Prevailing philosophies about parental and other caregiver responsibilities toward children tend to be protectionist, grounded in informed benevolence in a way that countenances rather than circumvents intrusive paternalism. And among the kinds of children an adult might be called upon to parent or otherwise care for, children with disabilities figure among those for whom the strongest and snuggest shielding is supposed be deployed. In this article, we examine whether this equation of securing well-being with sheltering by protective parents and other (...) care-givers should unreflectively be adopted for disabled children. We also consider why healthcare providers might reasonably be reluctant to yield to this principle, even if parents instinctively suppose that protectionism is the parenting policy that best serves their disabled child’s interest. We contend that caregivers owe children with disabilities at least as much, and possibly more, respect for self-governance than other children need. In spite of disabled children’s vulnerability and even in view of it, we argue that they should be accorded not only welfare rights to well-being but at least a modified version of liberty rights as well. Healthcare providers are especially favorably positioned to facilitate the latter response. The main components of respectful caregiving can come into conflict with one another, but we present some priorities that advise against adopting a protectionist account of parenting rights, or at least against accepting protectionist views that focus parenting narrowly on shaping ideas about the child’s welfare. In sum, caring for a disabled child, we argue, involves more than creating conditions that will afford her contentment and comfort over the course of life. (shrink)

In 2006, a paper in the journal Archives of Pediatric and Adolescent Medicine described a novel case of growth attenuation therapy and other treatments carried out on Ashley, a severely cognitively, neurologically and physically disabled 6-year-old girl. Some of the moral arguments that have sprung up in respect of the so-called “Ashley treatment” are considered, and it is suggested that they all miss something—that the proper treatment of Ashley may have as much to do with doctors’ duties to themselves as (...) with their duties to her. It is suggested that the Ashley treatment may have been in violation of doctors’ self-regarding duties and that this possibility is worthy of further investigation. (shrink)

This paper presents the principal findings from a three-year research project funded by the US National Science Foundation on ethics of human enhancement technologies. To help untangle this ongoing debate, we have organized the discussion as a list of questions and answers, starting with background issues and moving to specific concerns, including: freedom & autonomy, health & safety, fairness & equity, societal disruption, and human dignity. Each question-and-answer pair is largely self-contained, allowing the reader to skip to those issues of (...) interest without affecting continuity. (shrink)

This paper recounts the events surrounding the case of Ashley X, a severely disabled young girl whose parents opted for oestrogen therapy, a hysterectomy and breast removal – the so-called ‘Ashley treatment’ – in order to reduce her projected adult weight and improve her quality of life. Following a description of the events leading up to the procedure itself, and the worldwide debate which ensued, the main arguments in favour and against the procedures are presented. The paper also critically engages (...) with a recent defence of the treatments presented by one of those closely involved with the case – Dr D Diekema. Finally, the recommendations of a report which criticizes procedures at the hospital in which the treatments took place are described, and it is argued that the main recommendation regarding the constitution of the Hospital Ethics Committee (HEC) is ill-thought through and is unlikely to have made any difference to the decision taken by the HEC to approve the Ashley treatments. (shrink)

There is nothing more humbling to one’s inner moral compass than to realize that you do not initially know what is right or wrong! I found myself in just such a situation after reading the above case. Much has been written, both in the professional literature and the popular media, about the “Ashley Treatment” since Gunther and Diekema published their article in 2006. It is unclear if others in the United States or around the world have, to any significant degree, (...) adopted growth attenuation therapy and/or surgical intervention for children with severe neurological compromise, but the case quoted above suggests that hospital ethics committees may also be struggling with these decisions. An informal survey of pediatric endocrinologists, mentioned in a recent article on the topic, claims that many physicians are facing this dilemma as well. (shrink)