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| A Pillow Angel |
DISCLAIMER: Unfortunately, I personally do not feel that I possess enough knowledge in ethics, or disability rights to present an academic opinion on this topic. However something in my stomach opposes it's practice, and yearns for it's denial in mainstream culture. Because of this, I feel that it is appropriate to present a plethora of information from a variety of sources (both in support and opposition) in hopes that the reader will come to the same bridge I have found and crossed on the topic.
Growth Attenuation: "is an elective medical treatment which involves administering estrogen to cause closure of the epiphyses of the bones, resulting in a reduced adult height".
Growth attenuation, now also known as "The Ashley Treatment", was widely popularized and publicized by news coverage of Ashley X, a child born in Seattle in 1997 who underwent this procedure. Beginning just after Ashley's 6th birthday, her parents opted to begin the treatment, flooding her with estrogen over a period of three years, accompanied by a hysterectomy and breast bud removal. Here is a blog for Ashley prepared from here parents. Ashley is called their "Pillow Angel" "because she always remains where she is placed, which is usually on a pillow".
Talk of this procedure consequently led to many medical and ethical disputes, none of which have be completely resolved.
OPPOSITION:
What are Ashley's rights as a child, how about as a disabled child? Need they be different?
In 2009, Alicia R. Ouellette publish an article titles :
This outlines the legal underpinnings of this controversy. Ouellette provides strong support for children's rights and presents the thoughts of the Children's Hospital's ethics committee on their decision to allow it (page 213).
APPROVAL:
In 2006, Gunther and Diekema published a scholarly article titled:
Attenuating growth in children with profound developmental disability: a new approach to an old dilemma.
which argued that:
Caring for children with profound developmental disabilities can be difficult and demanding. For nonambulatory children with severe, combined neurologic and cognitive impairment, all the necessities of life must be provided by caregivers, usually parents, and these tasks become more difficult as the child grows to adolescence and adulthood. Many parents would like to continue caring for their child with special needs at home but find it difficult to do so as the child increases in size. If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate the option of continued care in the homeOPPOSITION:
In a position statement from the American Association of Intellectual and Developmental Disabilities (aaidd), they labeled growth attenuation as "Unjustifiable Non-therapy", presenting their opposition on the terms that "We as a society should be supportive of innovative approaches to treatment, but we should also demand a thorough evaluation of potential benefits and balance these against carefully considered risks". In their statement, the aaidd announces that they strongly disagree with the Gunther and Diekema publication. The aaidd presents their statement in a response to this publication, outlining their statement with three major bullets:
"We offer this updated policy statement with a brief review of their proposals, followed by three main arguments against adopting them as policy".
- The first argument deals with the lack of solid evidence to support their position
- The second argument deals with the way in which they have inappropriately framed their ethical arguments within the current bioethical standards
- The third argument addresses the larger issue of idea ethics and respect for autonomy related to individuals with IDD.
APPROVAL:
Here is a similar case to Ashley X, a child from New Zealand named Charley.
Charley girl
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