The Ashley Case and What is Ethical?
You have probably been reading in the past day or so about Ashley. From the Website for Ashley, the following:
“Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop. Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctor’s call her condition “static encephalopathy of unknown etiology”, which means an insult to the brain of unknown origin or cause, and one that will not improve.
Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our 'Pillow Angel' since she is so sweet and stays right where we place her—usually on a pillow.”
The family decided, after research, consulting with specialists and after approval of an institutional ethics committee, to institute a series of procedures to make life more comfortable for Ashley in the future. Continuing on with the website narrative: “The “Ashley Treatment” is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley.” You must read the full website at the link above to understand the facts and the rationale for what was done and for what motivation.
Of course, this case has suddenly raised a huge amount of controversy in many areas and in one area in particular, those activists who want to encourage appropriate as well as ethical treatment for the disabled. Here is a statement released today by Not Dead Yet, a national disability rights group. Please read their statement and also Ashley’s website and hopefully comment on my blog what you think about the family’s decision if the facts and information on the website are correct (which I am assured by someone close to the case that it is). ..Maurice.
For Immediate Release:
January 6, 2007
Contacts: Diane Coleman or Stephen Drake
Not Dead Yet Statement on “Growth Attenuation” Experimentation
Not Dead Yet, a national disability rights group dealing with medical
and bioethics issues involving euthanasia, reacted today to the public
debate about the so-called “growth attenuation” invasive medical
experimentation performed on a young girl in Washington State.
These procedures rendered her sterile, prevented any sort of puberty
and will keep the girl the size she is now for the rest of her life.
“We are saddened but not surprised by the fact that this was publicized
and met with a great deal of public approval,” said Diane Coleman,
founder of Not Dead Yet. “The public is willing to sanction the murders
of disabled children by their parents, so it’s hardly surprising they would
rush to the support of parents and their medical partners in a matter like this.”
Coleman points out that the series of surgeries and drug regimens would
never have been given to a nondisabled female for any reason.
But more of these practices are threatened. When a report of the
Washington case was published in the Archives of Pediatric and
Adolescent Medicine, some so-called critics of the procedures said
the only way we can “evaluate” the outcome is to do more “research,”
which we presume to mean more experimentation on young women.
“That’s unacceptable,” said Coleman. “We simply need to call
a halt to it.”
Stephen Drake, research analyst for Not Dead Yet, is not surprised
to hear there were medical professionals willing to perform such drastic
measures on a young girl.
“As a child, I had many health problems that continued until the age
of 12,” said Drake. “By the time I was 11 or 12 I was feeling good
enough to worry about other things, like my height (Drake is 5’ 1”).
I was tired of always being the shortest guy in my class and feeling
bad around it. My parents took me to a specialist who determined
that my health issues probably had depressed my growth and
mentioned the possibility of growth hormone. My parents vetoed
the idea, since I was finally happy and healthy. They figured I didn’t
need any new unknown health risks introduced into my life.
They were right and it didn’t really take me long to see it their way.”
Not Dead Yet calls for a total ban on this procedure and similar ones,
no matter what ethics committees think of them. Ethics committees
are not a substitute for the constitutionally-guaranteed right of due
process. In fact, they often act as an end-run around those protections.
“Ethics Committees often say they strive for diversity in their membership,
but they have historically excluded representation from the disability
community about whom they are making life and death decisions,”
Not Dead Yet
7521 Madison St.
Forest Park, IL 60130