Intersex Peer Support - Bodies Like Ours

Kishka-Kamari Ford, Yale Law School, J.D. 2001 examines case law and how it could be applied to non-consensual genital surgery on infants in this groundbreaking legal note. 19 Yale L. & Pol'y Rev. 469, 2001 Yale Law And Policy Review (below)

First Do No Harm

Copyright (c) 2001 Yale Law & Policy Review

Yale Law & Policy Review 2001

19 Yale L. & Pol'y Rev. 469

NOTE: "First, Do No Harm" - The Fiction of Legal Parental Consent to

Genital-Normalizing Surgery on Intersexed Infants

Kishka-Kamari Ford, Yale Law School, J.D. 2001.

[*469]

Medical professionals recognize the Latin mantra Primum, non nocere, "First, do no harm," as the first principle of medicine. n1 Yet, between one hundred and two hundred times a year in America, n2 pediatric surgeons do harm when they surgically "correct" the ambiguous genitalia of intersexed infants. These surgeries, which I call "genital-normalizing surgeries," are unjustifiably performed on an emergency basis and supported only by questionable science.

For at least two intersex conditions - clitoromegaly (large clitoris) and

micropenis (small penis) - both the diagnosis of the condition and the ultimate result of the surgery are based on subjective notions of what doctors, parents, and society believe to be "normal-looking" genitals. The benefits of genital-normalizing surgery have yet to be documented. The physically and psychologically harmful effects have been all but ignored despite the outraged cries of the procedures' victims.

This Note exposes these surgeries as lacking legally necessary informed

consent. Part I provides background information about the current medical

diagnosis and treatment of intersexed infants in America. The scientific roots

of the current model of treatment of intersexed infants are identified, and its

principle assertions are critiqued. Part II reviews the doctrine of informed

consent to medical treatment and considers whether the emergency exception to this doctrine can reasonably be applied to the birth of an intersexed infant. After consideration of the emergency exception to the general requirement of informed consent, this section discusses the legal fiction of parental consent to medical treatment for minor children. Part III analyzes the current model of treatment of intersexed infants to determine whether or not it can fairly be characterized as "experimental" treatment and thus outside of the bounds of that to which the parents of an intersexed infant can legally consent.

[*470]

I. The Diagnosis and Treatment of Intersexed Infants

Those born with genitalia displaying characteristics of both the male and

female genders (so-called "ambiguous" genitalia) are commonly referred to as "intersexed." n3 Despite the secrecy surrounding the diagnosis and treatment of intersexuality, the birth of an intersexed infant is actually a frequent occurrence. Although an accurate quantification of the frequency of

intersexuality is very much dependent upon the physician's subjective

determination of what counts as "ambiguous" in the appearance of an infant's genitalia, n4 most experts conservatively estimate that 1 in 2,000 babies born alive in America have ambiguous genitalia. n5 The American Association of Pediatrics concurs that ambiguous genitalia rank among the "common childhood problems." n6

A medical diagnosis of most intersex conditions is characterized by a

newborn's visibly ambiguous genitalia and focuses on the size, shape, and

cosmetic appearance of the organ that usually develops into a clitoris for girls or a penis for boys. n7 Examples of such conditions are "clitoromegaly," "micropenis," and "hypospadias." Some conditions can be clearly diagnosed. For example, hypospadias is plainly characterized by a urethral meatus (opening of the urethra) which is located somewhere along the shaft of the penis instead of at its usual location on the tip. n8 Other conditions are less distinct. For example, clitoromegaly is defined as the occurrence of an "abnormally large" clitoris on an infant girl, while micropenis is defined as the occurrence of an "abnormally small" penis on an infant boy.

The Current Model of Treatment of Intersexed Infants

Clitoromegaly and micropenis are almost always diagnosed at birth and [*471]

immediately addressed with surgery. n9 The model of treatment of intersexedinfants was established a half-century ago by Johns Hopkins Sexologist John Money and his colleagues. n10 This treatment model, which is currently upheld as the official policy of the American Academy of Pediatrics, n11 is grounded in two principle assertions. First, that because infants are born psychosexually neutral at birth, they can be transformed into either gender as long as their sexual anatomy can be surgically altered before the age of two to believably conform to that gender. n12 Secondly, that "normal-looking" genitals are critical for an infant's healthy psychosexual development. n13 These two assertions are mutually dependent to the extent that performance of genital-normalizing surgery to establish the second assertion depends upon the truth of the first assertion. In line with these two assertions, the birth of an intersexed infant is treated as an emergency requiring immediate gender assignment and genital-normalizing surgery. n14

Doctors employ a disturbingly unscientific methodology to assign a gender to an infant with micropenis or clitoromegaly. In following John Money's theory that "the presence or absence of the penis [is] the critical anatomical factor," n15 this methodology focuses on the size of the infant's phallus. The assignment of gender for infants with micropenis or clitoromegaly is made with two more principle assertions in mind. First, genetic males (those with XY genes) must have adequately-sized penises and no vagina if they are to be assigned the male gender. n16 Secondly, genetic females (those with XX genes) should always be assigned to the female gender and surgically altered to look as much like normal girls as possible (that is, without abnormally large clitorises). n17 A genetic male newborn's penis is currently deemed "adequate" if it is no less than 2.5 centimeters long when stretched. n18 A genetic female's clitoris is deemed "too large" if it exceeds 1.0 centimeter at birth. n19 According to Alice Domurat Dreger, author of "Ambiguous Sex" - or Ambivalent Medicine? Ethical Issues in the Treatment of Intersexuality, "surgeons seem to demand far more for a penis to count as "successful' than for a vagina to count as such." n20 The default gender is therefore always female because it is the easiest gender [*472] to create surgically. Domurat Dreger finds that "for a constructed vagina to be considered acceptable by surgeons specializing in intersexuality, it basically just has to be a hole big enough to fit a typical-sized penis. It is not required to be self-lubricating or even to be at all sensitive." n21

The principle assertions that dictate genital-normalizing surgery lack a

proper scientific foundation. Even the case on which John Money and his

colleagues rely to justify current gender-normalizing practices is of ambiguous result. The test subject of that case, often referred to as the "John/Joan" case, n22 has recently come forward to challenge the apparent success of the experiment.

The John/Joan case was the story of David Reimer ("John"), one of a set of

infant male twins whose penis was severely burned beyond repair during

circumcision. Faced with the tragic destruction of their infant boy's penis,

John's parents sought the advice of John Money. Money recommended that John be surgically reassigned and reconstructed as a baby girl. This decision was motivated by the fear that, as a man without a penis, "[John] will be unable to consummate marriage or have normal heterosexual relations; he will have to recognize that he is incomplete, physically defective, and that he must live apart." n23 Doctors "completed" John by removing his traumatized penis, fashioning a vulva out of his scrotum, and sending him home as "Joan."

John Money followed Joan's progress over a period of years and eventually

concluded that "[Joan's] record to date offers convincing evidence that the

gender identity gate is open at birth for a normal child no less than for one

born with unfinished sex organs... and that it stays open at least for something over a year after birth." n24 The "successful" John to Joan sex re-assignment was hailed for decades as proof that nurture, rather than nature, defines a person's sexual identity such that any infant can be surgically altered to fit either gender as long as surgery is performed early. n25 But recently, the real outcome of John Money's experiment was revealed by John himself.

In 1994, Milton Diamond, Professor of Anatomy and Reproductive Biology, re-opened the John/Joan case and interviewed John about his experiences as "Joan." n26 Milton Diamond reports that John is now in his thirties, living as a man, and married to a woman whose children he adopted (having himself been rendered infertile by the surgical removal of his testicles). n27 He agreed to [*473] speak to Milton Diamond because he "strongly desires his case history be made available to the medical community to reduce the likelihood of others having his psychic trauma." n28

John and his mother report that Joan rejected the assigned female gender

almost immediately. n29 John's mother even remembers Joan trying to tear off he dress on the way home from surgery - "I think he knew it was a dress and that it was for girls and he wasn't a girl." n30 His parents report that they are "guilt ridden" about having subjected their son to this experiment. n31

Milton Diamond reports that "Joan's realization that she was not a girl

jelled between ages 9 and 11 years." n32 Joan remembers saving her allowance to secretly buy toys typically associated with boys and often trying to stand to urinate despite the absence of a penis. n33 By the age of twelve Joan often refused to take the female hormones prescribed to help develop a female body. n34 She was appalled by her development of breasts and adamantly refused to wear a bra. n35 She was repeatedly terrorized by female schoolmates both for her masculine-appearance and tomboyish mannerisms. n36

By age 14, Joan demanded answers of her father and was finally made aware of the gender reassignment. John remembers that after that conversation "all of a sudden everything clicked. For the first time things made sense and I understood who and what I was." n37 Joan immediately reclaimed the male gender and became John again. From age 14 until the present, John has experienced a long, hard course of male hormonal treatments, mastectomies, and penile reconstruction surgeries. His mutilated genitals still appear far from normal and are barely functional, yet John feels every bit a man. His final recollections on his experience are profound:

Doctor ... said, it's gonna be tough, you're going to be picked on, you're

going to be very alone, you're not gonna find anybody unless you have vaginal surgery and live as a female. And I thought to myself, you know I wasn't very old at the time but it dawned on me that these people gotta be pretty shallow if that's the only thing they think I've got going for me; that the only reason why people get married and have children and have a productive life is because of what they have between their legs ... If that's all they think of me, that they justify my worth by what I have between my legs, then I gotta be a complete loser. n38

John Money's "proof" of his theories about the flexibility of gender was

[*474] based only on the feigned success of the John/Joan case. n39

Furthermore, John Money was virtually the only scientist to put forth any

guidelines for the management of the intersexed. n40 Milton Diamond has

concluded after his reopening of the John/Joan case that "there is no support for the postulates that individuals are psychosexually neutral at birth or that healthy psychosexual development is dependent upon the appearance of the genitals." n41 David Reimer's broken silence proves that "Money's hypothesis remains a mere hypothesis to this day." n42

Because those who follow John Money's model of treatment still regard the

birth of an intersexed child as a medical emergency, American courts have never considered the requirement of legal consent in genital-normalizing surgery. n43 The classification of genital-normalizing surgery as an emergency is a mistake and has resulted in disastrous outcomes. No data has supported the contention that such surgery is beneficial. On the contrary, available evidence reveals that genital-normalizing surgery causes substantial and unreasonable harm to infant subjects. Furthermore, an analysis of the questionable theoretical bases for the current model of treatment and the coercive behavior of surgeons who recommend genital-normalizing surgery reveals that the parents of intersexed infants are impeded from giving legal informed consent on their behalf.