Below is an abstract from a paper that has just appeared at a prestigious pediatrics journal. It alludes to the Ashley X case in the first sentence, and advocates more widespread use of the high-dose estrogen treatment used there. Read CAREFULLY, and slowly:
Publication of an account of growth attenuation with high-dose estrogen in a child with profound physical and cognitive disability brought widespread attention to a common and complex issue faced by families caring for all children, namely, the potentially negative effect of the increasing size of a child on the ability of his or her family to provide independent care, which in turn makes it more difficult for parents to keep the child in the home and involved in family activities. In this article we explore the scientific rationale for, effectiveness and safety of, and ethical considerations bearing on growth-attenuation treatment of children without profound and permanent cognitive disability. Informed responses to key clinically relevant questions are proposed. Our analysis suggests that growth attenuation is an innovative and sufficiently safe therapy that offers the possibility of an improved quality of life for ambulatory children without profound cognitive disability and their families. Pediatricians and other care providers should include discussion of these options as part of anticipatory guidance around the age of 3 years so that, if elected, potential clinically meaningful benefits of growth-attenuation therapy can be realized. Because of the publicity and debate surrounding the first reported case, ethics consultation is recommended.
Let’s go to it pediatricians!
Ok, so this isn’t quite the title and abstract that has appeared. But it differs in minimal ways from one that has in PEDIATRICS Vol. 123 No. 6 June 2009, pp. 1556-1561 as a special article. Namely:
- “General Practice” for “Practice” in the title (ok: “WAKE-UP CALL” was added as well)
- “all” for “similarly affected”
- “without” for “with”
- “ambulatory children without” for “nonambulatory children with”
I have bolded all of these in the abstract so you can see how minimal the changes are. The original abstract for the paper, which has just been published, can be found here.
My guess is that the kind of widespread intervention that is being advocated in the actual paper–restricted to “nonambulatory children with profound cognitive disabilities”, but still covering many thousands of children in the US alone–won’t cause that much of an eyeblink. But could this be said of the description above? What does this tell us about how “profound cognitive disability” (or is it the “nonambulatory” bit here)?
On the lack of an eyeblink: one response that I’ve heard in conversation on the Ashley X case: “Sounds ok. They’re just retards, aren’t they”. I wish I were making up this response, and not simply reporting it. I also wish that I could see more of a difference between that response and the more sophisticated justifications for advocating growth attenuation treatment for children “with profound cognitive disabilities”, as opposed to all children, except for tone and what passes for responsible, polite communicative norms.
My only remaining real disappointment with the abstract (and I suspect, the paper itself) is that it doesn’t openly advocate both pediatric mastectomy (aka “breast bud removal”) and hysterectomy as treatments for all children [“with profound cognitive disabilities”], part of the overall procedures performed on Ashley. Parents facing problems that these treatments would solve should feel let down by these advocates for medical progress! Maybe the more explicitly illegal nature of these interventions has given them a sense of caution. For now.
h/t to The Ashley X blog for drawing attention to the Pediatrics paper. As noted there, two of the four authors, Diekema and Fost, have been involved fairly closely in the Ashley X treatment from the outset. Note that the paper was submitted and accepted for publication in October 2008, three months before the public symposium on the treatment at the U of Washington in Janauary 2009, which I’ve blogged about before right here.