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This past weekend, UCLA's Center for Society and Genetics hosted a public symposium on "Sex, Science and Society," part of which addressed the science and ethics of intersex medical treatment. Among other things, we have been pleasantly surprised by Dr. Eric Vilain's candid and forthcoming support for the goals and positions of the intersex movement, whereas his previous comments on the topic has often been confusing or overstatements (apparently, he feels misrepresented by presses, including the communications office of his own institution).
Below is a note from moof, who attended the symposium:
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[Dr. Vilain] agreed that if there were a way [to determine one's gender identity at birth], that determination should be used only to help with gender assignment (rearing), and not to justify surgical reconstruction. He sees gender assignment and surgery as two very separate issues. Actually, Eric took a significant amount of time to talk about the patient-centered approach to treating intersex children. He said that no one has the right to say what the upper bound on clit size is.
He also said that there's a wide spectrum of phenotypes, showed pictures of intersex people's genitals (only to contrast the traditional model of treatment versus the patient-centered one), and stated that the frequency of intersex births ranges from 1/4000 to 1%, depending on who is included in the definition of "intersex." He brought up that there's controversy over clinical management of intersex cases around precise diagnosis, gender assignment, and genital surgery. He asserted that due to their own ignorance, many doctors contribute to the stigmatization of intersex children. He went on to explain what the traditional therapy is for intersex cases, citing concealment, early plastic surgery, and later exogenous hormones. Then he stressed that we have to remember that the patient in these cases is the child, not the parents, and sometimes the parents wishes may conflict with the patient's, and that informed consent is NOT obtained from the patient in these cases.
Then he mentioned ISNA and that gender should still be assigned, and that gender is probably not socially constructed so performing genital surgery won't be a successful way to force a gender upon a child. Next he showed two videos, one from ISNA (featuring clips from Hermaphrodites Speak) showing intersex people talking about their experiences, and then a contrasting training video from the American College of Surgeons that was very much in favor of the traditional treatment model.
Then Eric said something along the lines of "I've been showing you lots of genitals, but it's important to show images of intersex people, who are not just walking genitals." At that point he had up a slide of various pictures of people smiling, some with partners/families, and stated their names and that he had gotten permission from them for them to be a part of his presentation.
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In response to our follow-up email, Dr. Vilain wrote: "I am very supportive of your work in the intersex movement. There is always the risk that surgeons will use the work on gender as an argument for surgery, but they would use any arguments anyway. Gender assignment and genital surgery are two independent parameters in my mind. I don't think a possible misuse of science should block the science. There will always be someone doing the science. It might as well be someone sympathetic to the cause, who can explain what it means and avoid misinterpretations. I think that the main reasons to be against unwanted genital surgery are the absence of outcome data and the absence of consent. Helping predict gender should certainly not be used as an argument for surgery! Plus, genetics or no genetics, there will always be errors in gender assignment, because gender is just so complex."
Thanks, Dr. Vilain, for your understanding and support.
Posted by Emi on Feb 2, 2005