Evaluating Growth Attenuation in Children with Profound Disabilities: Interests of the Child, Family Decision-Making and Community Concerns
In early 2007, the story of "Ashley," a 6-year-old girl with profound developmental delay, became international news. Her story sparked the public’s interest because Ashley’s parents requested that doctors use estrogen to limit her final adult height to 4'6", perform a hysterectomy, and remove her breast buds in order to improve her quality of life and ease her physical care.
An analysis of ethical issues raised by this case was published in the October 2006 issue of the Archives of Pediatric Adolescent Medicine. The article focused on the circumstances and rationale for attenuating growth. In May 2007, the University of Washington Disability Studies Program and the Treuman Katz Center for Pediatric Bioethics sponsored a public symposium to further explore the issues. Participants of the public symposium included members of the Seattle Children’s ethics committee, community disability advocates, parents and scholars. Several participants held strong, opposing views.
Some argued that limiting a child like Ashley’s final adult height (and weight) could facilitate participation in family activities, and that parents should be permitted to make such decisions for their children. Other participants argued that these treatments were not in Ashley’s interests and that her interests were not necessarily represented by her parents, her physicians or the ethics committee. Additional concerns about dignity, humanity and "changing" the individual rather than changing society were raised.
With the support of 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 further explore these issues. The working group includes people with diverse backgrounds and experiences. The working group has 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 dialogue. On January 23, 2009, the five organizers of the working group will present the draft report and engage in further discussion with the local community.
January 23, 2009
1:00 – 4:00 p.m.
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 Project Sponsors:
The Greenwall Foundation
Simpson Center for the Humanities, University of Washington
Treuman Katz Center for Pediatric Bioethics
University of Washington Disability Studies Program
The first hour will include short presentations from the working group organizers about the working group’s deliberations followed by two hours for discussion with the audience.
- Benjamin Wilfond, MD — Co-Principal Investigator; Professor and Head, Division of Bioethics, Department of Pediatrics, University of Washington School of Medicine; Director, Treuman Katz Center for Pediatric Bioethics
- Paul Steven Miller, JD — Co-Principal Investigator; Henry M. Jackson Professor of Law, University of Washington School of Law; Director, University of Washington Disability Studies Program
- Douglas Diekema, MD, MPH — Professor of Pediatrics, University of Washington School of Medicine; Director of Education, Treuman Katz Center for Pediatric Bioethics
- Denise Dudzinski, PhD, MTS — Associate Professor, Department of Bioethics and Humanities; Adjunct Assistant Professor, Family Medicine, University of Washington School of Medicine
- Sara Goering, PhD — Assistant Professor, Deptartment of Philosophy; Program on Values in Society, University of Washington
Registration Information
If you would like to participate in this free, public symposium to discuss the Growth Attenuation Working Group’s deliberations, please register online here.
There is a 200-participant limit in the Magnuson-Jackson Moot Court Room (138) at the University of Washington law school.
Alternative Viewing Options
You may also view the symposium live via satellite in Wright Auditorium at Seattle Children’s main campus, where it will be broadcast on the same day. In addition, the symposium will be viewable from this Web page live via webcast (link to be provided on the day of the symposium). An archived version of the symposium will be available several days after the symposium.