"ASHLEY TREATMENT" IS ETHICAL, SAYS COMMITTEE
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
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;