Questions about the growth attenuation working group article in HCR Part 2

 

The WG article explains that the group was assembled to “discuss the ethics of growth attenuation in greater depth and develop practical guidance for health professionals. “  So, it was the purpose of assembling the group to develop practical guidance for health professionals, from the beginning.

I have some questions about this.

1)    Where is the urgent need to develop any guidance for growth attenuation, which is not a therapeutic treatment? It is not one of those treatments you have to put to general practice as soon as possible to save lives.

On the other hand, the first case of Ashley was found illegal. Not just WPAS found it illegal, but the hospital itself officially admitted it. The hospital agreed to refrain from attenuating growth of profoundly disabled children without notifying WPAS and getting court order, thus admitting that growth attenuation should require the same caution as hysterectomy.

Moreover, the tenacious attempt by Dr. Diekema, Dr. Fost and others to generalize growth attenuation has been facing strong criticism, not just from disability community as they always want to pretend, but also from physicians, ethicists, scholars with various backgrounds. Dr. Diekema and Dr. Fost had to try to rebut 25 critical arguments last year when they wrote an article (AJOB) to respond to critics. Twenty-five arguments, and they are only the ones the authors found substantial. Their rebuttal was not very successful and most of the peer commentaries were again strongly critical. The criticism has been wide, diverse and strong. The controversy is going on. Most importantly, the Ashley case has not been fully explained or justified. Guidance can and should wait.

2)    The WG article writes that physicians and ethics committees that are not bound by the agreement with WPAS “are eager for guidance.” Maybe that’s their justification for trying to develop guidance. But where are those physicians and ethics committees? I have seen academic articles that defend the idea of growth attenuation. But I don’t remember any physicians or hospitals actually saying “we want to do it,” or “We need guidance urgently to do it.” Where are they? Where is the evidence that guidance is eagerly requested?

3)    If there should be many physicians who want to do growth attenuation, would that ethically justify the intervention at all? How many such doctors are enough for growth attenuation to be justified for general practice? There are so many physicians who want to medically assist their patients to die. How many such doctors should there be for physician-assisted suicide to be acknowledged as morally justifiable?

4)    Just suppose there should be a need to develop guidance for growth attenuation, would this particular working group be suitable for the work? About half of the members belong either to the hospital or to the university where the extremely controversial and mysterious first case occurred. Three of the members already tried to offer self-serving guidance named “Growth-Attenuation Therapy: Principles for Practice” (Pediatrics) in 2009 that would advise physicians to propose the intervention to parents as one of the treatment options when children get three. And they wrote the paper while the group discussion was still going on, for that matter. (It was accepted by the journal in October of 2008, the month the WG had their first meeting.) Dr. Diekema, who was directly involved in the first case, and Dr. Fost, both world famous advocates of the treatment now, are among them. How could such a working group have an unbiased discussion and develop fair and objective guidance?

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