Growth Attenuation, Parental Choice, and the Rights of Disabled Children: Lessons from the Ashley X Case

Abstract

The case of Ashley X, a profoundly disabled child from Washington whose growth and sexual development were purposely stunted through medical and surgical treatments elected by her parents, raises important questions about the law's role in protecting children from the decisions of their parents, and about the rights of disabled children. This paper argues that the deference traditionally afforded parents in making medical decisions for their children, the very deference afforded Ashley's parents by the ethics committee that reviewed her case, is inappropriate when parents choose to alter a disabled child's body for social, not medical reasons. The magnitude of potential and actual harm, the potential conflict of interest faced by parents and the potential for abuse in cases like Ashley's support the imposition of limitations on parental choice. The paper considers the calls from the disability rights community for a moratorium on growth attenuation procedures, but concludes that third party review, like that required for involuntary commitment, sibling donation, and involuntary sterilization, is the decisionmaking model that will best protect children with disabilities.

Keywords: Growth attenuation, Ashley, children, disability, parental rights, medical deci