"It is unethical and unacceptable to perform intrusive and invasive medical procedures on a person or child with a disability simply to make the person easier to care for," said Steven Taylor, director of Syracuse University's Center on Human Policy. A hospital institutional review board should have been consulted before what amounted to a medical experiment was authorized, says Taylor.
According to Kristina Borror, a director for the federal Office for Human Research Protections -- where many complaints about Ashley's treatment have been registered -- the office does not consider the 2004 procedure to be a research case, and the situation is therefore outside of its power. Dr. Richard Molteni, medical director of the Children's Hospital and Regional Medical Center in Seattle where the procedure was performed, said that Ashley's case was not experimental and therefore did not require consultation with an institutional review board.
Ashley was rendered immobile, unable to feed herself, and mentally 3 months old by a severe brain disorder known as a static encephalopathy. In order to keep her from being too heavy to move and care for, Ashley's as-yet-unidentified parents requested a procedure that involved the purposeful stunting of her growth through a hysterectomy, the removal of her breast buds, and a regimen of estrogen treatments. Doctors say that Ashley is unlikely to grow much beyond her current 4-foot-5 frame, if at all. They theorize she would have reached a height close to 5-foot-5 if she had not undergone the procedure. The doctors also say the treatments will prevent Ashley from ever having to deal with menstruation or its symptoms, and significantly reduce her chances of breast cancer, which her parents report runs in the family.
The case has drawn attention from critics both inside and outside the United States ever since her parents detailed the treatment in an online blog last week. Feminist groups and disabled-rights groups are calling for the American Medical Association's ethics committee to investigate Ashley's case, and although Washington has no laws against forced sterilization, the state attorney general's office has said a complaint from a New Jersey disabled-rights activist is currently being assessed.
Protestors have also demanded that the AMA officially condemn the procedure, as Ashley's case was first published in the association's Archives of Pediatrics & Adolescent Medicine, although the magazine has its own independent editorial board. The AMA basically endorsed the treatment by authorizing publication of the report, says Amber Smock of Feminist Response in Disability Activism, but journal editor Dr. Frederick Rivara said the report was published in the hopes that it would cause this very debate in the scientific community.
According to Molteni, the decision to authorize the procedure was "thoroughly reviewed by a wide range of medical and surgical specialists, including neurologists, development specialists and ethicists," and the hospital is convinced the procedure was in Ashley's best interests.
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