One of the bloggers over at the blogspot What Sorts of People posted these thoughts about the logic behind and the ethics of the mastectomy that was performed on Ashely X. It follows this earlier post called "Mastectomy, not mastectomy" that discusses the elision of a reference to the mastectomy in the original report and its later euphemization as the removal of her breast buds. Go check out both posts - the writer would appreciate your comments.
Here is an excerpt:
No six-year-old child, whether or not she has a developmental disability is considered competent to assess this risk and decide to have her breasts removed. (1) Might the parents of of a healthy, typically developing six-year-old girl be allowed to ask for and consent to a bilateral mastectomy as a means of protecting their daughter against these very real risks? (2) Has the ethics community ever addressed this issue? If so, does a child’s disability in some way change these considerations?
The answer to the first question is pretty clear. Parents would not routinely be allowed to ask for and consent to a mastectomy of their child as means of controlling a very real and substantial risk. If anyone out there knows of any exceptions to this rule, please let me know.
Secondly, the issue of prophylactic pediatric mastectomy has been addressed in the scholarly ethics community. it has been discussed in such mainstream journals as the The American Journal of Bioethics [I haven’t linked to his because it is only available to subscribers) and the Journal of Medical Ethics (UK). Surely, the ethicists that were involved in the Ashley X case would have known or could have known about these discussions and opinions. The doctors and ethicists involved in the Ashley case repeatedly pointed out that this was such a novel procedure that there was little to guide them, so presumably they actually looked for this information.
Hodges, Svoboda, and Van Howe (2002) point out that for women in the highest risk categories prophylactic mastectomy has been estimated to increase life expectancy by 2.9 to 5.3 years “For most women, however, a lifetime of disfigurement is too high a price to pay for a chance of having a few extra years of life.” There point is that if most women in the highest risk category do not choose or consent to this procedure for themselves, it is inappropriate for substitute decision maker to make this decision for another individual. They suggest that pediatric mastectomy can only be justified in the “presence of clinically verifiable disease, deformity, or injury” AND when it is “least invasive and most conservative treatment option.” This has particular relevance since one of the reasons given in the Ashley case was that her positioning belt on her wheel chair rubbed across her breasts. Perhaps a better belt would have been a bit less invasive than removing her breasts. Their conclusion is clear:
“Prophylactic mastectomy is problematic and has a number of grey areas. The best one can say is that it may be acceptable for competent adults who have given informed consent, free of any force, coercion, manipulation, or undue influence from any source. Prophylactic mastectomy cannot be sanctioned on infants or children who have not yet attained legal competence or the age of majority.” In their view, Prophylactic mastectomy of a child is a serious human rights violation.
How is it any different for a child with a severe disability? In most respects, it isn’t. One difference is the Convention on the Rights of the Child. It states (1) children with disabilities have exactly the same rights as all other children, (2) that because these children’s rights are so frequently violated, they need a higher standard of protection. While the US government hasn’t endorsed the convention, the American Academy of Pediatrics has endorsed it, so children with disabilities in the American health care system should be protected by it.
