The Ethical and Policy Implications of Limiting Growth in Children with Severe Disabilities
This symposium provided thoughtful discussion on the issue of restricting growth in children with profound cognitive disabilities, focusing on the role and limits of parental decision-making, the response of healthcare providers to such requests and the role of community stakeholders, including the disability community.
The Seattle Children’s Hospital case published in October 2006 (Gunther and Diekema, "Attenuating growth in children with profound developmental disability," 160 Arch Pediatr Adolesc Med 1013 [Oct 2006]) was presented with an opportunity for a discussion with members of the hospital ethics committee and with members of the disabilities community.
May 16, 2007
8 a.m. to 4:30 p.m.
University of Washington School of Law, Magnuson-Jackson Moot Court Room
Symposium Presented by:
- UW Disability Studies Program
- Treuman Katz Center for Pediatric Bioethics, Seattle Children’s
UW Co-sponsors:
- Center for Human Development and Disability
- Department of Bioethics and Humanities, School of Medicine
- Program on Values in Society
Archived Webcasts
Conference welcome and introduction to the symposium
Historical Assumptions Underlying Growth Attenuation in Children with Severe Disabilities
A Conversation About the Seattle Children’s Case
How did this request unfold and how did the disability community respond to the case?
- Charles Cowan, MD, Genetics and Developmental Medicine, Seattle Children’s
- Doug Diekema, MD, MPH, Treuman Katz Center for Pediatric Bioethics, Seattle Children’s
- Emily Rogers, The Arc of Washington State
- David Woodrum, MD, Treuman Katz Center for Pediatric Bioethics, Seattle Children’s (Discussant)
- Corinna Fale, People First (Discussant)
- Discussion and questions with the panelists
Philosophical Perspectives About Growth Attenuation
How do concepts such as normality, dignity, convenience, intervention and naturalness guide our evaluation of parental desires and requests to influence the growth of their children?
- Joanne Woiak, PhD, Department of History, University of Washington (Moderator)
- Anita Silvers, PhD, San Francisco State University
- Erik Parens, PhD, The Hastings Center, Garrison, NY
- Sara Goering, PhD, Department of Philosophy and Program on Values in Society, University of Washington
- Discussion and questions with the panelists
Balancing Interests: Parental Decision-Making, Doctors and the Community
How do parents and doctors negotiate healthcare decisions for their children with disabilities? How does the social context influence such decisions? What is the impact of such decisions on communities? What is the role of the disabilities community?
- Kathleen Watson, RN, PhD, Center on Human Development and Disability, University of Washington (Moderator)
- Joanne O’Neill, RN, The Arc of King County
- Ted Carter, MD, Pediatric Pulmonology, Seattle Children’s
- Alice Domurat Dreger, PhD, Northwestern University Feinberg School of Medicine
- Discussion and questions with the panelists
Institutional, Legal and Policy Responses and the Impact on Families and Communities
What are the strengths and limitations of ethics committees and judicial review/guardian ad litem in providing safeguards for growth attenuation, and what is the impact of these approaches on families and the disability community?
- Sherrie Brown, JD, EdD, Center for Human Development and Disability, University of Washington (Moderator)
- David Carlson, JD, Washington Protection and Advocacy System
- Greg Loeben, PhD, Midwestern University, Phoenix, AZ
- Ed Holen, Washington State Developmental Disabilities Council
- Discussion and questions with the panelists
Closing observations and conclusions
- Denise Dudzinski, PhD, MTS, Department of Bioethics and Humanities, University of Washington
- Paul Steven Miller, JD, Henry M. Jackson Professor of Law, Disability Studies Program, University of Washington
- Benjamin S. Wilfond, MD, Treuman Katz Center for Pediatric Bioethics, Seattle Children’s