The Ashley Case: The Public Response and Policy Implications

Shortly after I moved to the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital in July 2006, my colleague, Doug Diekema, mentioned that he was publishing a paper that might generate controversy. The paper addressed questions about the appropriateness of interventions to limit the final adult height of a child with profound developmental disabilities. Although published in October 2006, the paper received limited public attention until January 2007, when the child's parents launched a blog.¹ The Ashley case and the public response to it illuminate a number of important topics. Here I want to discuss the public discourse related to bioethics, whether parental decisions to attenuate growth are appropriate, and the role of ethics committees and courts to oversee parental decisions.

The Public Discourse

One issue highlighted by the Ashley case is that media accounts can be misleading, and the facts can be difficult to ascertain. The term "growth attenuation" referred to several standard estrogen contraceptive patches being used together to accelerate puberty and close the long bones' epiphyseal growth plates. The child's height plateaued at about four feet, six inches. However, some public accounts showed pictures of hypodermic needles, and others discussed surgery to fuse bones. There were descriptions of her being "frozen," resulting in questions about the feasibility of "thawing" her. Such descriptions might give the false impression that Ashley would actually stop aging.

A second point that the case highlighted is that those not directly involved in a case can have difficulty fully appreciating the thought processes of the parents, clinicians, and ethics committee. There is certainly value in reevaluating their choices, but we must appreciate that those looking in from outside may have limited insight into the particulars and nuance of the decision. Further, even those involved in the case may struggle to fully describe their thinking at the time. The medical journal article and the parents' description were published almost three years later. They may be based on fading memories and after-the-fact analysis. These observations point to the need for careful consideration in reaction to public disclosures about difficult cases.

Third, gauging public opinion from media accounts can be difficult. The headlines and the majority of the coverage articulated a strong reaction about the case, but whether that reaction represented a broad social consensus or simply vocal expression of a more narrowly held view was not clear.

To provide a venue for more engaged public deliberation, the University of Washington Disability Studies Program and the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital sponsored a public symposium in May 2007 attended by 150 people with a diverse range of backgrounds, experience, and views. Some parents at the symposium said that in cases like this one, limiting the child's final adult height (and weight) would be desirable because it would maximize the child's opportunity to participate in family activities. Others articulated concerns about how society fails both to respect the value of people with disabilities and to embrace them or their needs. Growth attenuation stimulates worries within the context of these social policies and attitudes. The symposium helped air these views; still, one conference cannot support the sustained engagement and dialogue necessary to identify areas of common ground and spell out the points of disagreement about the ethical and policy issues.

Parental Decisions to Attenuate Growth

Growth attenuation uniquely contrasts with pediatrics' usual goal of maximizing growth. Of course, growth maximization is not completely uncontested—witness differing views about the use of growth hormone to increase final adult height. But growth attenuation does raise the question of whether comparatively short stature may sometimes be advantageous. One context in which it might be is when the individual has "profound developmental disability"—that is, the individual's cognitive functioning is expected to remain at less than the equivalent of a one year old, and the individual will always be dependent on others to care for her.²

Growth attenuation focuses our thinking on the appropriateness of using medical and surgical interventions to address primarily social issues. The use of medications and behavioral...