WAKE-UP CALL: Growth-Attenuation Therapy: Principles for General Practice

Below is an abstract from a paper that has just appeared at a prestigious pediatrics journal. It alludes to the Ashley X case in the first sentence, and advocates more widespread use of the high-dose estrogen treatment used there. Read CAREFULLY, and slowly:

Publication of an account of growth attenuation with high-dose estrogen in a child with profound physical and cognitive disability brought widespread attention to a common and complex issue faced by families caring for all children, namely, the potentially negative effect of the increasing size of a child on the ability of his or her family to provide independent care, which in turn makes it more difficult for parents to keep the child in the home and involved in family activities. In this article we explore the scientific rationale for, effectiveness and safety of, and ethical considerations bearing on growth-attenuation treatment of children without profound and permanent cognitive disability. Informed responses to key clinically relevant questions are proposed. Our analysis suggests that growth attenuation is an innovative and sufficiently safe therapy that offers the possibility of an improved quality of life for ambulatory children without profound cognitive disability and their families. Pediatricians and other care providers should include discussion of these options as part of anticipatory guidance around the age of 3 years so that, if elected, potential clinically meaningful benefits of growth-attenuation therapy can be realized. Because of the publicity and debate surrounding the first reported case, ethics consultation is recommended.

Let’s go to it pediatricians! Continue reading

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Webcast of Seattle symposium on growth attenuation

The webcast of the symposium on growth attenuation, held at the Seattle Children’s Hospital in January 2009, is up on the website of the Treuman Katz Centre for Pediatric Bioethics at the hospital; Emigrl has previously posted thoughtfully and in detail on this symposium both at What Sorts here and in more detail at her Eminism blog. There are two parts to the webcast, which you can link to below, but a couple of brief things about my viewing of them first. Continue reading

The Modern Pursuit of Human Perfection: The Full Story

Below are all 13 posts from our Modern Pursuit series of posts, deriving from the public dialogue that we cosponsored with the AACL and the CACL at the University of Alberta in October 2008. The public dialogue began with some opening comments from our cosponsors, continued with short presentations from our community member panelists talking of their personal experiences, and was rounded out by a series of interchanges between audience and panel. All videos now contain transcripts (thanks to Jackie Ostrem for completing the work needed here: update 21 June, 2009: all now are closed captioned, thanks again Jackie!), and the videos are also available on YouTube. Comments on the blog on any of these posts is still welcome, but we also hope that you’ll find these of interest and use down the track for individual reflection or group discussion.

Thanks to all participants: Anna Macquarrie, Bruce Uditsky, Dick Sobsey, Wendy Macdonald, Sam Sansalone, Colleen Campbell, Anne Hughson, and Simo Vehmas. And thanks to Grant Wang and Lee Ramsdell at the Arts Resource Centre at the University of Alberta for the filming and post-production work, and John Simpson for organizational assistance.

Introduction

My doctor, my child

Living with trisomy 13, part I

Living with trisomy 13, part II

When disability meets social welfare

Bioethical reflections on disability, medicine, and family life

Decisions and dishonesty in medicine

Connecting with others

Vulnerability, trust, and confrontation

Good people in medicine and the disconnect

The denial of parenthood and selective abortion

Going underground and true choice

Disability, individual autonomy, and systematic devaluation