I explore the ethics of altering the body of a child with severe cognitive disabilities in such a way that keeps the child “forever small.” The parents of Ashley, a girl of six with severe cognitive and developmental disabilities, in collaboration with her physicians and the Hospital Ethics Committee, chose to administer growth hormones that would inhibit her growth. They also decided to remove her uterus and breast buds, assuring that she would not go through the discomfort of menstruation and (...) would not grow breasts. In this way she would stay “forever small” and be able to be carried and handled by family members. They claimed that doing this would ensure that she would be able to be part of the family and of family activities and to have familial care. But the procedure has raised thorny ethical questions. I wish to explore these questions philosophically by bringing to bear my own experiences as a mother of a grown daughter with severe cognitive impairments. (shrink)

Abstract:What is in the best interests of a child, and could that ever include interventions that we might regard as prima facie detrimental to a child’s physical well-being? This question is raised a fortiori by growth attenuation treatments in children with severe neurological disorders causing extreme developmental delay. I argue that two principles that provide guidance in generating a conception of best interests for each individual child yield the right results in such cases. The principles are as follows: thepotentiality principle, (...) whereby every child should be able to develop its potential and is entitled to receive certain help in doing so, and theprinciple of psychosomatic harmony, whereby every human being is entitled to treatment that is appropriate to or enables a life in which mind and body are in tune with each other. These principles indicate a certain response to what we can call Ashley-type cases and admit certain caveats. (shrink)

To mitigate animal suffering under industrial farming conditions, biotechnology companies are pursuing the development of genetically disenhanced animals. Recent advances in gene editing biotechnology have brought this to reality. In one of the first discussions of the ethics of disenhancement, Thompson argued that it is hard to find compelling reasons to oppose it. We offer an argument against disenhancement that draws upon parallels with human disenhancement, ecofeminism’s concern with the “logic of domination,” and a relational ethic that seeks to preserve (...) a meaningful relationship between farmers and their animals. In addition, we respond to two arguments in favor of animal disenhancement—one grounded in the non-identity problem and one that argues disenhancement is the best we can do to protect animal well-being right now. We argue that animal disenhancement does not address the fundamental issue of oppression of animals in the context of contemporary animal agriculture. Therefore, we conclude that animal disenhancement is not nearly as valuable as it might appear initially. (shrink)

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

Life-sustaining treatment is sometimes withdrawn or withheld from critically ill newborn infants with poor prognosis. Guidelines relating to such decisions place emphasis on the best interests of the infant. However, in practice, parental views and parental interests are often taken into consideration.In this paper I draw on the example of newborn infants with severe muscle weakness (for example spinal muscular atrophy). I provide two arguments that parental interests should be given some weight in decisions about treatment, and that they should (...) be given somewhat more weight in decisions about newborns than for older children. Firstly, the interests of the infant and of parents intersect, and are hard to separate. Parents’ views about treatment may be relevant to an assessment of the infant’s interests, and they may also affect those interests. Secondly, the interests of the infant in her future are relatively reduced by her developmental immaturity. In some situations parents’ welfare interests outweigh those of the infant. However, I argue that this would not justify treatment limitation except in the setting of severe impairment. (shrink)

Two new documents from the Committee on Bioethics of the American Academy of Pediatrics expand the terrain for parental decision making, suggesting that pediatricians may override only those parental requests that cross a harm threshold. These new documents introduce a broader set of considerations in favor of parental authority in pediatric care than previous AAP documents have embraced. While we find this to be a positive move, we argue that the 2016 AAP positions actually understate the importance of informed and (...) voluntary parental involvement in pediatric decision making. This article provides a more expansive account of the value of parental permission. In particular, we suggest that an expansive role for parental permission may reveal facts and values relevant to their child's treatment, encourage resistance to suboptimal default practices, improve adherence to treatment, nurture children's autonomy, and promote the interests of other family members. (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)

Abstract:The “Ashley treatment” has provoked much debate and remains ethically controversial. Given that more children are being referred for such treatment, there remains a need to provide advice to clinicians and ethics committees regarding how to respond to such requests. This article contends that there is one particularly important gap in the existing literature about growth attenuation therapy (GAT) (one aspect of the Ashley treatment): the views of parents of children with profound cognitive impairment (PCI) remain significantly underrepresented. The article (...) attempts to redress this balance by analyzing published accounts both from parents of children who have received GAT and from parents who oppose treatment. Using these accounts, important points are illuminated regarding how parents characterize benefits and harms, and their responsibilities as surrogate decisionmakers. This analysis could contribute to decisionmaking about future requests for GAT and might also have wider relevance to healthcare decisionmaking for children with PCI. (shrink)

This issue’s “Legal Briefing” column covers recent legal developments involving institutional healthcare ethics committees. This topic has been the subject of recent articles in JCE. Healthcare ethics committees have also recently been the subject of significant public policy attention. Disturbingly, Bobby Schindler and others have described ethics committees as “death panels.” But most of the recent attention has been positive. Over the past several months, legislatures and courts have expanded the use of ethics committees and clarified their roles concerning both (...) end-of-life treatment and other issues. These developments are usefully grouped into the following eight categories: 1. Existence and availability2. Membership and composition3. Operating procedures4. Advisory roles5. Decision-making and gate-keeping roles6. Confidentiality7. Immunity8. Litigation and court cases. (shrink)

(2010). Ashley's Interests Were Not Violated Because She Does Not Have the Necessary Interests. The American Journal of Bioethics: Vol. 10, No. 1, pp. 52-54.