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;