To the Editor: In the November–December 2010 issue, the Seattle Growth Attenuation and Ethics Working Group (“Navigating Growth Attenuation in Children with Profound Disabilities”) analyzed the arguments for and against growth attenuation in children with permanent, profound intellectual disabilities and identified conditions under which its use may be ethically acceptable. The working group’s conclusion is based on a particular construction of the issue that is not always justified. It focuses on the possibility that growth attenuation will increase children’s involvement in family social and recreational activities. The critique of the biomedical model of disability, however, highlights the potential gap between interventions on the body and social outcomes. The ongoing failure to create a registry to evaluate the validity of the argument’s central empirical claim illustrates how the persistent ethical debate may serve as a distraction from the broader goal of effectuating positive changes for children with profound disabilities and their families.
In examining the working group’s argument, it is important to note the particular way it has constructed the issue. The group focused on growth attenuation rather than on the broader “Ashley Treatment,” which also included a hysterectomy and breast bud removal. This choice brackets the potentially more inflammatory aspects of the original case. The working group also asserts, “The primary benefits sought by short stature resulting from growth attenuation relate to facilitating increased involvement in a family’s social and recreational activities that relate to mobility.” This contrasts with Daniel Gunther and Douglas Diekema’s original claim that the intervention would permit families to care for these children at home for a longer period of time, and Ashley’s parents’ contention that it would provide greater physical comfort and an appearance more congruent with her development. It is not clear whether the working group believes that the reason they offer is the most defensible or the most common among families seeking growth attenuation.
The claim that growth attenuation will increase involvement in social and recreational activities is unproven. (The alternative justification that growth attenuation and decreased size will delay out-of-home placement is not supported by the literature on parental reasons for placement.) As the working group acknowledges, because many children with profound disabilities have conditions that limit their growth, the incremental effect of administering high-dose estrogen is unclear. The critique of the biomedical model of disability emphasizes that disablement does not solely inhere in the individual’s body; it is also constructed by the person’s relationship with his or her physical and social environment, including social attitudes. Even if growth attenuation produces a statistically significant decrease in length or weight, this will not necessarily result in increased involvement in activities. Characterizing the disability critique as a claim about growth attenuation’s effect on third parties misses this important point.
While the authors correctly state that “support for growth attenuation and support for improved social service funding are not clearly at odds, nor are the two mutually exclusive,” a fundamental issue is where one devotes one’s attention. The working group, for example, reiterates the call to establish a registry of patients undergoing growth attenuation. Such research is essential to test the hypothesis that “treatment” with high-dose estrogen increases participation in family activities. In spite of calls for research since 2006, http://www.clinicaltrials.gov does not list any growth attenuation trials. I am not sanguine that further prolonging this ethical debate will contribute to the broader goal of increasing services and resources for individuals with profound disabilities and their families.
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