Copyright (c) 2001 Yale Law & Policy Review
Yale Law & Policy Review
2001
19 Yale L. & Pol'y Rev. 469
LENGTH: 12391 words
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.
TEXT:
[*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
PAGE 2
19 Yale L. & Pol'y Rev. 469, *470
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 intersexed
infants 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
PAGE 3
19 Yale L. & Pol'y Rev. 469, *471
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 her
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
PAGE 4
19 Yale L. & Pol'y Rev. 469, *473
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.
II. The Doctrine of Informed Consent
The doctrine of informed consent is based on the legal principle of battery,
which holds that an offense to personal dignity occurs when one violates
another's bodily integrity without full and valid consent. n44 Generally, if a
doctor obtains a patient's consent to medical treatment without informing that
PAGE 5
19 Yale L. & Pol'y Rev. 469, *474
patient of the nature of the treatment or the extent of the harm that is
necessarily involved, the patient's consent is held not to be an "informed
consent." n45 Legal informed consent requires the satisfaction of three criteria
before a medical [*475] decision will be seen as legally informed. n46 First,
the decision must be informed. This requires the doctor to provide the patient
with adequate information about the proposed treatment, including its
alternatives. Second, the decision must be voluntary. This requires the doctor
to abstain from coercing or otherwise improperly influencing the patient's
decision. Third, the decision must be competent. This requires that the patient
"have an "appreciation' of the nature, extent, and probable consequence of the
conduct consented to." n47 By ensuring that the patient knowledgeably consents
to being treated by the clinician, the doctrine of informed consent serves both
to protect the patient's body from uninvited invasion and to protect the
clinician from unwanted tort liability.
The Emergency Exception to the Requirement of Informed Consent
When a doctor provides treatment necessary in a medical emergency, that
treatment is excepted from the general requirement of informed consent. n48 In
the celebrated case Schloendorff v. Society of New York Hospital, n49 Justice
Cardozo, writing for the majority, reasoned that the requirement of informed
consent is necessary "except in cases of emergency where the patient is
unconscious, and where it is necessary to operate before consent can be
obtained." n50 Since Schloendorff, courts in all jurisdictions have repeatedly
returned to Justice Cardozo's famous words and refused to find a person who
responds to a medical emergency in violation of the law. n51
Defining what exactly constitutes an "emergency" has been difficult. In
Dunham v. Wright, the Third Circuit struggled with what it described as the
"delicate balance between the right of the patient to choose the treatment he
wishes to undergo and the freedom of the physician to practice responsible and
progressive medicine without fear of frequent litigation." n52 However, two
criteria must be satisfied before a person who acts upon another person will be
said to have been responding to an emergency. First, that the person acted upon
is, or is reasonably believed to be, in immediate danger. n53 Second, that the
[*476] actor has no reason to believe that the person acted on would have
declined the action if they had been able. n54 In the specific case of minors,
the second prong of the emergency response test is dropped and courts simply
define emergency action as action "appropriate to protect the "life or health of
the child.'" n55
The practice of genital-normalizing surgery on infants does not pass either
prong of the emergency response test. First, there is nothing life-threatening
about a large clitoris or a small penis. In fact, it is conceded as medical fact
that the genitals of an intersexed infant "are not diseased and do not have to
be treated as pathological." n56 The intersexed infant is in no immediate danger
because of the size and shape of his/her penis or clitoris. In fact, the
intersexed infant is not even in future danger because of the size and shape of
his/her penis or clitoris. Secondly, recent advocacy by post-operative
intersexuals who resent the imposition of genital-normalizing surgery on them as
infants reveals that many post-operative intersexuals would have declined the
action if they were able. n57
Despite the fact that intersexuality is not a life-threatening disorder,
medical professionals have continued to treat it as an emergency by focusing not
PAGE 6
19 Yale L. & Pol'y Rev. 469, *476
on the physical dangers of ambiguous genitalia but on the psychosocial problem
of intersexuality. Unfortunately, this focus is misguided.
Science rebuts the contention of John Money and his followers that
"normal-looking" genitals are critical for an infant's healthy psychosexual
development. Research shows that most children under the age of two display no
concern about differences in the size and shape of their own genitals.
Pediatrician Janet Goodall's studies of children under the age of two reveals
that "their approach to life is totally egocentric." n58 She concludes that
"children are more involved in their own internal world than in making more than
superficially disparaging comparisons, such as something's being bigger or
smaller than is desirable." Given that genital-normalizing surgery can be
performed at any time in a person's life, and in fact may have better physical
results if performed [*477] only after the genitals are fully grown, n59 it is
difficult to justify immediate surgery to the infant on the basis of medical
necessity.
It is my contention that it is the parents and doctors of intersexed infants
who are experiencing a medical emergency, not the intersexed infant. Intersexed
genitalia make almost everyone - doctors, parents, and society as a whole -
uncomfortable. The terms "disfiguring and embarrassing," "ungainly,"
"unsightly," and "offensive" are commonly found in medical journals when
describing ambiguous genitalia. n60 In fact, medical professionals admit that it
is the psychosocial problem of intersex that makes it an emergency. n61 Doctors
act quickly not because the infant is in any medical danger, but "to spare
parents the trauma of seeing their child as intersexed each time they change the
infant's diaper." n62
The psychosocial emergency surrounding the birth of an intersexed infant is
"cultural imperative, masquerading as medical necessity." n63 As such, the
practice of genital-normalizing surgery on infants does not pass the test for
medical emergency. A medical emergency requires that the action is appropriate
to protect the life and health of the child, not the psychological welfare of
the child's parents or physicians. Because the birth of an intersexed infant
does not qualify as a medical emergency, doctors can perform genital-normalizing
surgery only with the informed consent of an infant's parents.
Parental Consent to the Medical Treatment of Their Minor Children
The underlying principles of informed consent break down when the medical
treatment of infants is at issue. Infants' underdeveloped communication and
comprehension abilities preclude appreciation of the nature, extent, and
probable consequences of a proposed treatment. Nor can they weigh its
alternatives. Therefore, infants are literally unable to give legal informed
consent for their own medical treatment. n64 So who speaks for the infant?
The infant's impediment to the traditional rule of informed consent has
[*478] been overcome by the creation of the legal fiction that a parent's
informed consent may be taken in place of the infant's. This legal fiction is
the doctrine of substituted judgement. With its history in the nineteenth
century English law of lunacy, n65 the doctrine of substituted judgement
purports to allow a third party to advocate a course of action for one
incompetent to speak for him or herself. Although the doctrine of substituted
judgement has been revised over time, n66 it still assumes that the third party
is legally able to advocate what is in the incompetent's best interests. n67
PAGE 7
19 Yale L. & Pol'y Rev. 469, *478
The doctrine of parental consent goes even one step further than the doctrine
of its roots. It does not just assume, but actually takes as fact that the
parent knows what is in the best interests of the infant. Time and again, courts
have upheld parental consent on the basis that parents, as the natural guardians
of their children, are best situated and best able to make important decisions
on their behalf. n68 Herein lies the danger of parental consent.
Louise Harmon discusses the various concerns about substitute judgement in
her article Falling Off the Vine: Legal Fictions and the Doctrine of Substituted
Judgement. n69 She finds that legal fictions become dangerous when understanding
of the inherent falsity of the statement is lost and those who are substituting
their judgement are seen as truly speaking for that person. n70 Richard W.
Garnett, in his article Why Informed Consent? Human Experimentation and the
Ethics of Autonomy, echoes these concerns by arguing that ""proxy consent' is an
oxymoron if consent truly aims at protecting self-autonomy and
self-determination." n71 Even the American Academy of Pediatrics recognizes this
danger, finding that ""proxy consent' poses serious problems for pediatric
health care providers" because "a person who consents responds based on unique
personal beliefs, values, and goals." n72
Despite the dangers inherent in the falsity of the legal fiction, in a
variety of contexts courts have continued to rely on the presumption that
parents know what is best for their infant and should be trusted to act on that
knowledge. n73 It [*479] is currently generally accepted at common law that
the informed consent of the parent is necessary for the medical treatment of the
infant. n74 A fair characterization of the breadth of the parental consent
doctrine is that "most courts ... defer to parental discretion within a broad
spectrum of situations ranging from those which are medically necessary, to
those which do not threaten the health of the child." n75
But, a parent's prerogative to consent on behalf of his or her infant is not
absolute. Rather, when the child's health and safety are at risk, the Court has
placed limitations on the use of parental discretion. For example, in Prince v.
Massachusetts, n76 the Supreme Court did not hesitate to convict a child's
guardian for breaking child labor laws and endangering the child's health and
welfare, even though the decision abridged the guardian's religious freedom. It
was in Prince that the now famous words were first declared: "Parents may be
free to become martyrs themselves. But it does not follow they are free, in
identical circumstances, to make martyrs of their children." n77 The courts have
continually returned to this argument in Prince when a parent's discretionary
decision has threatened the child's health and welfare. n78 Even in cases where
the parent's discretionary decision has been upheld, courts have been careful to
consider whether the parent's decision is really in the best interests of the
child. n79
III. Analysis of the Current Model of Treatment of Intersexed Infants
The question of what is in the best interests of the child is most often
implicated when the proposed medical treatment may be fairly characterized as
"experimental." The definition of "experimental" treatment is revealed by
reviewing cases brought by parents seeking court approval for their minor or
[*480] mentally incompetent children to become live organ donors. n80 A study
of the case law in this context reveals the criteria by which courts judge a
treatment to be experimental.
PAGE 8
19 Yale L. & Pol'y Rev. 469, *480
In the landmark case Bonner v. Moran, n81 the D.C. Circuit plainly
articulated the first criteria that must be satisfied before legal consent can
be given for a minor to participate in experimental treatment. Although Bonner
concerned the mature minor exception to the doctrine of parental consent, the
court also discussed at length the performance of experimental treatment of
minors. The issue in Bonner was whether a doctor had acted with legal consent
when he removed skin from a fifteen-year-old boy for the purpose of treating the
boy's badly burned cousin. n82 At issue was the nature of the procedures to
which the doctor subjected the minor organ donor. Over the course of two months,
during which the boy missed school, the doctor removed a tube of the boy's skin
from his arm to his waist and gave him several blood transfusions. n83 The court
noted the great degree of pain and sacrifice suffered by the boy and ultimately
held that consent given by a minor or on the minor's behalf is invalid when the
treatment is not to the benefit of the child. n84 It is important to note that
because the surgery was not for the benefit of the minor, the court demanded
both the consent of the child and his parents n85 Similar to the reasoning in
Prince, in the context of organ donation, an adult is free to make a martyr of
herself but not of her child.
The requirement of a benefit to the child is supported by other cases in the
organ donation context. For instance, in both Hart v. Brown n86and Strunk v.
Strunk, n87 courts allowed legally incompetent persons to be organ donors with
parental consent only after an independent benefit to these donors could be
established. In Hart, the Superior Court of Connecticut upheld parental consent
to a seven year-old girl's donation of a kidney to her twin sister. n88 After
hearing from the donee's doctors, psychiatrists, clergyman, and court-appointed
guardian ad litem, the court was convinced that the organ donor [*481] would
be less harmed by the loss of her kidney than by the loss of her sister. n89 The
court was also careful to make "a close, independent and objective investigation
of [the parents'] motivation and reasoning." n90 After a careful balancing of
all of the interests and risks involved, the court made what it believed to be a
beneficial decision for the organ donor. Similarly, in Strunk, the Court of
Appeals of Kentucky upheld parental consent for a twenty-seven-year-old
mentally-disabled man to donate a kidney to his brother once it was reasoned
that he would be more traumatized at the loss of his brother than at the loss of
his kidney. n91 Important to both decisions were the facts that kidney donation
is a relatively safe procedure and that a person's life expectancy is not
diminished with the removal of one kidney. n92
Conversely, the courts have refused to allow parental consent to organ
donation by their legally incompetent children when no independent benefit to
the organ donor can be established. For instance, in In re Richardson, n93 the
Louisiana Court of Appeals found the proposed psychological benefit to a
mentally disabled organ donor "highly speculative." n94 In In re Richardson, the
parents of Roy, a seventeen-year-old mentally disabled boy, sought to give
parental consent for one of Roy's kidneys to be removed and placed into his
thirty-two-year-old sister. n95 The parents' attorney argued that donating his
kidney would be in Roy's best interest because his sister might then live long
enough to take care of Roy when they died. n96 The court refused to see this
speculative possibility as a clear benefit to Roy and declined to allow the
organ transplant. n97 The Wisconsin Supreme Court reached a similar conclusion
in In re Guardianship of Pescinski n98and refused to allow an organ donation by
an incompetent donor to proceed "in the absence of real consent on his part, and
in a situation where no benefit to him has been established." n99
PAGE 9
19 Yale L. & Pol'y Rev. 469, *481
From the study of cases in the organ donation context, it becomes apparent
that in addition to the basic requirements of legal informed consent, certain
criteria must be satisfied before a parent may submit their minor to an
experimental treatment. First, if the treatment is not medically necessary for
the minor, it must not be unreasonably harmful. Second, the treatment must be to
the benefit of the minor, and not just to the benefit of the minor's parents or
other family members. The best interests of the minor are at the forefront of
the decision [*482] to permit or deny an experimental treatment. With these
criteria in mind, the arguments against allowing parental consent to
genital-normalizing surgery on their otherwise healthy intersexed infant are
strong.
The Experimental Nature of the Current Model of Treatment of Intersexed
Infants
The current model of treatment for healthy infants with micropenis or
clitoromegaly is experimental at best. n100 Part I of this Note revealed the
questionable empirical support for imposing immediate genital-normalizing
surgery on intersexed infants. This lack of reliable empirical support has led
experts in infant surgery, psychology, and ethics, as well as intersexuals
themselves, to loudly question why genital-normalizing surgery continues to be
imposed on intersexed infants. This same sentiment was articulated by Robert A.
Crouch in a volume of The Journal of Clinical Ethics entirely devoted to this
issue: "Treatment decisions for intersexed children have not been made on a
"firm scientific basis,' yet they have been made nonetheless." n101
Follow up studies are rarely conducted on infants subjected to
genital-normalizing surgery. n102 The few outcome studies that have been
completed address only the physical appearance of the post-operative genitals,
but not the psychological results for the patients. n103 This is odd considering
that the fundamental goal of genital-normalizing surgery is "to facilitate a
patient's positive psychosocial and psychosexual adjustment throughout life."
n104
There is, however, overwhelming evidence of the physical and psychological
effects of genital-normalizing surgery from post-operative intersexuals
themselves. The advent of the Internet has allowed post-operative intersexuals
to voice the negative consequences of genital-normalizing surgery and form
interest groups dedicated to preventing its harms to future intersexed infants.
n105 [*483] These advocacy groups, with some support from those within the
medical profession, criticize surgeons for not according weight to patients'
reports of negative surgical and psychosocial outcomes. n106
The collective stories of these intersexuals further corroborate evidence
that genital-normalizing surgery performed without the patient's own consent is
not beneficial. As noted by Bruce E. Wilson and William G. Reiner, experts in
pediatric medicine and psychiatry who have studied the current management of
intersex, "the recurring voices of many individuals treated in accordance with
[the current model] increasingly indicate that it just does not work the way it
is supposed to work." n107 Held to the legal standard applied to other forms of
experimental treatment on infants, the practice of genital-normalizing surgery
without the patient's consent fails both the general test for legal informed
consent and the more specific requirement of an independent benefit to the
infant.
PAGE 10
19 Yale L. & Pol'y Rev. 469, *483
The Unreasonably Harmful Results of Genital-Normalizing Surgery on Infants
An experimental treatment requires an independent benefit to the infant. Yet,
recent scholarship reveals that, for many intersexuals, genital-normalizing
surgery has resulted in deformed looking genitalia, pain, and loss of sexual
sensitivity or function. Tragically, most of the long term physical injuries
that result from genital-normalizing surgery cannot be evaluated until the
infant reaches sexual maturity and discovers problems of pain or insensitivity
at sexual arousal. n108 But most patients are lost to follow up long before they
even reach puberty.
Genital-normalizing surgery rarely results in "normal looking" genitalia.
Cheryl Chase, Executive Director of the Intersex Society of North America,
argues that "surgery is good at removing structures, like infected appendices or
localized tumors; it is much less useful for creating structures." n109 For
example, clitoromegaly is consistently addressed by removing all, or a
significant part, of an infant's clitoris. n110 To argue that a woman with no
clitoris at all has "normal" genitalia is ludicrous. And yet, "the definition of
a "successful' surgical result may well differ in the eyes of the surgeon and
the eyes of the patient." n111 Because surgeons consider the female anatomy to
play a passive role in sexuality, a sexual reassignment that results in a
functionally receptive [*484] vagina is considered successful, regardless of
the state of the clitoris. n112 The awful truth for many intersexuals is that
the deformation of post-surgery genitals is "a fact immediately obvious to
anyone who glances at the "after' photos claimed as successes." n113
But even an aesthetically pleasing result may leave an intersexual in pain or
without sexual sensitivity. Edmund G. Howe, Professor of Psychiatry and Director
of Programs in Medical Ethics, finds that many post-operative intersexuals
"report that they have less sensation in their genital area and even feel pain."
n114 Wilson and Reiner agree that "many surgeries to "reconstruct' a "normal
sized' clitoris or penis result in decreased sensation and/or function." n115
Even when genital-normalizing surgery results in aesthetically-pleasing and
functional genitals, there is always the possibility that surgeons were
altogether wrong about the future gender choice of the infant. For many
intersexed infants, genital-normalizing surgery seems to have been a guessing
game. Even when the physical results are "optimal," they are sometimes proven to
have been irreparably incorrect. David Reimer's rejection of his assigned gender
is not an isolated case. Many intersexuals end up developing sexual identities
opposite to their sexually-assigned gender, n116 reflecting the fact that, for
many people, and especially for intersexuals, "stable gender identity is often
assumed only as an adult." n117 Coping with this "gender dysphoria," as it is
termed in the medical community, n118 is very difficult for an intersexual whose
genitals of the sex with which they now identify were intentionally surgically
removed with their parents' consent.
It is hard to discuss the practice of genital-normalizing surgery without
drawing an analogy to the practice of female genital mutilation. The American
Academy of Pediatrics' vehement condemnation of female genital mutilation seems
grotesquely hypocritical considering its strong endorsement of
genital-normalizing surgery. The following are official statements by the
American Academy of Pediatrics concerning the practice of female genital
mutilation:
PAGE 11
19 Yale L. & Pol'y Rev. 469, *484
"The World Health Organization and the International Federation of Gynecology
and Obstetrics have opposed FGM as a medically unnecessary practice with
serious, potentially life-threatening complications." n119
[*485] "The American Academy of Pediatrics ... encourages its members to
.. decline performing all medically unnecessary procedures to alter female
genitalia." n120
And yet, the removal of all or part of the sexual organs of young girls done
in countries that practice female genital mutilation is functionally no
different from the surgical maneuvers performed in America to "correct"
clitoromegaly. n121 Cheryl Chase reports interviewing both Western and
third-world victims of clitorectomies and finding that "in both groups, some
women are deprived of clitoral sensation and orgasm; some retain sensation in
the clitoral stump; and some of these retain orgasmic response." n122 Beyond the
geographic location of the surgery performed, there seems little functional
difference between what is done by surgeons here and what they condemn
elsewhere.
Cheryl Chase adds that "poor surgical outcomes are not the only - or even the
primary - reason former patients feel harmed." n123 The psychological effects of
genital-normalizing surgery are perhaps the most painful of all. Alice Domurat
Dreger reports that the current model of treatment, "while designed to be
beneficent, appears in many cases to actually harm intersexed children and their
families by treating them as pathological." n124 Most intersexuals feel that
they would have been better left alone. "They contend that if they had not had
surgery, they could form just as meaningful intimate sexual relationships and
enjoy sexual sensations that would not have been diminished." n125
In her study of forty-one intersexed people, sociologist Sharon E. Preves
noted that "many who had genital surgeries emphasized that the very operations
that were intended to assuage feelings of difference only served to highlight
their stigma." n126 After conducting in-depth interviews with these intersexuals
about their life histories, Sharon E. Preves found that none of those
interviewed would have preferred to have been born non-intersexed. n127 Dr.
Suzanne Kessler's survey of college students provides evidence that many
intersexed adults would not choose gender-normalizing surgery for themselves and
express regret and anger that surgery was imposed on them as children. n128
[*486] Many intersexuals who were subjected to genital-normalizing surgery in
infancy have sought to reclaim their identity as intersexual rather than simply
male or female. n129
In fact, studies have shown that those intersexuals who escaped
genital-normalizing surgery are living normal, healthy lives. Americans can
learn a lot from the treatment of intersexuals in other cultures. Robert A.
Crouch has found that "many non-Western societies have socially available
(institutionalized) third sex/third gender categories, where the differently
sexed person has a special (or, at least, acceptable) social gender role to
play." n130 Anthropological and anecdotal evidence reveal that intersexed
infants could be left as they are born and live normal, healthy lives. But in
America, "the non-treatment of intersexed children clearly has not been a real
option." n131
In light of the relative lack of physical or psychological benefits of
PAGE 12
19 Yale L. & Pol'y Rev. 469, *486
genital-normalizing surgery, it is not surprising to find that there is heated
controversy both within and without the medical community surrounding the
continued use of this current model of treatment. n132 Alice Domurat Dreger
reports that "professional conferences, gender clinics, and the popular media
are abuzz with the controversy over how medicine and society should handle
intersex and intersexuals." n133 Intersexual support groups have proliferated on
the Internet, n134 and the Discovery Channel recently carried a one-hour
documentary on the controversy over surgical treatment of intersexuality. n135
The Impediments to Legal Parental Consent
In the midst of all of the controversy surrounding the practice of
genital-normalizing surgery, parents of intersexed infants get lost. The
questionable theoretical bases for early genital-normalizing surgery are rarely,
if ever, disclosed to the parents of intersexed infants. n136 The failure of
this disclosure, amongst other deceptions by doctors who routinely advocate
early genital-normalizing surgery, make legal informed consent to this surgery
by parents impossible. The medical community's failure to acknowledge the
questionable [*487] theoretical bases for genital-normalizing surgery preclude
satisfaction of each of the three requirements for informed consent.
Legal consent must be informed. This requires doctors to provide the parents
of intersexed infants with adequate information about the proposed
genital-normalizing surgery, including its alternatives. This information
"should include risks such as reduced sexual sensation, less than perfect
cosmetic results, and possible interferences with sexual function." n137 Also
included should be the risk that the infant ends up identifying with the other
gender as in the case of David Reimer. But, surgeons who practice
genital-normalizing surgery admit that "little factual evidence or long-term
outcome studies exist to guide choices." n138 Without the proper data, the
potential risks of genital-normalizing surgery cannot be communicated to the
parents of intersexed infants.
Unfortunately, even when doctors have relevant information, they "often do
not tell intersexuals and their parents all that [they] know." n139 This leads
to the tainting of the second requirement for informed consent: that the
decision to give legal consent must be voluntary. Voluntariness of the decision
requires the doctor to guard against coercing or otherwise improperly
influencing the parents' decision. Yet, Alice Domurat Dreger reports that
"clinicians treating intersex individuals may be far more concerned with strict
definitions of genital normality than intersexuals, their parents, and their
acquaintances (including lovers)." n140 This obsession with "normalizing" the
infant may cause clinicians to inappropriately influence parents'
decision-making. Combined with negative social attitudes towards the intersexed,
the doctor's own opinions may be overwhelmingly coercive to parents. Since the
current model of treatment does not require doctors to recommend that parents
seek counseling by trained professionals, n141 unable to work through their
anxiety and guilt, parents are amenable to the quick fix to their problem that
they believe genital-normalizing surgery offers. Parents who are still grieving
over the loss of the "perfect" child they expected are especially vulnerable to
what the doctor believes is in their best interests. Coercion and improper
influence by doctors prevent the parents of intersexed infants from giving
voluntary consent to genital-normalizing surgery.
The final requirement for valid legal consent is that it must be made by
PAGE 13
19 Yale L. & Pol'y Rev. 469, *487
someone competent to make such a decision. This requires that the parents have
an appreciation of the nature, extent, and probable consequences of
genital-normalizing surgery. Yet, there is strong evidence that parents are not
competent [*488] to give consent to genital-normalizing surgery on behalf of
their intersexed infants. Edmund G. Howe, Professor of Psychiatry and Director
of Programs in Medical Ethics, finds that "when surgeons recommend surgery in
infancy, it may induce feelings of shame in the parents toward their child."
n142 The extreme stress of these circumstances combined with the fact that
surgeons recommend immediate action may cause parents to make impulse decisions
about whether to consent to genital-normalizing surgery. Even when parents are
given all relevant information by doctors, some experts argue that "many
families are so devastated during the initial phases of their child's evaluation
and treatment that they may not fully comprehend and absorb the information
presented to them." n143 Furthermore, "since parents cannot know whether their
intersexed child will benefit more from having surgery or not," n144 there is no
way to accurately weigh the possible consequences of genital-normalizing
surgery. The fact is that there is just not enough accurate information
available on the benefits or consequences of genital-normalizing surgery for
even the most well-meaning and contemplative parents to make truly informed
decisions for their infants.
The current model of treatment for intersexed infants fails the test for
legal informed consent at every step. No matter how well-meaning their
intentions, parents are incapable of giving legal informed consent to the
performance of genital-normalizing surgery on their infants because the current
model of treatment does not offer these parents the tools that they need to come
to an informed, voluntary, competent decision.
Conclusion
Surgeons who perform genetic normalizing surgery, whether on an emergency basis
or at the behest of the intersexed infant's parents, should be aware that,
because genital-normalizing surgery is not necessary nor proven beneficial for
the infant with clitoromegaly or micropenis, the required elements of legal
informed consent are likely to have not been met. In light of the questionable
scientific basis behind its use, the lack of follow-up data on its benefits, and
the overwhelming evidence of its negative physical and psychological results for
many intersexuals, a moratorium should be declared on the use of defenseless
infants as the experimental subjects of genital-normalizing surgery.
FOOTNOTES:
n1. Michael Kowalski, Applying the "Two Schools of Thought" Doctrine to the
Repressed Memory Controversy, 19 J. Leg. Med. 503, 505 (1998) ("Primum non
nocere (first do no harm) is a phrase recognized as one of the most significant
admonitions from the Hippocratic Oath.").
n2. Kenneth Kipnis & Milton Diamond, Pediatric Ethics and the Surgical
Assignment of Sex, 9 J. Clinical Ethics 398, 401 (1998).
n3. Alice Domurat Dreger, A History of Intersexuality: From the Age of Gonads
PAGE 14
19 Yale L. & Pol'y Rev. 469, *488
to the Age of Consent, 9 J. Clinical Ethics 345, 345 (1998) (""Hermaphroditism'
and "intersex' are blanket terms used to denote a variety of congenital
conditions in which a person has neither the standard male nor the standard
female anatomy.").
n4. Id. ("Of course, what counts as "standard' male or female is open to
interpretation."); Alice Domurat Dreger, "Ambiguous Sex" - or Ambivalent
Medicine? Ethical Issues in the Treatment of Intersexuality, 28 Hastings Center
Rep. 24, 26 (1998) ("How small must a baby's penis be before it counts as
"ambiguous'?").
n5. Anne Fausto-Sterling, Sexing the Body: Gender Politics and the
Construction of Sexuality (2000); Ruth G. Davis, Am I a Man or a Woman?,
Glamour, Apr. 2000, at 201, 202; Intersex Support Group International (ISGI),
Director's Page, at http://isgi.org/director.html (visited Mar. 8, 2001) ("One
form or another of these conditions appears in approximately 1 in 2,000 live
births.").
n6. Section on Urology, Am. Acad. of Pediatrics, Timing of Elective Surgery
on the Genitalia of Male Children with Particular Reference to the Risks,
Benefits, and Psychological Effects of Surgery and Anesthesia, 97 Pediatrics
590, 590 (1996).
n7. See Domurat Dreger, supra note 4, at 27 ("The late twentieth century
medical approach to intersexuality is based essentially on an anatomically
strict psychosocial theory of gender identity.").
n8. Intersex Soc'y of N. Am., Hypospadias: A Parent's Guide to Surgery, at
http://www.isna.org/hypospadias.html (visited Mar. 31, 2000).
n9. The birth of an intersexed infant is viewed by the medical community as
an "emergency" requiring immediate surgical attention. Robert A. Crouch, Betwixt
and Between: The Past and Future of Intersexuality, 9 J. Clinical Ethics 372,
372-73 (1998).
n10. Id. at 373.
n11. Section on Urology, Am. Acad. of Pediatrics, supra note 6, at 590.
n12. Crouch, supra note 9, at 373.
n13. Id..
n14. Id. at 372-74.
PAGE 15
19 Yale L. & Pol'y Rev. 469, *488
n15. Kipnis & Diamond, supra note 2, at 399.
n16. Domurat Dreger, supra note 4, at 26.
n17. Id.
n18. Id. at 28.
n19. Id.
n20. Id. at 29.
n21. Id.
n22. This summary of the John/Joan case draws upon John Money & A.A.
Ehrhardt, Man and Woman, Boy and Girl (1972); Kipnis & Diamond, supra note 2, at
398-402; and Domurat Dreger, supra note 4, at 24-25.
n23. Kipnis & Diamond, supra note 2, at 399 (quoting an interview with the
psychiatrist who uttered these words in J. Colapinto, The True Story of
John/Joan, Rolling Stone, Dec. 1997, at 54-97).
n24. John Money et. al., Sexual Signatures: On Being A Man or Woman 98
(1975).
n25. Domurat Dreger, supra note 4, at 25.
n26. Milton Diamond & Keith Sigmundson, Sex Reassignment at Birth: Long-term
Review and Clinical Implications, 151 Archives of Pediatrics and Adolescent
Medicine 298-304 (1997).
n27. Id.
n28. Id. at 299.
n29. Id.
n30. Id. at 299.
PAGE 16
19 Yale L. & Pol'y Rev. 469, *488
n31. Id. at 303.
n32. Id. at 299.
n33. Id. at 299-300.
n34. Id. at 300.
n35. Id.
n36. Id.
n37. Id. at 300.
n38. Id. at 301.
n39. Kipnis & Diamond, supra note 2, at 400 ("Money's and Ehrardt's twin
study had only a single experimental subject and a single control.").
n40. Suzanne Kessler, Lessons from the Intersexed 136 n.10 (1998) ("Almost
all of the published literature on intersexed infant case management has been
written or co-written by one researcher, John Money.").
n41. Diamond & Sigmundson, supra note 26, at 303.
n42. Crouch, supra note 9, at 374.
n43. The issue of whether or not genital normalizing surgery on infants is
performed with legal informed consent has never been presented to the American
courts. It has, however, been recently decided in the negative by the
Constitutional Court of Colombia. A summary of the court's holding can be found
at http://www.isna.org/Colombia/pr.html.
n44. Charles Fried, Medical Experimentation: Personal Integrity and Social
Policy 14 (1974).
n45. Lois A. Weithorn, Children's Capacities in Legal Contexts, in Children,
Mental Health, and the Law 35 (N. Dickon Reppucci et al. eds., 1984) (citing
Restatement (Second) of Torts 892B (1979)) ("If, to the knowledge of the
PAGE 17
19 Yale L. & Pol'y Rev. 469, *488
surgeon, the patient was not aware of what he was consenting to and he was not
consciously ignorant and ready to give consent to the surgeon to operate in any
way he sees fit, then the patient's consent was induced by a substantial mistake
and ... is not effective").
n46. Id. at 35-38.
n47. Id. at 35 (citing Restatement (Second) of Torts 892A (1979)).
n48. Id. 892D (1979).
n49. Schloendorff v. Society of New York Hospital, 105 N.E. 92 (1914).
n50. Id. at 93.
n51. E.g., Barnett v. Bachrach, 34 A.2d 626 (D.C. 1943) (holding that consent
is unnecessary when a patient requires an immediate operation); Luka v. Lowrie,
136 N.W. 1106 (Mich. 1912) (finding that a doctor who amputated an unconscious
accident-victim's foot to save his life not liable for battery).
n52. Dunham v. Wright, 423 F.2d 940, 942 (3d Cir. 1970).
n53. Id. at 941 (defining an emergency as a situation "which places the
patient in immediate danger"); see also Restatement (Second) of Torts 892D
(1979) ("An emergency makes it necessary or apparently necessary, in order to
prevent harm to the other, to act before there is opportunity to obtain consent
from the other or one empowered to consent for him.").
n54. Restatement (Second) of Torts 892D (1979).
n55. Tania E. Wright, A Minor's Right to Consent to Medical Care, 25 How.
L.J. 525, 528 (1982).
n56. Dreger, supra note 3, at 352. There is only one intersex condition that
fairly constitutes a medical emergency and that is congenital adrenal
hyperplasia which may indicate an underlying life-threatening metabolic problem.
Bruce E. Wilson & William G. Reiner, Management of Intersex: A Shifting
Paradigm, 9 J. Clinical Ethics 360, 365 (1998) ("The only true medical emergency
in the vast majority of newborns with intersex conditions is the evaluation for
congenital adrenal hyperplasia.").
n57. Many of these advocacy groups have been formed on the intersexed. E.g.,
Intersex Society of North America, <www.isna.org>; Intersex Support Group
PAGE 18
19 Yale L. & Pol'y Rev. 469, *488
International, http://www.isgi.org; Androgen Insensitivity Syndrome (AIS)
Support Group, http://www.medhelp.org/www.ais; Hermaphrodite Education and
Listening Post (HELP), http://www.jax<uscore>inter.net/<diff>help/sexdiff.html;
K.S. & Associates (Klinefelter's Syndrome), http://www.genetic.org/ks/; National
Adrenal Diseases Foundation, http://www.medhelp.netusa.net/www/nadf.htm.
n58. Dr. Janet Goodall, 337 The Lancet 33, 34 (Jan. 5, 1991).
n59. Intersex Society of North America, Recommendations for Treatment,
available at http://www.isna.org/recommendations.html (visited Mar. 21, 2001).
n60. Kessler, supra note 40, at 35, 36.
n61. E.g., Justine Marut Schober, A Surgeon's Response to the Intersex
Controversy, 9 J. Clinical Ethics 393, 394 (1998) ("Early surgery addresses
parental comfort and a societal view of what constitutes either a male or female
genital appearance."); Gerardo Izquierdo, M.D. & Kenneth I. Glassberg, M.D.,
Gender Assignment and Gender Identity in Patients with Ambiguous Genitalia, 42
Urology 232, 232 (1993) ("Gender assignment ... must be considered a
psychosocial emergency."); Cynthia H. Meyers-Seifer & Nancy J. Charest,
Diagnosis and Management of Patients with Ambiguous Genitalia, 16 Seminars in
Perinatology 332, 332 (1992) ("The birth of an infant with ambiguous genitalia
is a social and potentially medical emergency.").
n62. Wilson & Reiner, supra note 56, at 362.
n63. Sherri Groveman, The Hanukkah Bush: Ethical Implications in the Clinical
Management of Intersex, 9 J. Clinical Ethics 356, 358 (1998).
n64. Restatement (Second) of Torts 59 (1965); Restatement (Second) of Torts
892A (1979); Bonner v. Moran, 126 F.2d 121, 122 (U.S. App. D.C. 1941) ("Many
persons by reason of their youth are incapable of intelligent decision.").
n65. Louise Harmon, Falling Off the Vine: Legal Fictions and the Doctrine of
Substituted Judgment, 100 Yale L.J. 1, 16 (1990).
n66. Id. at 16-55 (discussing the evolution of the doctrine of substituted
judgment).
n67. Id. at 32-33.
n68. Angela Roddey Holder, Legal Issues in Pediatrics and Adolescent Medicine
125 (2d ed. rev. 1985); Prince v. Massachusetts, 321 U.S. 158, 166 (1944) ("It
is cardinal with us that the custody, care and nurture of the child reside first
PAGE 19
19 Yale L. & Pol'y Rev. 469, *488
in the parents, whose primary function and freedom include preparation for
obligations the state can neither supply nor hinder.").
n69. Harmon, supra note 65.
n70. Id.
n71. Richard W. Garnett, Why Informed Consent? Human Experimentation and the
Ethics of Autonomy, 36 Catholic Law. 455, 486 (1996).
n72. American Academy of Pediatrics, Informed Consent, Parental Permission,
and Assent in Pediatric Practice, 95 Pediatrics 314, 315 (1995).
n73. See, e.g., Stanley v. Illinois, 405 U.S. 645, 654-55 (1972) (requiring a
hearing of fitness as a parent before loss of custody of one's child); Wisconsin
v. Yoder, 406 U.S. 205, 232 (1972) (allowing Amish parents to remove their
children from the public education system); Pierce v. Society of Sisters, 268
U.S. 510, 535 (1925) (upholding the discretion of the parents in the choice of
schooling on the theory that "those who nurture [the child] and direct [the
child's] destiny have the right, coupled with the high duty, to recognize and
prepare [the child] for additional obligations"); Meyer v. Nebraska, 262 U.S.
390, 399 (1923) (upholding the rights of parents to direct the upbringing and
education of their children).
n74. See Bonner v. Moran, 126 F.2d 121, 122 (D.C. Cir. 1941) ("Generally
speaking, the rule has been considered to be that a surgeon has no legal right
to operate upon a child without the consent of his parents or guardian.");
Holder supra note 68, at 124-25.
n75. Ross Povenmire, Do Parents Have the Legal Authority to Consent to the
Surgical Amputation of Normal, Healthy Tissue from their Infant Children?: The
Practice of Circumcision in the United States, 7. Am. U.J. Gender Soc. Pol'y &
L. 87, 105-06 (1999).
n76. Prince v. Massachusetts, 321 U.S. 158 (1944).
n77. Id. at 159.
n78. See, e.g., Wisconsin v. Yoder, 406 U.S. at 234 (holding that parental
discretion may be challenged "if it appears that parental decisions will
jeopardize the health and safety of the child, or have a potential for
significant social burdens").
n79. See, e.g., In re Phillip B., 92 Cal. App. 3d 796, 801 (Cal. Ct. App.
PAGE 20
19 Yale L. & Pol'y Rev. 469, *488
1979) (upholding a parent's discretion to deny medical treatment for a child
only after finding inconclusive evidence that the alternative would be in the
best interests of the child ).
n80. The issue of experimental treatment also arises in the context of
sterilization of minor children. See, e.g., In re C.D.M., 627 P.2d 607, 612
(Alaska 1981) (requiring that the sterilization is in the best interests of the
child before it may ordered); In re Romero, 790 P.2d 819, 822 (Colo. 1990)
(allowing sterilization only after a showing that it is medically essential or
in the patient's best interest); In re Debra B., 495 A.2d 781, 783 (Me. 1985)
(employing a best interests test to determine whether sterilization should be
ordered).
n81. Bonner v. Moran, 126 F.2d 121 (D.C. Cir. 1941).
n82. Id. at 121.
n83. Id.
n84. Id. at 123 ("Here the operation was entirely for the benefit of another
and involved sacrifice on the part of the infant of fully two months of
schooling, in addition to serious physical pain and possible results affecting
his future life.").
n85. Id. at 123.
n86. Hart v. Brown, 289 A.2d 386 (Conn. 1972).
n87. Strunk v. Strunk, 445 S.W.2d 145 (Ky. 1969).
n88. Hart, 289 A.2d at 391.
n89. Id. at 389.
n90. Id.
n91. Strunk, 445 S.W.2d at 146.
n92. Hart v. Brown, 289 A.2d 386, 388 (Conn. 1972) ("In this type of graft
there is substantially a 100 percent change that the twins will live out a
normal life span - emotionally and physically.").
PAGE 21
19 Yale L. & Pol'y Rev. 469, *488
n93. In re Richardson, 284 So. 2d 185, 187 (La. Ct. App. 1973).
n94. Id. at 187.
n95. Id. at 185.
n96. Id. at 187.
n97. Id.
n98. In re Guardianship of Pescinski, 226 N.W.2d 180, 182 (Wis. 1975).
n99. Id.
n100. Despite the fact that this Note concentrates only on the conditions of
micropenis and clitoromegaly in this essay, it is the author's position that the
practice of non-medically-indicated genital normalizing surgery is abhorrent in
all cases without the patient's legal consent.
n101. Crouch, supra note 9, at 374.
n102. Marut Schober, supra note 61, at 393 ("The long-term efficacy of the
structural results of various surgeries and their impact on the individuals'
psychological, social, and physical adjustment remains unknown.").
n103. Domurat Dreger, supra note 3, at 351 ("What few outcome studies there
have been of intersex management have basically focused on how good the specific
surgical repair turned out.").
n104. Marut Schober, supra note 61, at 393.
n105. E.g., Intersex Society of North America, What is ISNA?, at
http://www.isna.org (visited Mar. 27, 2000) ("The Intersex Society of North
America (ISNA) is an education, advocacy, and peer support organization which
works to create a world free of shame, secrecy, and unwanted surgery for
intersex people (individuals born with anatomy or physiology which differs from
cultural ideals of male and female)."); Intersex Voices, What is Intersex Voices
about?, at http://www.sonic.net/<diff>cisae (visited March 31, 2000) ("The
Intersex Voices page is written by intersexed people and is presented as an
alternative voice to the writing which have heretofore appeared almost
exclusively in the medical press, written by non-intersexed people. What you
will find here are our voices, our experiences, our views and feeling about
PAGE 22
19 Yale L. & Pol'y Rev. 469, *488
ourselves, our lives in the past and in the present.").
n106. Edmund G. Howe, Intersexuality: What Should Careproviders Do Now, 9 J.
Clinical Ethics 337, 338 (1998).
n107. Wilson & Reiner, supra note 56, at 363.
n108. Cheryl Chase, Surgical Progress Is Not the Answer to Intersexuality, 9
J. Clinical Ethics 385, 386 (1998).
n109. Id. at 385.
n110. Id. at 387.
n111. Wilson & Reiner, supra note 56, at 364.
n112. M.M. Bailez et. al., Vaginal Reconstruction After Initial Construction
of the External Genitalia in Girls with Salt-Wasting Adrenal Hyperplasia, 148 J.
Urology 680, 684 (1992).
n113. Chase, supra note 108, at 389.
n114. Howe, supra note 106, at 338.
n115. Wilson & Reiner, supra note 56, at 364.
n116. Howe, supra note 106, at 337 ("Many who have had this surgery report
that they subsequently acquired a gender identity that is different from their
anatomically assigned gender.").
n117. Wilson & Reiner, supra note 56, at 361.
n118. See Schober, supra note 61, 394.
n119. American Academy of Pediatrics Committee on Bioethics, Female Genital
Mutilation, 102 Pediatrics 153, 153 (1998).
n120. Id.
PAGE 23
19 Yale L. & Pol'y Rev. 469, *488
n121. Id. The Academy discusses "Type 1 FGM" involving "excision of the skin
surrounding the clitoris with or without excision of part or all of the
clitoris." They refer to this practice as a "clitorectomy" - the same term used
by genital normalizing surgeons when they remove all or part of the clitoris of
an intersexed individual with clitoromegaly.
n122. Chase, supra note 108, at 388.
n123. Id. at 385.
n124. Domurat Dreger, supra note 3, at 352.
n125. Howe, supra note 106, at 338.
n126. Sharon E. Preves, For the Sake of the Children: Destigmatizing
Intersexuality, 9 J. Clinical Ethics 411, 415 (1998).
n127. Id. at 417.
n128. Intersex Soc'y of N. Am., ISNA's Amicus Brief on Intersex Genital
Surgery, at http://www.isna.org/colombia/brief.html (visited Mar. 25, 2001).
n129. Preves, supra note 126, at 411.
n130. Crouch, supra note 9, at 379.
n131. Id. at 377.
n132. Howe, supra note 106, at 338 (exploring the question: "Why Is This
Controversy So Heated?").
n133. Domurat Dreger, supra note 3, at 345.
n134. E.g., Intersex Society of North America, http://www.isna.org; Intersex
Support Group International, http://www.isgi.org; Androgen Insensitivity
Syndrome (AIS) Support Group, http://www.medhelp.org/www.ais; Hermaphrodite
Education and Listening Post (HELP), http://www.help@jaxnet.com; K.S. &
Associates (Klinefelter's Syndrome), http://www.genetic.org/ks/; National
Adrenal Diseases Foundation, http://www.medhlp.netusa.net/www/nadf.htm.
n135. Documentary on Intersex (Discovery Channel television broadcast, Mar.
PAGE 24
19 Yale L. & Pol'y Rev. 469, *488
26, 2000).
n136. Domurat Dreger, supra note 3, at 352 ("Parents are at least in most
cases not told that the treatment model is not proven to work, based on a
peculiar theory of gender identity formation, and increasingly widely
criticized.").
n137. Wilson & Reiner, supra note 56, at 366.
n138. Schober, supra note 61, at 394.
n139. Domurat Dreger, supra note 3, at 349.
n140. Id. note 4, at 25.
n141. Groveman, supra note 63, at 357.
n142. Howe, supra note 106, at 339.
n143. Wilson & Reiner, supra note 56, at 366.
n144. Howe, supra note 106, at 340.
102D3P
********** Print Completed **********
Time of Request: January 20, 2002 07:38 pm EST
Print Number: 968:0:44253913
Number of Lines: 950
Number of Pages: 24