Evaluating Growth Attenuation in Children with Profound Disabilities: Interests of the Child, Family Decision-Making and Community Concerns
Supported by the Greenwall Foundation and the Simpson Center for the Humanities at the University of Washington, the 20-person Seattle Growth Attenuation and Ethics Working Group was formed to explore issues surrounding growth attenuation as a treatment option for children with profound disabilities. The working group includes people with diverse backgrounds and experiences. This working group drafted a report that aims to address this issue more fully by identifying areas of common ground and points of persistent disagreement, in order to facilitate further dialog. On Jan. 23, 2009, the five organizers of the working group presented the draft report and engaged in further discussion with the local community.
Jan. 23, 2009
1:00 to 4:00 pm
University of Washington School of Law, Magnuson-Jackson Moot Court Room
Symposium Sponsored by:
Growth Attenuation Working Group Sponsors:
- The Greenwall Foundation
- Simpson Center for the Humanities, University of Washington
- Treuman Katz Center for Pediatric Bioethics
- University of Washington Disability Studies Program
View the Growth Attenuation Symposium presentation and discussion.
Working Group and Symposium Objectives — Benjamin Wilfond, MD
- Deliberative and reflective analysis about growth attenuation
- Exploring points of persistent disagreement
- Identifying areas of consensus
Community Concerns — Sara Goering, PhD
- Devaluing people with disabilities
- Inadequacy of social resources
- Broader use
- Stigmatization
Interests of the Child — Doug Diekema, MD, MPH
- Impact of short stature on children with profound developmental disabilities
- Potential benefits
- Attenuating growth: omissions and commissions
- Amount of growth attenuation
- Dignity and respect
- Certainty of prognosis
Family Decision-Making — Denise Dudzinski, PhD, MTS
- Considering parental interests and motivations
- Respect for parental decision-making about healthcare
- Informed consent
- Oversight
Conclusions — Paul Steven Miller, JD
- Improving the lives of children with profound developmental disabilities
- Respect for contrasting views and appreciation for moral compromises
- Further research, scholarship and advocacy