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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 January 23, the five organizers of the Working Group presented the draft report and engaged in further discussion with the local community.

January 23, 2009
1:00 – 4:00 pm
University of Washington School of Law - Magnuson-Jackson Moot Court Room

Symposium Sponsored by:
The Simpson Center for the Humanities, University of Washington

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

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 health care
  • 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