all innocent mistakes on the part of the interviewers and writers or what?

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Refer to the websites below for information about IRBs and ethics committees.

IRB (Wikipedia)

Ethics Consultation in United States Hospital: A National Survey  Ellen Fox, et, al., The American Journal of Bioethics, Volume7, Issue 2, February 2007, Pages13-25

Willing, but waiting: Hospital ethics committees, by Keven B. O’Reilly, amednews.com, January 28, 2008 (Dr. Diekema’s comment included.)

Bioethics Consultation Service page of the Seattle Children’s hospital’s website

Institutional Review Board page of the Seattle Children’s Hospital website