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One in 1,000 children may become subjected to growth attenuationEmi's post in full is here ...
By Emi Koyama
Director Intersex Initiative
On January 23, I attended a symposium at University of Washington on the controversial “growth attenuation” treatment for children with “profound” developmental disabilities. The event was an update to the larger 2007 symposium which followed the controversy surrounding the case of Ashley, a six year old girl with severe physical and developmental disabilities, who went through a
combination of hormonal treatment to stop (or attenuate) further growth, hysterectomy (which the hospital performed without a legally required judicial review), and double mastectomy (which physicians called “breast bud removal”
because she was pre-pubertal).
Since the last symposium, the University and its Seattle Children’s Hospital gathered a Working Group made up of doctors, medical ethicists, legal scholars, disability theorists, and at least one parent of a child with developmental disability to explore whether or not growth attenuation should be offered in the future, and if so under what circumstances. While members of Working Group started out with divergent views on growth attenuation therapy, they were able to come to some moral compromises, according to University of Washington pediatrician and ethicist Benjamin Wilfond. Among other things, most Working Group members agreed that, regardless of how they may felt individually about growth attenuation, it was morally and ethically acceptable if parents of “profoundly” disabled children request it.
Emi Koyama (emigrl) is the director of Intersex Initiative, a Portland, Oregon national advocacy organization for people born with intersex conditions, or disorders of sex development. She is also a board member of Bridges to Independence, which provides community inclusion support and other services to adults with developmental disabilities.
A more detailed version of this report can be found on her personal blog, along with her report on the 2007 symposium.