Saturday, October 11, 2003

Separation of Egyptian conjoined twins begins in Dallas today.

Excellent article in this morning's Dallas Morning News by Laura Beil about the ethics of performing surgery to separate two Eqyptian brothers who are joined at the tops of their heads. As co-chair of the ethics committee at Children's Medical Center Dallas, where the separation is being performed, I have given lengthy interviews to a lot of reporters about the ethics of separation and the process that we went through at Children's, and Laura's piece is the only one I've seen (so far) that has attempted to lay out the ethical analysis. The article also quotes Prof. Adrienne Asch of Wellesley College, who makes a valid point about society's culturally determined notions of what is "normal":
The surgeons know there are those who will take exception with the decision to operate. One expert who disagrees is Adrienne Asch, a professor of reproduction and bioethics issues at Wellesley College in Massachusetts.

Dr. Asch is disturbed by the drive to separate conjoined twins because it is usually based on the sense that being conjoined is not a "normal" way to live. But what does normal mean? Does it mean average, or outside statistical boundaries, or desirable? Star athletes and Nobel Prize winners have outstanding qualities that are not considered normal, she pointed out. "We think of some non-normal things as desirable," she said.

People live good lives in a variety of circumstances, and it is not for others to decide whether their circumstances are a burden. To ask whether two conjoined brothers should be separate, she said, is almost akin to asking a black person whether they should be white, or a woman whether she would be better off as a man.

"I don't even like the word normal," she said.

If society considered it acceptable to be conjoined, being attached to your brother or sister would be an unusual but perfectly legitimate way to live, she said. The biggest disability facing these twins, is that society considers it strange. "That's the principal impairment of being conjoined," she said.
I am not so sure that stigmatization is the biggest impairment facing a child with a sibling who is his size and weight attached to the top of his head, or that with these brothers we are dealing with a physical condition that would be considered "normal" in other societies but not here. But I do agree that "normal" is a loaded term that is not particularly helpful in resolving the question whether to separate or leave together conjoined twins.
posted by tommayo, 11:35 AM

Health care law (including public health law, medical ethics, and life sciences), with digressions into constitutional law, poetry, and other things that matter