Thank you for your wake up call, Spirit of our time, and thank you also for inviting me to write here.
I share the concerns about the new growth attenuation paper that Spirit of our time expressed in his latest post. I also find his advice to read carefully and slowly totally relevant not only when you read his version of the abstract but when you read the original abstract as well.
There are some particular expressions that worry me a great deal, such as “the scientific rationale,” “informed responses to key clinically relevant questions,” and “potential clinically meaningful benefits of growth-attenuation therapy.” The implication here seems to me to be that this is a medical issue for doctors to consider scientifically, not for the court or the disability rights advocates to interfere with. That reminds me of Norman Fost’s pet theory that the court should have no say in medicine.
I also wonder if they are trying to ward off criticisms from disability studies or disability rights activists by confining the issue within medical argument. But then it also makes me wonder, as Spirit of our time has pointed out, what the working group discussion was all about . The WG had their first meeting in April 2008 and had revised draft (of whatever it might be) circulated for comments in December 2008. I wonder if the WG members were aware, while working as a group, of the fact that three of them were writing a paper independently to maintain that it is a safe and beneficial therapy to be recommended as one of the future choices for profoundly disabled children when they are around 3.
I’m trying to post a list of links to information about Norman Fost in my blog as soon as possible. But for now, you can get a quick idea of Norman Fost’s views by visiting the 2007 Pediatric Bioethics Conference page on the Seattle Children’s site and watch the webcasts of his presentations. There are three available. Parental Requests For “Futile” Treatment, Panel and questions discussing from the Day One, and the Panel and Questions from the Day Two. Please watch all the three and you’ll see that Dr. Fost is a very agressive proponent of futile care theory, with clearly utilitarian values and palpable disrespect to the disabled. Don’t miss the very first part of his Day One presentation where Dr. Diekema introduced him as “mentor of mine.” Dr. Diekema and Dr. Wilfond had their residency at the University of Wisconsin.
Also check out the Ashley case segment of the Larry King Live of January 12, 2007 and maybe more importantly, this extremely curious email discussion of January 5, 2007 on the Scientific American site. In both discussions, Dr. Fost kept a pretense of an uninterested third party ethicist as he strongly defended the decision in the Ashley case, though he is in fact Dr. Diekema “mentor”. For details about some of those including Norman Fost who defended the decision in the very early stage of the Ashley case controversy, visit my posts here and here. It might give you a totally different point of view in looking at this case.