At the beginning of the “debate” between Dr. Fost and Dr. Lantos on the Bioethics Channel, the interviewer explained, “Dr. Diekema and Dr. Fost were both involved in the Ashley X case”. Dr. Fost himself put a little distance from the case by saying “what the Seattle team had done” in explaining why “we” the authors wrote the recent AJOB article. But that led me back to one of the questions I have been pondering for a long time: What is the role Dr. Fost has been playing in the Ashley X Case?
Dr. Diekema and Dr. Wilfond had their residency at the University of Wisconsin. Dr. Diekema introduced Dr. Fost as “mentor of mine” at the 2007 bioethics conference of the Seattle Children’s Hospital. Dr. Fost has been one of the guest speakers at the conference for years. He’s been often invited to speak at the hospital seminars, too. So we can easily imagine that he is very close to the hospital (or to the Truman Katz Bioethics Center, at least) and that he must have a strong influence on Dr. Diekema and Dr. Wilfond who are both directors of the bioethics center. But did we know that Dr. Fost was “involved in the Ashley case”? As we remember, he was one of the independent professionals in the initial controversy of 2007. An unbiased ethicist invited by the media to comment on the case. Or he acted like one, at least. He was invited by the Scientific American to join the email debate on January 5, 2007 and also invited to join the debate in the Ashley segment of Larry King Live on January 12. So he was involved in the controversy, yes. But he was not there in the controversy as someone ”involved in the Ashley X case” .
Some examples of what he said in the two debates:
I also agree with the father’s observation that having her size be more appropriate to ‘her developmental level will make her less of a “freak” (my word, not his). I have long thought that part of the discomfort we feel in looking at profoundly retarded adults is the aesthetic disconnect between their developmental status and their bodies. There is nothing repulsive about a 2 month old infant, despite its limited cognitive, motor and social skills. But when the 2 month baby is put into a 20 year old body, the disconnect is jarring. (Scientific American)
The detailed account of the medical basis for the decisions in Ashley’s case, as well as the careful ethical reasoning that they relied on, are well documented in the article by Gunther and Diekema, and the father’s extraordinary detailed account of how and why they came to their conclusions. Whatever disagreement critics may have, it is not possible to say this decision was made casually or quickly, without careful consideration of the relevant facts and arguments. (Scientific American)
It strikes me this is an incredibly caring couple who wanted to do what was best with their child. They got a lot of consultation and thought about it very carefully. The used treatments that were not experimental, as people claim. Estrogen has been around for decades, using it to slow down growth has been done before, taking the uterus out of profoundly retarded children to reduce the fears associated with menstruation and reduce the risk of cancer. These are standard things of pretty low risk……..the father’s Web site, which was remarkable. These are good parents who want to care for their child at home as long as possible…….(Larry King Live)
(When Joni Tada questioned the legality of the decision) I can not imagine what law has been violated. These are asking licensed doctors, very respected doctors to provide treatments that is clearly of benefit or at least of potential benefit. These are pretty low risk treatment. I would like to know what law it is that they violated. I cannot think of any. (Larry King Live)
When I first read the two articles back in 2007, I couldn’t believe that there was anyone who would praise that evasive Gunther & Diekema article as “well documented” when the paper totally lacked in the details of the specific ethics committee or its ethical discussion. I couldn’t understand at all how it was relevant whether the parents were caring or good, or whether the doctors were respected or not. “What kind of ethicist is this?“ I wondered and that question made me curious about him. (You will find some of the result of my research here. )
Dr. Fost was not in the growth attenuation symposium of May 2007. He may have been there in the audience, but he was not among the speakers, as far as I remember. He was invited to the pediatric bioethics conference of the hospital in July 2007 and commented on the Ashley case shortly at the beginning of his presentation and praised the hospital for its candidness to go public with the case for open discussion, again commenting as someone outside. In May 2008, he was the last speaker of the growth attenuation panel at the AAP conference in Hawaii in 2008. The next time we saw his name in the case was January 2009, in the list of the members of the growth attenuation working group mysteriously set up by the hospital. And that was probably just about the time, I imagine, when he started teaming up publicly with Dr. Diekema to promote this controversial therapy. He wrote two papers with Dr. Diekema last year. The two physicians look like a promoting engine for growth attenuation (with accompanying possibilities of “prophylactic” hysterectomy and/or mastectomy) that should be OKed for severely disabled children in general without court orders, despite the agreement between the hospital and WPAS. And there was the letter sent to Ashley’s father by a physician who had attended the 2008 growth attenuation panel in Hawaii. (What kind of physician-parent relationship is that, whoever the sender was? )
And it was Dr. Fost, a professor of the University of Wisconsin, debating on the case with Dr. Lantos in the Bioethics Channel last week, not Dr. Diekema who was the ethicist in charge and was directly involved in the case.
What is the role Dr. Fost has been playing in this case?