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"Boys will be boys" and "nature trumps nurture" were two of the cliché expressions echoed throughout the media as they reported the latest findings by Johns Hopkins researchers (and intersex allies) William G. Reiner and John P. Gearhart on genetic males assigned as females at birth due to cloacal exstrophy. "Cloacal exstrophy" is a rare medical condition in which the development of lower abdominal wall structures is incomplete, causing a portion of the child's intestines to be exposed outside of the body. It can occur in both genetic males as well as females, but gender assignment becomes a concern in the case of genetic males with cloacal exstrophy, where the penis is short, absent, or split in half. Over the past 25 years, it was standard practice for these genetic males to be assigned female sex, with corresponding genital "reconstructive" surgeries.
In the paper published in the January 22, 2004 issue of The New England Journal of Medicine Reiner and Gearhart studied sixteen genetic males who had gone through Johns Hopkins' cloacal exstrophy clinic in the past, fourteen of whom have been assigned female; the remaining two were assigned male. Among the fourteen female-assigned patients, Reiner and Gearhart report, eight have made the switch to live as males despite their gender assignment and two more expressed identifying as males, while the two male-assigned patients remained male-identified. In addition, all sixteen patients have been found to have "moderate-to-marked interests and attitudes that were considered typical of males." Reiner and Gearhart thus conclude that reassignment of genetic and hormonal males to the female sex should be reconsidered because it may "complicate already complex neonatal conditions."
While the media went frenzy over the findings in this study, loudly proclaiming the supremacy of nature over nurture, what left untold were the severity of the condition and what children with cloacal exstrophy go through in addition to being made into a genea pig to experiment the latest, most fashionable gender theory (last I heard, biological determinism is back in style). No wonder: Johns Hopkins University's own press release describe cloacal exstrophy only as: "Cloacal exstrophy is a severe birth defect that occurs in approximately 1 in 400,000 live births. One of the most pronounced characteristics is severe phallic inadequacy, or the complete absence of a penis in genetic males." But when the child has portions of her or his intestines and bladder exposed outside of the body, which is a serious medical condition that must be treated, the "absence of a penis"--which does not pose any health risk by itself--is far from "the most pronounced" concern for the patient.
This mirrors how all intersex conditions are automatically viewed as primarily an issue of gender, often overlooking other issues that are more important to the patient. When doctors see a child with an intersex condition, or any other conditions that involve atypically formed genitalia, they see a crisis of gender: the focus of the medical intervention thus becomes making sure that the child has a stable gender identity that is consistent with the genitalia; a successful case is defined as the combination of a visually acceptable genitalia and the gender identity that matches it. What's left out are concerns for other medical impacts of the underlying hormonal or anatomical conditions that cause genitals to be formed differently, and for the patients' subjective quality of life, which is often harmed by humiliating or traumatizing medical experiences.
While we welcome the findings of Reiner and Gearhart as it will make it less likely for children to receive involuntary "sex change surgeries" in the future, how we as the society approach biological differences of the genitalia leaves a room for improvement.
Refer to Children's Hospital of Boston for more detailed information about cloacal exstrophy.
Posted by Emi on Jan 29, 2004