Growth, Interrupted: Nontherapeutic Growth Attenuation, Parental Medical Decision Making, and the Profoundly Developmentally Disabled Child’s Right to Bodily Integrity

Should parents of a profoundly developmentally disabled child be permitted to permanently terminate their child’s healthy bodily development in order to arguably increase the child’s quality of life? While such a procedure may sound like something out of science fiction, a highly publicized medical journal article released in 2006 described the case of Ashley X, a profoundly developmentally disabled child who received high-dose hormone treatment—along with a mastectomy and a hysterectomy—to permanently stunt her growth and allegedly increase her quality of life. Though the authors of the article presented this type of nontherapeutic growth attenuation as a viable medical option for profoundly disabled children, critics from all over the world characterized the procedure—which came to be known as the “Ashley Treatment”—as a grave and unacceptable human rights violation. Nonetheless, the Ashley Treatment has also been met with support from some, most notably the parents of profoundly disabled children, many of whom have expressed a desire for their own children to undergo similar procedures. This Note explores the question of whether parents should be permitted to choose such interventions on behalf of a child from the perspective of the child’s rights, specifically, the child’s fundamental right to bodily integrity. Following a brief description of the case of Ashley X and the ensuing controversy, the author describes the right to bodily integrity, including its origins, its modern constitutional status, and its application to profoundly disabled children. The author then discusses the general presumption of parental authority to make medical decisions on behalf of children, and the parens patriae power of the courts to intervene in parental medical decision making to protect a child’s rights and promote the best interests of the child. Finally, the author applies the preceding analysis to the Ashley Treatment and similar nontherapeutic, growth-attenuating interventions, concluding that judicial review should be invoked whenever a parent seeks this type of intervention on behalf of a child and explaining that a court rigorously applying the best interests standard should rarely, if ever, find nontherapeutic growth attenuation to be in the best interests of the profoundly disabled child, because the magnitude of harm threatened by permanently terminating the child’s healthy physical development—thus, severely and irreversibly violating the child’s right to bodily integrity—ultimately outweighs any purported benefits.

The full text of this Note is available to download as a PDF.