February 29, 2024

“Ashley treatment” is ethical, says committee

Growth attenuation can be a solution for some children

Should parents be able to restrict the
growth of profoundly disabled children to make them easier to care for at home?
A working group convened to discuss “growth attenuation” has given
the idea a cautious Yes in the Hastings
Center Report

Debate has raged since 2006, when the first
case of the procedure came to light. This involved Ashley, a 6-year-old girl
with profound developmental disabilities who underwent growth attenuation in
Seattle Children’s Hospital at the request of her parents. Doctors and
ethicists argued that Ashley’s parents could more easily move her, dress her,
and involve her in family gatherings.

But the intervention drew strong
criticisms, particularly from disability rights and family support groups, who
compared it to involuntary sterilization and other horrific treatments
inflicted on disabled people throughout history, ostensibly for both individual
and social benefit.

The working group argued that growth
attenuation could be “an ethically acceptable decision” for profoundly disabled
children who have an IQ of less than 20 to 25. About 4,000 are born each year
every year in the US. They admitted that safeguards would be needed so that the
pool does not grow.

One concern was that “a request for growth
attenuation might actually reflect the parents’ desire to ease their own burden
rather than support the child’s interests.” However, most of the time parents
have the best interests of their child in mind, the working group argued. Growth
attenuation is even intended to make participating in family life easier.
However, the committee also observed that “the presumption that parents must
always sacrifice their own interests for the sake of the child is, practically
speaking, untenable and disrespectful of the parents”.

Not everyone agreed.

One of these was Sue Swenson,
who has a legally blind, quadriplegic, nonverbal, autistic, profoundly
intellectually disabled, 6-foot-tall, 190-pound son. “Just to be clear: he
has a good life, friends, and interests. He is loved,” said Ms Swenson.
“At 28, he is no longer a child.” She commented that there is
continuous pressure to “fix” people with disabilities, instead of accepting
them. In her opinion, growth attenuation should never be used unless it treats
an underlying disorder. “The human rights of the child as a person with
disability should limit parental rights,” she said. ~ Eurekalert,
Nov 30
; seattlepi.com,
Nov 30

Michael Cook
Ashley treatment
growth attentuation