Growth Attenuation Therapy: Ongoing Ethical and Practical Challenges 20 Years Post Ashley

Abstract

Since publication of the "Ashley Case" in 2006, few rigorous clinical or research reports have elucidated the benefits, risks, outcomes, and experiences of children with severe neurodevelopmental disorders treated with Growth Attenuation Therapy (GAT). GAT remains available, however, with at least one institution publicly discussing its ongoing program. This paper describes ethics consultations provided for two separate GAT requests (hormonal treatment only) at one institution, both from parents who independently learned of the treatment elsewhere. We detail these comprehensive consultations, and subsequent multistakeholder deliberations undertaken to determine whether formal consultations should be required for similar future cases. We offer insights regarding processes for future potential candidates, including for addressing questions such as: Should all clinically similar children be offered GAT proactively or only upon parental request? What are the implications for access/equity? We call for further peer-reviewed scholarship to reanimate this historically stigmatized and understudied treatment.

Keywords: Growth attenuation therapy; clinical ethics consultation; disability justice; health equity; intellectual and developmental disabilities; pediatric ethics.