According to Andy Rickell, chairman of SCOPE (a disability organization that supports people with cerebral palsy), “Society should adapt to accommodate disabled children, rather than modify them to fit into society.” But what if the modification is “in the best interests” of the patient? And if modification is justified, when is it too much modification? These are the questions being grappled by physicians and ethicists in regards to the case of patient Ashley X.
Ashley X presented with feeding problems shortly after birth, and was later diagnosed with brain damage. The brain damage “left her in an infant state, unable to sit up, hold a toy or talk.” In 2004, Ashley’s parents asked Dr. Daniel F. Gunther to perform a hysterectomy on Ashley, as well as remove breast tissue and initiate hormone treatments to stunt her growth. The operation sparked controversy in the medical field due to the ethical debate, as well as the fact that the operation had not been reviewed by a court. According to Ashley’s parents, they wanted to have the operation done to free Ashley from menstrual cramps, and also to keep her in a more manageable and portable size that would allow them to continue caring for her at home. So was the operation carried out for Ashley’s “best interests?” Or was it for her parents’ convenience?
Although I generally disagree with modifying children so that they “fit into society,” I believe this is one of the cases in which physical modification is justified. Through the operation, Ashley would have been free of personal discomfort from menstrual cramps, and additionally would have had the care of her family. Even if the operation was performed mainly for the parents’ convenience, Ashley would have ultimately benefited, because she would have been assured adequate care from her family members, whereas if she became too large to care for at home, she may have been admitted to an external care facility where she may or may not have received the same level of care she did at home.
Even though this case is justified, it opens a torrent of additional questions, and affects the care of all disabled children. With the occurrence of Ashley X’s operation, already other parents of disabled children have come forth and asked for procedures on their children. For example, Alison Thorpe from Billericay, Essex recently applied to have a hysterectomy on her 15-year old disabled daughter Katie. Additionally, physicians who carry out the operations are being criticized for doing what they had believed to be “in the best interests” of the patient. Shortly after the controversial debate regarding Ashley X’s case, Dr. Gunther, the surgeon that performed the operation on Ashley, committed suicide. Although Dr. Gunther’s motives for suicide are not clear, one cannot help but wonder how large a role the criticism of his actions as a physician played in his decision to take his own life.
As discussed in class, happiness is relative. However, benefits are a slightly more objective measurement of the justification of operations such as the one Ashley X underwent. In Ashley’s case I believe Dr. Gunther acted on the correct decision—a choice that helped not only Ashley but her parents as well. But when exploring physical modifications, one has to stop and ask, where is the line drawn between modification for convenience and modification for benefit?
Articles:
http://www.msnbc.msn.com/id/21225569/
http://www.guardian.co.uk/news/2007/oct/08/medicineandhealth.uknews
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The question of whether or not it is ethical to force children to “fit into society” isn’t really even relevant to Ashley X’s case. I would certainly agree with your statement that modifying children to homogenize them with the rest of society is wrong, speaking genetically. But take a step back and you will realize, at least from a social perspective, that all your parents have ever done is allow you to fit into society. They encouraged (made) you take piano lessons and play sports, not to mention dress a certain way. And even beyond that, most children yearn to fit into society of their own volition and achieve this goal by getting the same Thomas the Tank Engine or Barbie backpack and Superman lunch box, not to mention all of that sweet Power Rangers paraphernalia, as everyone else.
In Ashley’s case, however, although modification was certainly the issue, it was not for the sake of helping her to fit into society. It was, one might say, intended to enable her to “function” better within the private community of her own family, but I doubt that she had much contact with society at large on a regular basis at all, besides doctor’s visits and the like.
I applaud Ashley’s parents’ motive for wanting to save the child from the discomfort of menstrual cramps and other “growing pains,” as it were. There is also no question that the operation to remove Ashley’s uterus, breast tissue and the hormone therapy that was administered to her was also for the benefit of the parents. Because, despite Ashley’s terrible condition, her parents still wanted to take care of her, it was not unethical to “modify” her to facilitate this process because it truly was in Ashley’s best interests as well.
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