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Surgical Treatment of Infants
with Ambiguous Genitalia:
Deficiencies in the Standard of Care and Informed Consent
by Hazel Glenn Beh and Milton Diamond 1
First published in: Michigan Journal of Gender & Law, Vol. 7, No. 1, 2000, pp. 1-63
II. The Remarkable Case of Joan/John
III. The Development of a Surgical Standard of Care
- A. Standards of Care Within the Medical Community
- B. The Surgical Standard in Treatment of Ambiguous Genitalia
- C. Standard Care and Malpractice Claims
IV. Parental Consent to Genital Surgery and Sex Reassignment on Behalf of Children
- A. The Doctrine of Informed Consent
- B. Informed Consent and Parental Decision Making on Behalf of Infants
- C. The Problems of Informed Consent and Infant Genital Surgery
- 1. The Aura of Urgency
- 2. Imparting Incomplete Information
- 3. Perpetuating Secrecy
- 4. Failing to Disclose The Uncertainty of the Long-term Outcome
- 5. Ignoring The Child's Right to an Open Future
V. Learning from the Past: What Should the Future Hold?
VI. Concluding Thoughts
This article discusses the development of a surgical approach to treating intersex2 infants and others with genital anomalies that began in the late 1950s and 1960s and became standard in the 1970s. Although professional literature has recently questioned the surgical approach to the treatment of infants, controversy surrounding treatment persists and the medical community has divided. How surgical treatment including sex reassignment surgery for intersex infants became a routine recommendation of practitioners and how parents were persuaded to consent to such radical surgeries on their infants provides a cautionary tale that is relevant both for medicine and law.
Over the past four decades, early surgical intervention for infants who are born with ambiguous genitalia3 or who suffer traumatic genital injury often has been recommended as standard procedure.4 Surgical advances in this century have made it possible for physicians to choose a gender5 for the child and then to sculpt gender appropriate genitalia to an approximation of normal-looking appearance. For the most part, when choosing surgical treatment, physicians have opted for a female form because it is easier to fashion female genitalia than male.6 Relying on a nurture-based theory of gender identity, physicians advised parents to surgically alter their intersexed infant and to raise the child in a manner consistent with its surgically altered genitalia without regard to the gender identity that might have otherwise naturally developed.7 The same advice has been offered for any male infant whose penis was considered significantly small or had been severely mutilated by trauma. Clinicians have assured parents that the surgical potential for normal-looking genitalia should dictate the gender of rearing and that any innate gender propensity of the child can be changed by careful upbringing.
Medical literature since the 1970s to the present, despite a paucity of confirming evidence, promoted this treatment based largely on a body of published reports initially extrapolated from studies of intersexed 8 individuals and then the incredible case of a single infant that was widely reported in the professional medical, psychiatric and popular literature. In 1997, the medical community was reacquainted with the patient who had been long lost to follow-up.9 Only then did the medical community finally discover that the outcome of this single case was not as first reported and the bases on which this treatment rests began to crumble.
Part II of this article discusses the remarkable case of Joan/John (J/J), a male infant whose penis was destroyed by a surgical accident and who was then intentionally castrated and surgically transformed into a female-looking infant.10 Touted as a success, this case report became the foundation of standard care for treatment of certain intersex conditions, micropenis, and accidental penile amputation in infancy. Unfortunately, the outcome of the case was never fully reported until 1997.11 Had the true facts been revealed earlier, or its premises been subjected to more rigorous scientific inquiry, the medical standard that developed probably would have been different.
Part III of this article discusses generally how medical standards of care develop and how a poorly grounded standard of care became entrenched through anecdotal reporting and without scientific validation. This part concludes by discussing and ultimately questioning tort law's self-imposed impotence in cases where a negligent standard of care develops because treatment has not been subjected to scientific inquiry. While under ordinary negligence principles, juries can find liability based on a profession's collective negligence in establishing their customary practices, many jurisdictions accord more deference to medical standards. In jurisdictions holding physicians to a standard of care based on the medical standards in the community rather than on ordinary principles of negligence, claims based on the assertion that medical practice collectively has deviated from common sense and the rigors of science will not succeed. Ultimately, this section argues with respect to standard care, that this legal standard promotes professional inertia, and when treatment standards are not validated by scientific studies, a deferential tort standard is not appropriate.
Part IV explores the role of the informed consent doctrine, particularly with regard to parental decision-making responsibilities for cases of ambiguous or traumatized genitalia. This section suggests that the aura of confidence the medical community projected concerning treatment, the practice of providing limited and simplistic information based upon a desire on the part of practitioners to shield and protect parents, and the sense of urgency physicians communicated to parents compromised the ability of parents to give their proper informed consent. Even more fundamentally, decision makers failed to consider the child's future potential for self-determination in the decisional calculation. Compounding these already formidable informed consent obstacles, clinicians also held the belief that children would only accept the gender of assignment if they were raised in the selected gender without equivocation, and so enlisted parents as accomplices to medical secrecy.
Part V offers the recommendations for change endorsed by critics of early surgery, including both medical ethicists and the Intersex Society of North America (ISNA). These recommendations give guidance to physicians and parents who must make very difficult medical decisions on behalf of their child which has lifelong implications on his or her sexual and gender identity and erotic and reproductive potentials.
II. The Remarkable Case of Joan/John
The contemporary medical model for dealing with cases of ambiguous or traumatized genitalia, started some four decades ago, but became firmly established when the case of John/Joan,12 was reported in the pediatric literature.13
In the early 1970s, John Money, a psychologist at The Johns Hopkins' Hospital, reported the case of an identical twin who lost his penis at the age of 8 months through a surgical mishap during phimosis repair.14 Along with psychologist Anka Ehrhardt, Money reported that following counseling, the parents consented to sex-reassignment surgery (castration, removal of the scrotum and initial fashioning of a vulva) and thereafter raising their once-son, John, as their new-daughter, Joan.15 This case is now known in the psychological and medical literature as the John/Joan case.16
The parents were counseled to raise the child as a girl and to provide the child only limited information:
They were broadly informed about the future medical program for their child and how to integrate it with her sex education as she grows older. They were guided in how to give the child information about herself to the extent that the need arises in the future; and they were helped with what to explain to friends and relatives, including their other child. Eventually, they would inform their daughter that she would become a mother by adoption, one day, when she married and wanted to have a family.17
The parents were further instructed to keep J/J's original sex a guarded secret. In fact, the parents later reported that in order to foster the secrecy they were advised at the time to move from their present locale to settle in a distant city.18
Since the children's family did not live close to The Johns Hopkins Hospital where Money had his office, the day-to-day care of the twins was left in the hands of a local psychiatric team following Money's direction. Once a year the twins were brought to The Johns Hopkins for evaluation and insuring adherence to the treatment plan.19 As subsequently reported by Money, Joan was satisfactorily developing as a girl in marked distinction to the other twin who was now developing as a normal boy.20
During the child's preadolescent years, Money reported that the parents were successfully raising the now-female child as a girl who appeared typical enough although with some "tomboyish traits."21 Money did not report on J/J's refusal to cooperate in his counseling22 and was apparently untroubled by some conduct that, in hindsight, would prove prescient, such as her persistence in standing to urinate despite her mother "teaching her how little girls go the bathroom."23
Besides tomboyishness and standing to urinate, other warning signs developed as the child matured, and these did not appear contemporaneously in the medical literature. Starting from the age of twelve, Joan was given estrogens to stimulate breast growth, widening of hips and other features of typical female pubertal development. These changes were not welcome and Joan was openly showing signs of rejecting her female assignment.24 The local psychiatrists attending to the child indicated their belief that Joan was a definite tomboy and expressed doubt she would develop into an acceptable and content female.25 Subsequently, although Money had followed J/J until this point and after, these findings of the child were not reported upon and Joan was seemingly "lost to follow-up."26 Actually, due to the discord Joan felt at the counseling she was receiving in Baltimore, at the age of nine she began to object at returning. Parental "bribes" were used to induce her to return for periodic check-ups. In one dramatic gesture of displeasure and defiance at her treatment, at age 13, she ran away from the hospital and was found hiding on the roof of a nearby building.27 Joan thereafter refused to return to The Johns Hopkins.28
Although the case had been widely reported and cited in the medical literature,29 the rejection of the assigned gender that the child exhibited did not appear in the literature30 when it might have had an impact on the developing standard of care.31 Instead the significance of the early reports of J/J's supposed successful sex change confirmed the apparent efficacy of this treatment as a "standard of care" for certain infants and contributed to its wide acceptance.32 Skepticism regarding its theoretical scientific base33 prompted one critic's prolonged search to find the "adult" J/J to see how she had actually developed and matured.34 In 1994 both J/J and Dr. H. Keith Sigmundson, the psychiatrist in charge of J/J's "local" care, were located and the child's life subsequently reintroduced to the professional literature in 1997.35
Suffice to say, the outcome was not as had been reported or predicted. At the time the twin was located again he was a married man, the father of three adopted children. The twin had, of his own initiative, at the age of fourteen, given up life as a girl and vowed to thereafter live as a male, John.36
Family members recollected that J/J, while yet quite young, showed extreme male-like behavior and rejection of femaleness. Joan refused "girl" toys, had little interest in girl activities and refused to wear dresses. She preferred to "play army" and often stole her brother's trucks and other toys to play with. In the prepubescent pre-teen years, Joan "thought I was a freak or something" and eventually "Figured I was a guy" but I "didn't want to wind up opening a can of worms."37 She was constantly teased at school because of her girl clothes and "boy looks and contemplated suicide."38 "At the age of 14 years, she was caught standing to urinate in the girls' bathroom so often that the other girls refused to allow her entrance.... Joan would also sometimes go to the boy's lavatory to urinate."39 Throughout all of these years, despite all of the medical and psychiatric contact Joan endured, and despite expressing "strong fears that something [had] been done to her genital organs," no one told her the nature of her condition.40 Indeed, they were advised not to.41
After years of "fruitlessly trying to implement Dr. Money's plan," gradually the local psychiatric team had a change of heart. They had noticed Joan's preference for boy's activities and refusal to accept female status, including her contemplation of suicide, so they had already discussed among themselves the possibility of accepting Joan's change back to male. They knew doing so would be against the accepted standard of care within the medical community.42
Joan's turning point occurred at the age of 14, when she, on her own initiative, began living as a boy, John. John recalls how soon thereafter he finally learned the truth, "In a tearful episode following John's prodding, his father told him of the history of what had transpired as an infant and why. John recalls: 'All of a sudden everything clicked. For the first time things made sense and I understood who and what I was.'"43
Ultimately, John, underwent a mastectomy to remove the estrogen-induced breast growth and requested phalloplasty to construct a penis. The orchiectomy (removal of the testicles) in infancy necessitated life-long male hormone replacement.44 Following the transition, John's life dramatically changed.
After the surgical procedures [female to male sex re-reassignment surgery], John adjusted well. As a boy he was relatively well accepted and popular with boys and girls. At 16 years, to attract girls, John obtained a windowless van with a bed and bar. When occasions for sexual encounters arose, however, he was reluctant to move erotically. When he told 1 girlfriend why he was hesitant, that he was insecure about his penis, she gossiped at school and this hurt John very much. Nevertheless, his peers quickly rallied around him and he was accepted and the girl rejected.45
John later married a woman and adopted her three children. He has bonded with them as a father.46 Coitus is occasional with his wife. They mostly pleasure each other with a great deal of physical affection and mutual masturbation. John can have coital orgasm with ejaculation."47
Notwithstanding John's present level of social acceptance and success as a male, he is bitter and angry over his treatment and his lost childhood. These dramatic and significant events in John's adolescent and adult life, were not entered into the professional literature and thus did not counter the positive reports on this case nor impact the standard of care as it had developed since the 1960s, until the Diamond and Sigmundson publication in 1997.48
III. The Development of a Surgical Standard of Care
The following sections explore, using the situations attendant to the treatment of genital trauma or ambiguities as a model, how standard medical practice sometimes develops from case reports, word-of-mouth and the gradual clinical acceptance of innovative therapy without true scientific inquiry into its effectiveness. The article then describes how the surgical standard for treatment of these cases moved from innovation to standard practice largely as a result of a single case report. Although the long-term results of J/Js surgery would not be known for many years, surgery became accepted treatment as the case was recounted in the literature. The article next explores how medical standards of practice are judged by the law and questions the premises surrounding traditional judicial deference to medical standards of care.
A. Standards of Care Within the Medical Community
Medical standards of care are always evolving, they are often neither static nor clearly delineated.49 A product of medical science's evolutionary character is that not all patients receive standard care. For example, some medical treatment can involve research and experimentation. Medical experimentation typically means that physicians treat patients according to a protocol designed to test an hypothesis and contribute to the body of medical knowledge.50 Medical practice, on the other hand, involves treatment by accepted therapies, typically considered "interventions that are designed solely to enhance the well-being of an individual patient or client and that have a reasonable expectation of success."51
Innovative therapy is neither experimental nor standard practice; it involves treatment that is "'designed solely to enhance the well-being of an individual patient or client' but has not been tested sufficiently to meet the standard of having 'a reasonable expectation of success.'"52 Because innovative therapies are not sufficiently tested, "the potential benefits and risks of innovative therapies are less well known or predictable."53 Thus, innovative therapies, while formulated with the best interests of the patient in mind, nevertheless expose patients to "a greater likelihood that the balance of benefits and risks may be unfavorable due either to the therapies being ineffective or entailing greater, possibly unknown risks."54 In order to minimize the number of patients exposed to the attendant unknown risks of innovative therapy, "[r]adically new procedures ... should ... be made the object of formal research at an early stage in order to determine whether they are safe and effective."55
Unfortunately, scientific assessments of innovative surgical procedures is not the norm within the practice of medicine.56 "Most innovations have become accepted as "standard procedures" without ever having been subjected to the rigorous testing for efficacy of a [randomized controlled trial]."57 "[I]f rigorous assessment [of medical innovations] occurs, it takes place quite late in the "career" of an innovation, after it has been reported anecdotally, adopted by professionals, medical organizations, public advocates, and third party payers, and accepted as 'standard practice.'"58 Commentators note that physicians often display a premature eagerness to adopt innovative therapy before adequate studies are conducted.59 In actuality, fewer than ten to twenty percent of medical practices have been subjected to randomized clinical trials.60 Instead, medical standards often develop in an ad hoc fashion, as physicians try new techniques and share early reports of their experiences among their colleagues.61 Thereafter, clinicians often become entrenched in following particularly therapies and resistant to adopting superior therapies.62 They are also reluctant to publish reports of unsuccessful procedures or treatments.63 Lastly, in regard to treatment outcome, the goals are still not universally accepted. There are those who think an intersexed child's acceptance of the gender of rearing is the goal while others see the child's comfort as an adult as the goal.64
B. The Surgical Standard in Treatment of Ambiguous Genitalia
Since innovative therapy often becomes standard therapy through informal acceptance and use,65 it should come as no surprise that the practice of recommending early surgical intervention in cases of genital ambiguity became standard prior to rigorous study of treatment outcomes.66 The treatment, first promulgated by Money, was based on a nurture theory of development derived from his analysis of clinical cases of intersexed individuals rather than from experimental investigation. It essentially began when his reports, based on studies of hermaphrodites, claimed it made no difference if such intersexed children were raised as either boys or girls; they would equally adapt to either gender assignment.67 The only caveats that Money expressed regarding sex reassignment was that it be done as early as possible, preferably before the 18th to 24th months of life; that no ambiguity be allowed in the gender of the child's upbringing; and that it is best for the infants' genitalia to be reconstructed to match the gender of assignment.68 Money's theory essentially held that if a child is raised as a boy it will develop as such and if raised as a girl that is the gender that will obtain. And since it would be easier to surgically repair the genitals with female-like anatomy, that would be the preferred method of management.69
The initial reports of the J/J case,70 particularly as reported in the 1972 book Man & Woman, Boy & Girl,71 and its purported success spread rapidly and was frequently recounted in the professional literature.72 It was thus that the theory that an infant's sex could be successfully reassigned had a profound influence on the standard of care for infants born with ambiguous genitalia, a micropenis or those losing their penis by trauma or accidental amputation.73
Cases of infants born with ambiguous genitalia are not common but neither are they rare.74 Of the 3 to 4 million children born annually in the United States, approximately 1 in 2000 are born with ambiguous external genitalia (thus approximately 1,500 to 2,000 such children yearly) and an estimated 100-200 pediatric surgical sex reassignments are performed in the United States annually.75
As the J/J case exploded into the literature, the prevailing treatment view became that when amputation or birth defects result in ambiguous genitalia, or genitalia are seemingly incompatible with male sexual functioning (standing to urinate as a child and adolescent and inserting a penis into a vagina as an adult), such males were better off to undergo sex reassignment to assure satisfactory adult sexual function as a female.76 Incorporating the theory that individuals are psychosexually neutral and would accept their gender of rearing, this proposal offered a relatively simple solution to what was seen as a difficult situation.77 This view came to dominate pediatric literature.78 Since then medical wisdom in these cases has remained largely based on hypothetical "surgical potentials" rather than on data from studies or even the long-term outcome of these surgeries.79
Surgical intervention became the standard of practice to the extent that, as recently as 1996, the American Academy of Pediatrics published these guidelines:
Research on children with ambiguous genitalia has shown that sexual identity is a function of social learning through differential responses of multiple individuals in the environment. For example, children whose genetic sexes are not clearly reflected in external genitalia (i.e., hermaphroditism) can be raised successfully as members of either sex if the process begins before the age of 2 years. Therefore, a person's sexual body image is largely a function of socialization.80
Remarkably, the only references to support this proposition were to the decade old or older works of John Money; no other corroborating work was cited.81
Not all neonatal surgical interventions for infants born with ambiguous genitalia involve sex reassignment.82 The surgical alteration of any female born with a clitoris larger than one centimeter is also recommended.83 Keeping with a component of the psychosexual neutrality-at-birth theory that says acceptance of the gender of rearing is contingent on having gender congruent genitalia, an enlarged clitoris was seen as needing reduction or removal to prevent psychosexual ambiguity and to promote parental bonding and affection.84 The efficacy of even these more modest surgical interventions to normalize genitalia have also lacked validation.85
Unfortunately, like the practice of female genital alteration ("mutilation") for cultural reasons,86 these surgical interventions can reduce or destroy the girl's potential for sexual satisfaction in adulthood and limit later surgical alternatives should the male gender manifest itself at adolescence.87 Interestingly, the effect of the 1996 Criminalization of Female Genital Mutilation Act,88 on medical treatment on infant females with enlarged clitorises is unknown. While congress intended the act to curb the cultural practices of "members of certain cultural and religious groups within the United States,"89 it broadly bars circumcision, excision and infibulation of "the whole or any part of the labia majora or labia minora or clitoris of another person who has not attained the age of 18 years"90 unless it is "necessary to the health of the person on whom it is performed."91 It remains to be seen whether a court might view surgical treatment to achieve normally appearing female genitalia as necessary to the health of infants.92
Although surgical intervention became "standard care" for intersex infants, rather than considering it a proven treatment protocol, it would have been more appropriate to characterize it as "innovative" therapy all along, because the treatments have not been adequately grounded in long-term studies.93 To this day, the recommended surgical management practices for ambiguous genitalia that have been promoted by the American Academy of Pediatrics94, remain invalidated by long-term study.95 The appropriateness of early surgical intervention was never well supported by scientific investigation, and, in fact, some of the recent research refutes its efficacy.96 While J/J's case may have initially suggested a positive outcome was possible, the true test of the treatment's success could not be known until the patient reached adulthood.97
Since the latest reports on J/J's case were revealed in 1997, the medical community has itself divided on this issue.98 Critics of the traditional standard of care challenge the premises that purportedly supported surgical intervention. First, they argue that there is no established body of evidence that normal infants are born sexually neutral. The original beliefs were predicated on reports of hermaphrodites, not average males and females. And these by a single investigator. In particular, critics note that the last decade has produced genetic, neurological and biological studies that support a premise that humans are, in keeping with their mammalian heritage, predisposed and biased to interact with environmental, familial, and social forces in either a male or female mode.99
Second, critics point to evidence that persons born with genitalia that fall outside our normal expectations can achieve a satisfying psychosexual adjustment without surgical intervention100 and argue that the imperative to create normal genitalia is of overrated significance.101 Notably, recent case studies of young males suffering accidental, traumatic loss of the penis (such as J/J's) suggest reattachment or surgical reconstruction of the penis will yield better psychosexual results than sex reassignment.102
Third, critics point to transsexuality,103 a condition in which individuals develop a sexual identity at odds with both their normal genitals and socially and sexually appropriate rearing. The lives and comments of such individuals provide evidence that gender identity is not solely linked to either the physical appearance of the genitalia or the socialization occurring in child rearing.104 If the normal appearance of the genitals and unequivocal rearing are determinant, then there could be no explanation for incidences of transsexuality.
Finally, critics remind those who adhere to the surgical standard that, "after some three decades of these surgeries, there is still not a single report of a non intersexed male having been successfully raised as a contented androphilic woman."105
Another important new factor prompting reevaluation of the surgical standard is the emergence of criticism by former patients. Many of the individuals who have been subjected to sex reassignment or clitoral surgery are calling for an end to such practices.106 The Intersex Society of North America, founded in 1993 and operated by intersexuals, has issued recommendations that call for avoiding unnecessary infant surgery and postponing irreparable surgical interventions.107 They challenge the efficacy of surgery, pointing to their own cases as evidence.108
Nevertheless, many clinicians continue to evaluate male infants for sex reassignment based on the size or functionality of the penis and females for surgical alteration based upon clitoris size109 and continue to perform surgical procedures to alter genitalia which forecloses later choices for patients. So great is the fear of psychosexual maladjustment,110 proponents of surgery identify phallus size as a key determinant of whether a genetic male should be surgically reassigned,111 even over male reproductive capacity.112 As Money explained for infants, "'Too small now, too small later' is a useful working rule with regard to construction or reconstruction of a penis."113
C. Standard Care and Malpractice Claims
In medical malpractice cases, courts often hold physicians to a standard of care that differs from ordinary principles of negligence.114 In general negligence law, a jury's view of "reasonable prudence" can override a deficient standard of care in a particular profession or industry.115 As Judge Learned Hand explained,
[I]n most cases reasonable prudence is in fact common prudence; but strictly it is never its measure; a whole calling may have unduly lagged in the adoption of new and available devices. It never may set its own tests, however persuasive be its usage's. Courts must in the end say what is required; there are precautions so imperative that even their universal disregard will not excuse their omission.116
While "[w]hat usually is done may be evidence of what ought to be done,"117 Judge Hand reminds us that no profession is so collectively infallible that custom alone should establish reasonable prudence in every instance.118
But in medicine, the prevailing view has held that "[t]he law generally permits the medical profession to establish its own standard of care."119 A physician must exercise "the degree of knowledge, skill, and care used by other physicians practicing in the same specialty."120 "[A] physician is negligent when the physician does an act which a reasonably careful physician would not do or fails to do an act which a reasonably careful physician would do."121 Physicians are not guarantors of positive outcomes, absent their own express promises;122 there is "no presumption of malpractice from the mere fact of injury."123
Allowing the medical community to abide by its own established standard of care means that when the profession "unduly lags" or adopts a negligent standard of professional care, tort law's deference to those standards will preclude liability.124 Ordinarily, expert testimony is essential to establish the medical standard of care, and a jury is seldom allowed to substitute its own evaluation of the reasonableness of that standard.125
There are a few notable cases that reject this extraordinary deference to an unassailable medical-community-based standard, most notably, Helling v. Carey.126 In Helling, a 32 year old plaintiff suffered vision loss as a result of glaucoma.127 The plaintiff asserted that the ophthalmologist was negligent for not conducting glaucoma screening. At the time the plaintiff suffered injury, the standard practice was to test persons over the age of 40 because glaucoma increased with age and was uncommon in younger persons.128 However, glaucoma testing was also inexpensive, simple, and posed no appreciable harm to patients.129 Relying on Judge Learned Hand's formulation of reasonable care in the T.J. Hooper case, the Washington Supreme Court held that physicians could be held negligent as a matter of law even when they conformed their treatment to the standard practice of the medical community.130 The court explained that "irrespective of its disregard by the standards of the ophthalmology profession, it is the duty of the courts to say what is required to protect patients under 40 from the damaging results of glaucoma."131 Notably, Helling resulted in a legislative attempt in Washington to clarify and retreat from the ordinary negligence standard in medical malpractice cases as it was articulated by the Washington court.132
Helling is generally regarded as a minority view133 and has been extensively criticized by legal scholars.134 As one commentator remarked, "In all other areas of tort law, the jury retains the power to find that the entire industry has 'unduly lagged;' in malpractice cases -- and these alone-- the jury is typically deprived of this power."135
Usurping the autonomy of the medical profession and creating judicially-decreed, faulty or costly standards of care may be the price of applying ordinary negligence principles, however there is also a cost to deference.136 As one commentator noted, "[t]he legal malpractice framework may actually serve to entrench poor standards into mainstream practice, as adherence to custom is one benchmark by which a physician's procedure is measured."137 One common expression echoing the same idea is: "You will seldom be sued if you do what your teacher taught you."
Because medical standards evolve, a secondary issue regards the standard of care when opinion in the medical community is fluid. While standard care requires that physicians "keep abreast" of "customary practice" as it develops and changes,138 few cases actually find liability based on the failure to keep pace with changing professional standards.139 More commonly, rather than failing to keep abreast of medical advances, the situation arises where physicians hold divergent opinions and the medical community divides because of the evolving nature of medical care. In fact, disagreement among practitioners is a common occurrence, "[o]n many matters the medical community is divided as to the preferred method of therapy or treatment."140 Generally, malpractice law protects those within a divided medical community; a physician following one of two schools of thought will enjoy freedom from liability even if the treatment chosen proves ineffective.141 While there are exceptional cases,142 the general rule is that so long as the medical community remains divided, malpractice law offers little protection to patients caught in the middle of an evolving standard of care.
Surgical treatment of ambiguous genitalia in infancy exemplifies an instance where prevailing medical wisdom, in an area of immense significance to individuals and their families, developed without any conclusive evidence that surgical intervention was appropriate. Because surgical care developed without sufficient scientific inquiry and validation of its long-term success, the premises behind judicial deference toward the medical community, at least in the types of cases presented herein, are not particularly compelling.143
The basic reason why professionals are usually held only to a standard of custom and practice is that their informed approach to matters outside common knowledge should not be "evaluated by the ad hoc judgments of a lay judge or lay jurors aided by hindsight." In the words of a leading authority, "When it can be said that the collective wisdom of the profession is that a particular course of action is the desirable course, then it would seem that the collective wisdom should be followed by the courts."144
Deference is accorded to the medical community by courts based on the assumption that medical standards are a product of collective wisdom and not of collective ignorance.145 Courts presume that standards of care are developed as a result of scientific inquiry and validation, not on ad hoc treatment based on mere anecdotal evidence. But such is not always the case,146 and was not so in the case of infant genital surgery where despite a lack of research it became "fairly common to recommend to the parents that they raise a male baby with micropenis as a girl[.]"147 and "fairly common to remove the enlarged, masculine-looking clitoris" of female hermaphrodites.148 When courts reject ordinary negligence principles in malpractice cases in those instances where treatment is not based upon collective wisdom but something much less, courts insulate the medical professional from liability for its collective shortcomings.
Moreover, the deferential standard reinforces professional inertia. Others have observed that slowness to change even after new information comes to light is not uncommon:
Perhaps more troubling [than adopting a standard without rigorous testing] is that even when trials are conducted, and the results published, physicians may not change their behavior, particularly when the trials report negative findings. Studies of the impact of [randomized controlled trials] on the practice of medicine, from the 1960s through the 1980s, have consistently found that [randomized controlled trials] have little direct impact on physician's practice.149
Where judicial deference allows the medical community to establish its own standards of care the court surrenders its power to "say [in the end] what is required,"150 and allow the profession "to set the measure of its own legal liability, even though that measure might be far below a level of care readily attainable through the adoption of practices and procedures substantially more effective in protecting others against harm than the self-decreed standard of the profession."151 This is particularly so when the profession has not even abided by its own recommendations for the evaluation of a standard or set of guidelines for the management of some specific clinical problem.152 By allowing the medical community to set the standard by which negligence is determined and by protecting the divided medical community, tort law renders itself impotent to promote change within the medical community.153
IV. Parental Consent to Genital Surgery and Sex Reassignment on Behalf of Children
This section explores the informed consent doctrine and the challenges of actualizing informed consent in the context of infant medical care. This section also confronts the question of how and why parents consented to radical, life-altering treatment of their intersex infant, and why the safeguards of informed consent seemingly failed. The article suggests that an atmosphere of urgency, partial and inaccurate disclosure of the condition and risks, a sense of secrecy and shame all impeded true informed consent. Worse, both the parents and doctors failed to include the child's right to an open future, the right to self-determination, into the decisional calculus.
A. The Doctrine of Informed Consent
The informed consent doctrine154 preserves a patient's right to make medical decisions on his or her own behalf.155 It protects "'the right of every individual to the possession and control of his own person, free from all restraint or interference of others, unless by clear and unquestionable authority of law.'"156 Two key interests are particularly at stake: bodily integrity and self determination.157 "The law of informed consent is predicated on notions of patient sovereignty and serves to safeguard the patient's right of choice."158
Informed consent requires physicians to disclose relevant information concerning a proposed treatment to patients.159 Generally, informed consent includes an obligation to provide information concerning alternatives to the proposed treatment, including "material risks incident to abstention from treatment."160
Although some courts continue to follow an older "physician-oriented" standard and measure the adequacy of disclosure with reference to the custom and standard within the medical community,161 over the past two decades, the decisional trend for judging the adequacy of informed consent is toward a "patient-oriented" standard, with reference to "what a reasonable person objectively needs to hear from his or her physician to allow the patient to make an informed and intelligent decision regarding proposed medical treatment."162
The modern trend of judging informed consent by a "patient-oriented" standard stands in stark contrast to a physician-based standard for judging the standard of medical care.163 Under the patient-oriented standard of informed consent, "what the medical community believes the patient needs to hear in order to make an informed decision is insufficient, without more, to resolve the question of what an individual patient reasonably needs to hear in order for that patient to make an informed and intelligent choice regarding the proposed treatment."164 The modern, patient-oriented standard does not shield physicians just because their disclosure conforms to the established custom of their peers if that standard is inadequate to meet the needs of the particular patient.165 Thus, in jurisdictions employing a patient-oriented standard of informed consent, patient autonomy rights prevail over medical-community standards.166
The trend toward judging the adequacy of disclosure from the patient's vantage is justified because the patient-oriented standard "better respects the patient's right of self-determination and affixes the focus of the inquiry regarding the standard of disclosure on the motivating force and purpose of the doctrine of informed consent -- aiding the individual patient in making an important decision regarding medical care."167
Under either a patient-oriented or physician-oriented standard, physicians do not need to disclose information when the physician determines that the risk of disclosure poses a threat "of detriment to the patient as to [make disclosure] become unfeasible or contraindicated from a medical point of view."168 Commonly known as the "therapeutic privilege," this exception to disclosure protects physicians from claims when the physician determines that disclosure would carry risks to the patient.
The classic therapeutic privilege case concerns a patient with peculiar apprehension or nervousness that suggests to physicians that full disclosure might pose additional health risks.169 Then, "[t]he medical standard ... [is] that a competent and responsible practitioner would not disclose information which might induce an adverse psychosomatic reaction in a patient highly apprehensive of his condition."170 In practice, few cases actually rely on the privilege as an excuse for nondisclosure.171 Importantly, commentators and courts recognize that liberal invocation of the privilege nullifies the general obligations of disclosure and respect for patient autonomy and self-determination and should therefore be discouraged.172
B. Informed Consent and Parental Decision Making on Behalf of Infants
While children and incompetents possess bodily integrity and self-determination rights in theory,173 finding a practical framework that allows others to make decisions and yet assures the correctness of those decisions for that patient presents a legal and ethical challenge.174 The primary obligation for making medical decisions on behalf of children resides with the child's parents and the obligation to disclose information about treatment runs to them.175
While the standard by which courts judge surrogate decision-making on behalf of incompetents is a "substituted judgment standard,"176 for infants the standard is better viewed as a "best interest standard" since an infant has no prior judgment from which decisionmakers might draw.177 Parental determinations of the child's best interest are accorded deference in order to protect family privacy and parental authority and autonomy; this authority, once based on a notion of "children as chattel,"178 is now premised on the belief that "the natural bonds of affection" motivate parents to act in the child's best interest.179 The law presumes that "family members are generally most concerned with the welfare of a patient."180
The authority of parents to make medical decisions, however, is not unbridled and the state may intervene where parental decision making seemingly fails to adequately protect the interests of the child.181 Usually, conflicts between physicians and parents draw the state into medical treatment controversies.182 It is unusual that anyone champions the interests of the child when the treating physician and parents agree on treatment, even though the child may have conflicting interests.183
One notable exception to the general rule that no judicial review is necessary when parents and doctors are in accord is with regard to involuntary sterilization decisions.184 Even when doctors and parents agree, significant statutory and common law oversight of the decision to involuntarily sterilize incompetents has developed in most states to prevent hasty involuntary sterilization of the mentally impaired,185 especially in childhood.186 "Any exercise of state power to order the non-consensual sterilization of an individual must be scrutinized carefully because of the individual's rights and interests that are at stake."187 Appellate courts caution lower courts that, "because sterilization necessarily results in the permanent termination of the intensely personal right of procreation, the trial judge must take the greatest care to ensure that the incompetent's rights are jealously guarded."188
The general rule of careful judicial scrutiny in involuntary sterilization cases notwithstanding, the ethical issues surrounding genital surgery on the intersex child has not drawn much attention until very recently, although such surgery poses serious risks to the intensely personal rights related to identity and erotic and possibly reproductive potential.189 Critics of surgical intervention on these infants contend that ethical considerations in the treatment of intersex children warrant more judicial and ethical attention than currently received.190 Requiring physicians and parents to establish the necessity of such surgery by "clear and convincing" evidence might well be justified because of the life-long impact of the surgery on crucial and substantive aspects of life.191
In surrogate decision making other than compulsory sterilization, judicial involvement is not the norm unless parents and physicians are not in accord.192 However, it remains useful to consider how courts evaluate cases in which parents and physicians disagree. Parental decisions to deny medical treatment for religious193 or other reasons194 may be challenged by the state and set aside by court if those decisions are deemed not in the child's best interest. While "parental autonomy is constitutionally protected," the state, as "guardian of society's basic values" sometimes has an overriding duty to protect children.195 When opinions on the advisability of treatment conflict between parents and physicians, ethicists often advise weighing three factors in evaluating whether to interfere in parental decision making: 1) the decisional capacity of the minor; 2) the burden and risk of treatment; and 3) the effectiveness of the treatment.196
While the first factor, decisional capacity, is seemingly inapplicable in considering medical treatment for infants, when decisions can be postponed, the infant's future decisional capacity should be protected. Protecting that potential decisional capacity remains a relevant consideration when weighing irremediable medical intervention such as the destruction of reproductive and erotic capacity or infringement on gender options.197 Under a trust-model of decision making that seeks to preserve a child's "right to an open future,"198 parents should attempt to safeguard a child's right of autonomy.199 and be "constrain[ed] from consenting on the child's behalf to that which may impair the enjoyment of autonomy at maturity."200
As to the second factor, consideration of the risks and burdens, includes weighing both the possibility of a positive outcome as well as the "human costs of getting there."201 When the burden and risk are great, treatment may carry too high a price to be justified.202 Some critics liken parental consent to genital "mutilation" which might permanently impair adult function as a form of child abuse that should be prohibited.203
Finally, as to the third factor, decisionmakers must "consider whether the treatment is likely to be effective in securing some significant and subjectively valuable benefit for the child."204 "Demonstratively effective" treatments should be weighted of more value than "experimental or investigational" treatments.205 The burden should be on proving the enhancement of the quality of life rather than the absence of harm.
C. The Problems of Informed Consent and Infant Genital Surgery
In order to weigh the risks, benefits, burdens and effectiveness of treatment parents need information concerning the proposed treatment. However, perhaps acting in part out of an ill-conceived concept of therapeutic privilege, parents have sometimes been deprived of key information.
Importantly, the effectiveness of informed consent must be tested by both what is disclosed and how it is disclosed.206 This section questions how parental informed consent was secured in cases of genital surgery. In particular, this section explores five grounds for criticizing the consent obtained by some practitioners in these cases: 1) the false aura of urgency; 2) the failure to impart complete and accurate information; 3) the oppressive secrecy in which parents were advised to not discuss the situation with others and to particularly hold all information even from the child; 4) the failure to reveal the uncertainty of the outcome; and 5) the failure to appreciate the child's right to an open future in the decisional calculation.
1. The Aura of Urgency
Clinicians have long imparted a sense of medical urgency to parents upon the birth of an intersex child.207 Although the intersex state is typically not life-threatening, parents are counseled to act quickly in order to establish a sex of rearing that is unequivocal.208 Many medical texts classify this decision making process as a medical emergency.209 Clinicians develop a treatment plan to facilitate conforming the child to that sex within days of birth.210 Money counseled parents to act quickly and to delay announcing the sex of a child born with ambiguity to avoid the trauma and embarrassment of a "reannouncement" of the child's sex and name.211
Despite the impression of "urgency" that clinicians create, surgical treatment of the genitals is essentially cosmetic and not medically urgent.212 Instead, the message of urgency is based upon social and psychological considerations, including stigmatization and the nurture assumption.213 Compassion for the parents and concern that they would not bond214 also prompted urgency, "the medical team will recommend that surgical therapy begin early in order to spare parents the trauma of seeing their child as intersexed each time they change the infant's diaper."215
Critics argue that none of the core premises on which early surgery was based justify urgency. First, the theory that children raised unambiguously with normalized genitalia would accept the gender of rearing was untested by reliable studies.216 In truth, physicians could not confidently assert, based on data, that surgery performed at any age would be any more or less successful.
Second, the stigma clinicians feared would befall a child in the locker room could be mitigated through less drastic alternatives than through immediate surgical alteration.217 When Diamond and Sigmundson first recommended a moratorium on most cosmetic infant genital surgery, they nevertheless supported the early decision to socially assign the child to boy or girl classification.218 They merely opposed taking the irreversible surgical step of removing body parts, while still recommending children be raised with a clear gender status based on which gender will likely develop.219 They wrote, "In rearing, parents must be consistent in seeing their child as either a boy or a girl; not neuter. In our society intersex is a designation of medical fact but not yet a commonly accepted social designation."220
Finally, recommending prompt surgery based on the fear of parental rejection and failure to bond is premised more on medical opinion than fact.221 Importantly, recommending surgery based on a concern for the sensibilities of parents and others is never appropriate, as only the best interest of the child is relevant.222 Critics contend that while "Money has presented some data that having a child with ambiguous genitalia causes parental stress, ... support for the second part of that hypothesis, that the stress on the parent (and presumably on the child) is alleviated by surgical correction, is entirely absent."223 As Alice Dreger commented, even if physicians were motivated by a singular desire to alleviate psychosocial problems of both the family and the child, "it is not self evident that a psychosocial problem should be handled medically or surgically. We do not attempt to solve the problems many dark-skinned children will face in our nation by lightening their skins."224 Further, parental anxiety and distress can be enhanced by this medical attention rather than reduced. Parental tension and stress can be reduced by managing the intersex condition as a normal variation and imparting to the parents the knowledge that the genital variation can be dealt with at a later age.
2. Imparting Incomplete Information
Clinicians treating children with congenital birth defects sometimes fail to impart accurate and complete information for a variety of reasons.225 The problem of inadequate disclosure during neonatal medical crises is not confined to the intersex infant:
The information available to the family in a medical crisis is quite often inadequate. Some have suggested that this problem is rooted in the complete dependence and lack of power of the patient and family. All information of both the particular and general medical type, is held by the hospital staff.... Physicians have a propensity not to admit the limitations of their professional knowledge and ability. Additionally, the use of medical jargon during counseling clouds the ability of parents to be fully informed226
Intersexed individual, Howard Devore, a practicing psychologist who counsels other intersexed persons has himself had 16 surgeries to repair a severe case of hypospadia. He has been quoted as saying;
"[In regard to surgery] There's going to be scarring and stricture formation and loss of sensation. No scar tissue is as flexible as skin. There's no way they can deny that. The 'informed consent' they give parents to sign is totally unrealistic. One of our [intersexed persons] main issues is that parents are told after a few surgeries, their children will have 'normal genitals."227
In the case of intersexuality, Money contended that in counseling, "parents need to have the necessary medical information, albeit somewhat simplified, in order to be able to explain their dilemma to themselves, before explaining it to other people."228 However, full and complete disclosure about the condition was generally not advised by professionals. Instead, counselors were advised that in counseling parents, the counselor should explain to parents that the child was "sexually unfinished."229 The concept that these children are "unfinished" is particularly deceptive because it implies that 1) with more gestational time unambiguous sex organs would have developed and 2) that physicians are not "changing" something fundamental about the child but are merely "finishing" the child's incomplete anatomy.230 :231In doing so, as Suzanne Kessler points out, clinicians are suggesting to parents that it is the genitals that are ambiguous and not the gender.
The message ... is that the trouble lies in the doctor's ability to determine the gender, not in the baby's gender per se. The real gender will presumably be determined/proven by testing, and the "bad" genitals (which are confusing the situation for everyone) will be "repaired." The emphasis is not on the doctors' creating gender but in their completing the genitals. Physicians say that they "reconstruct" the genitals rather than "construct" them.... The fact that the gender in an infant is "reannounced" rather than "reassigned" suggests that the first announcement was a mistake because the announcer was confused by the genitals. The gender always was what it is now seen to be. 232
When clinicians emphasize the incompleteness of the genitals and suggest to parents that surgery can make the genitals match a correct gender, they fail to help parents appreciate that the gender of the intersex child is not clearly established, not merely that the genitals have uncertain sexual characteristics. Indeed, it is the ambiguous nature of the genitals that signal the ambiguous nature of the child's future sexual identity and preferred gender, and that innate ambiguity cannot be masked by surgery.233 Parents require detailed information about the condition, the efficacy of treatment and the alternatives in order to weigh the burdens of surgically assigning a child to a gender, risking reproductive and erotic possibilities, necessitating future surgeries and lifelong medical and hormonal treatment.234
3. Perpetuating Secrecy
Secrecy is probably the most unusual and harmful aspect of the medical treatment prescribed for intersex conditions.235 Money contended that the sex of rearing must be unequivocal and as a result the treatment necessarily justified deception as the children matured. But, as the children grew older, this secrecy has had the added consequence of preventing their participation in later treatment choices.236 Parents were counseled to raise these children without equivocation as to the child's assigned sex and to withhold information from the child so that the child would feel secure in his or her gender.237
The medical community's zeal to raise intersexed babies or those sexually reassigned without ambiguity is necessarily deceptive,238 because, after all, despite the dogma, the child's genitals were not rendered by surgery unequivocally typically male or female.239 Secrecy persists even today, as one physician explained, "If they have an excellent outcome and they look perfect "I would downplay it [the original ambiguity] as much as possible."240
In a revealing case study debated in the Hastings Center Report, ethicists considered whether either a sixteen-year-old female or her parents should be informed when the teen seeks treatment for failure to menstruate.241 Upon discovery that the "girl has an XY genotype, a genetic abnormality called testicular feminization" 242 and "[possible] precancerous testes that require surgical removal" and will need vaginal surgery to have intercourse, the question arises whether the child or parents should be told the genetic information or the fact that she is "'really a guy.'"243 The treating doctor asks whether he can withhold the information until the child is twenty-one. Two authors suggest that the physician's concern is justified.244 They accept that the child's parents might become "emotionally distraught" and come to regard her as a "freak" or might at some point divulge the harmful information to her. The authors conclude that if "the functions of guardians to secure the wishes and welfare of minors ... can [not] be secured by disclosing [the patient's] genetic identity to her parents, then there seems no sound ethical reason to disclose this information in these circumstances."245 Addressing two fundamental questions, the authors reason:
"Would a typical physician act differently from Dr. P [the hypothetical doctor withholding information]?" The answer is "No!" Some, of course might inform her, but disclosing the information is by no means customary within the profession.... "Would a hypothetical reasonable person want this information revealed to her at this time?" Probably not. What reasonable person would needlessly choose to make a bad situation worse?246
The authors suggest that a loosely constructed "therapeutic privilege" applies to justify long-term deceptions toward both the patient and the teen's parents based merely on a belief that reasonable patients would not want to know such matters. Yet, contrary to this position, the judicial construction of the informed consent doctrine assumes patients want to know what is relevant and material to their condition.247 As the Canterbury court cautioned when fashioning this therapeutic privilege to withhold information from the patient,
The physician's privilege to withhold information for therapeutic reasons must be carefully circumscribed, however, for otherwise it might devour the rule itself. The privilege does not accept the paternalistic notion that the physician may remain silent simply because divulgence might prompt the patient to forego therapy the physician feels the patient really needs. That attitude presumes instability or perversity for even the normal patient, and runs counter to the foundation principle that the patient should and ordinarily can make the choice himself. Nor does the privilege contemplate operation save where the patient's reaction to risk information, as reasonably foreseen by the physician, is menacing. And even in a situation of that kind, disclosure to a close relative with a view to securing consent to the proposed treatment may be the only alternative open to the physician.248
In intersex cases, physicians both marginalized the participation of parents and then enlisted parents in maintaining a wall of secrecy that persisted into the child's adulthood249 without contemplating the actual risk of disclosure to the patient based on the unproved premise that unambiguous genitals and unequivocal child-rearing practices paired with a lack of information as to the nature of the original condition would benefit the child. What was left out of the equation that might militate in favor of full disclosure are the social and psychological costs in addition to the medical damage that secrecy can promote.250
A last cost of secrecy should be mentioned. Typically, patients eventually discover their condition from an inadvertent family slip, community gossip or personal investigation into puzzling aspects of their lives. The patient thus learns anyway what she or he was never supposed to have found out. Even more disturbing than discovering the secret, the former patient also discovers that his or her deformity is unspeakably shameful in the minds of parents and physicians. This revelation, usually coming without support, can be devastating.251 They wonder why they were not accepted and loved as they were. This makes manifest the fear of romantic/erotic relations and reduces the pursuit of intimate contacts. Last, the former patient learns that she or he has since childhood been systematically deceived by the very people who should have been the most trustworthy; parents and physicians. All this is damaging and needless.252 The solution is for complete honest and early disclosure of the situation with appropriate counseling and support.253
4. Failing to Disclose The Uncertainty of the Long-term Outcome254
Parents consenting to these surgeries might have responded differently had they understood the innovative nature of the treatment, and certainly it was the obligation of clinicians to so inform them.255 However, because the J/J case, as originally presented, had become "a classic for the academic and medical community"256 clinicians probably projected more confidence in the procedure than it deserved.257 Clinicians asserted the potential for successful "normalization" because the literature suggested such, when, in fact, insufficient data existed to support their premises.258 Indeed, clinicians were advised as recently as 1994, to project confidence in the treatment recommendations when counseling parents:
This [simplified medical] knowledge will help [parents] feel convinced that what is being done is correct and that it is their own decision as well as that of experts. Otherwise, they might easily feel that they are acquiescing to an intervention based on trial and error, which might prove to be all error."259
As to treatment of micropenis in particular, Money counseled:
It is fairly common to recommend to the parents that they raise a male baby with micropenis as a girl. This is, of course, a very difficult decision for parents to make, and they must be given all the information possible to understand the rationale and consequences of the decision. First and foremost, they [parents] need to know that gender identity and role are not preordained by genetic and intrauterine events alone, but that their differentiation is also very much a postnatal process and highly responsive to social stimulation and experience. Thus, they need to be reassured that their baby can grow up socially as a girl and fall in love as a female.260
The reassurance that counselors were urged to convey concerning the effectiveness of the treatment and that the treatment was not based on trial and error was not accurate because the only experience which clinicians could report was actually drawn from anecdotal and incomplete case reports that were appearing in the medical literature.261
5. Ignoring The Child's Right to an Open Future
Surgical intervention has been promoted as a way to offer the intersexed child a more "normal" life. Remarkably, proponents of surgical treatment ignore the possibility that the child might one day have a different concept of "normal" and want to choose a different course of treatment, or none at all.262 Surgical proponents discount the possibility that the intersexed adult might desire to participate in their treatment decisions as a countervailing justification to delay surgical interventions.263
A relevant rule extrapolated from the ethics surrounding the genetic testing of children is emerging that would accord more weight to the child's autonomy and right to an open future when making elective medical decisions. Recently, Laurence McCullough, medical ethicist at Baylor College of Medicine "Center for Medical Ethics and Health Policy" recommended:
When genetic conditions for which a child is at risk do not have biopsychosocial consequences until adolescence or adulthood, genetic testing for such condition should be postponed until later when the child can engage in informed assent as an adolescent or informed consent as an adult. Intersex conditions that neither are life-threatening nor involve chronic morbidity should be managed under this rule. Intersex conditions that are chronic and that involve manageable psychosocial consequences until adolescence or adulthood should be managed under this rule.264
Thus, he recommends that in balancing the desirability of normal-appearing genitalia with the foreclosure of the child's ability to later consent, the scales tip in favor of delaying treatment.
V. Learning from the Past: What Should the Future Hold?
There are increasing doubts among some in the efficacy of early surgery and an acknowledgment by many more that more study is needed.265 Given the current state of medical knowledge, ethical considerations suggest the course of treatment should change. Medical uncertainty coupled with the infant's inability to consent to this life-altering treatment and the child's right to an open future, suggest to critics, including the Intersex Society of North America, that a "moratorium" on infant surgery is the best course when surgery is solely intended to cosmetically change ambiguous genitals.266
These critics argue that parents of children with ambiguous genitalia would be better counseled to manage the psychosocial consequences of genital differences in childhood rather than opting for a surgical response. Nonsurgical approaches such as individual and family counseling to mitigate the stigma and develop coping strategies267 preserves a child's right to self-determination.268
Those who have already undergone surgical treatment present current ethical dilemmas in light of the revelation that there are those who daily struggle with gender confusion and medical questions and remain uncertain what surgical procedures were performed on them when they were an infant. There is no rationale reason why secrecy surrounding the early treatment should persist into adulthood. The incomplete or inaccurate medical information can result in mistaken assumptions about the actual health risks the individuals actually bear.269 For example, gonadectomy, exposes patients to a definite risk of osteoporosis and creates a need for life-long hormone replacement.270 Adult intersexed individuals report that their attempts to obtain a clear diagnosis and understanding of the treatment undergone as an infant are often frustrated.271 Therefore, some critics suggest that patients treated as infants and whose treatment was cloaked with secrecy should be recontacted so that they can be provided with complete medical information.272 Importantly, to the extent that new knowledge of J/J's case suggests that ongoing medical and psychological risks exists that can be alleviated or lessened by more medical information, practitioners may have continuing ethical and legal duties to their former patients.273
VI. Concluding Thoughts
In 1998, a young man, barely twenty, whose story mirrors J/J's, contacted Milton Diamond and described his encounter with both the medical profession and the legal profession as he came to terms with his medical history.274 He explained that after years of feeling he was an "it" or "alien" and not fitting in as a girl and considering himself more a boy,275 during family therapy as an adolescent, his mother, for the first time, revealed to him that he had significant genital surgery as an infant. Although not entirely sure of the significance of her revelation at that time, he eventually came to understand the full import of the surgery performed on him as an infant through persistent medical detective work. He discovered that his healthy testicles had been removed when he was an infant and he was raised as a female because of a significantly small penis noted at birth.276 At the age of seventeen he decided that he could no longer live as a female and, like J/J, reclaimed his male identity.277
Remarkably, although he once did, he now holds no anger toward his parents given what they were advised at the time;278 he was pleased that his parents assisted him in his transformation to male as a young adult. He believes now that they did the best they could, both in permitting surgery and then in accepting him when he shed the female identity. However, the young man felt that someone should account for the surgical removal of his testes and the sex reassignment performed on him as an infant that had scarred him so deeply.279 He sought legal advice as to whether to pursue a claim against the doctors who treated him; he said he was referred to the "best" malpractice firm in his state. The law firm considered his case at some length, but finally advised him that his case was weak and not worth pursuing. They explained to him that doctors had followed the "standard of care" at the time of his treatment.280 As a result, he abandoned the notion of filing suit; in his last contact with the attorneys they cautioned him that the statute of limitations, once tolled by his minority, was about to run.
What would a jury's reaction be to a story like J/J's if it were judging the standard of care that clinicians employed in these cases? In jurisdictions rejecting Helling v. Carey and the application of ordinary negligence principles to malpractice actions, tort law renders itself impotent to hold the medical community accountable for decisions based on failed medical standards or to be itself an agent for change. These jurisdictions presume the medical profession's own internal safeguards sufficiently protect the public and that the standards so developed deserve judicial deference. Jurisdictions rejecting Helling presume that the medical community's standard of care springs from collective wisdom and not from collective ignorance. It is in these circumstances that the wisdom of Judge Hand's words ring most true.
The informed consent doctrine has more potential to change collective practices, however. Especially in those jurisdictions that have adopted a patient-oriented standard to judge informed consent, the counseling approach clinicians employed in the past is not defensible. The informed consent doctrine requires physicians to reveal material data including risks, efficacy, and alternatives to patients, or their parents, in order to allow them to make informed decisions. The patient-oriented standard leaves little room for the inaccuracy and secrecy formerly employed in advising parents and patients. Providing parents with a fuller explanation of the risks, including the recently reported failures of treatment as well as information on the successful adaptation of individuals raised without surgery, may well curb parental consent. After all, few parents would probably consent to such extensive treatment if physicians reveal that there is no scientific evidence supporting the premise on which treatment is based and the child may ultimately reject the treatment and be left worse off for having gone through it.
Finally, a fuller airing of the ethical dimensions of treatment and the duties of informed consent may prompt a more cautious approach to surgical intervention.281 Importantly, recognizing the child's right to an open future as part of the decisional calculation may yield a more measured approach in these difficult cases. The child should have the final say in how it wants to live. As it has been often stated: the most important sex organ is between the ears rather than between the legs.282
1 Hazel Beh is an Assistant Professor of Law at the William S. Richardson School of Law, University of Hawaii. Milton Diamond is a Professor of Anatomy at the John A. Burns School of Medicine, University of Hawaii. The authors thanks Kenneth Kipnis, Sylvia Law, Julie Greenberg and Sherri A. Groveman for reviewing and discussing early drafts or excerpts.
2 Intersexed individuals are those that are born with biological features simultaneously typically male or female. For instance they might have one ovary and one testes or gonads that contain features of both ovarian and testicular tissue, they can have chromosomes of XXY, XO or other configurations. There are more than 1 dozen categories of intersex.
3 Ambiguous genitalia are those that are not clearly identified as male or female. Usually detected at birth they are a frequent sign of intersex.
4 See infra notes ___.
5 Gender as used in this paper is a social term representing the social conditions of boy and girl and man or woman. This is contrast to the biological terms of male and female. It is thus obvious that a male can live as a girl and woman and a female can live as a boy or man.
6 See infra notes __.
7 See infra notes __.
8 See John Money, et al., An Examination of Some Basic Sexual Concepts: the Evidence of Human Hermaphroditism, 97 BULL. JOHNS HOPKINS HOSP. 301, ___ (1955) ("In place of a theory of instinctive masculinity or femininity which is innate, the evidence of hermaphroditism lends support to a conception that psychologically, sexuality is undifferentiated at birth and that it becomes differentiated as masculine or feminine in the course of the various experiences of growing up"); John Money, Cytogenetic and Psychosexual incongruities with a note on space form Blindness. 119 AM. J. PSYCH. 820, __ (1963) ( "It is more reasonable to suppose simply that, like hermaphrodites, all the human race follow the same pattern, namely, of psychological undifferentiation at birth."). In the early days intersexed individuals were known as hermaphrodites and pseudohermaphrodites.
9 One of the authors of this article, Milton Diamond, was one of the two researchers who reintroduced the patient to the medical literature in 1997.
10 See infra notes ___.
11 See infra notes __.
12 For recent accounts of the John/Joan case, see Milton Diamond & H. Keith Sigmundson, Sex Reassignment at Birth Long Term Review and Clinical Implications, 151 ARCHIVES PEDIATRIC ADOLESCENT MED. 298 (1997) [hereinafter Sex Reassignment]; Milton Diamond & H. K. Sigmundson, Management of Intersexuality: Guidelines for Dealing with Persons with Ambiguous Genitalia, 151 ARCHIVES PEDIATRIC ADOLESCENT MED. 1046 (1997) [hereinafter Management of Intersexuality]; Milton Diamond & Kenneth Kipnis, Pediatric Ethics and Surgical Assignment of Sex, 9 J. CLIN. ETHICS 398 (1998) [hereinafter Pediatric Ethics]. Colapinto provides the most thorough examination of J/Js life. See John Colapinto, The True Story of John/Joan, ROLLING STONE, Dec. 11, 1997, at 54. See also John Colapinto, 2000 (In Press). AS NATURE MADE HIM: THE BOY WHO WAS RAISED AS A GIRL. Harper Collings, New York. [hereinafter As Nature Made Him].
Professor Greenberg discusses the case in a critique of law and medicine's rigid, binary approach to sex and gender. See Julie A. Greenberg, Defining Male and Female: Intersexuality and the Collision Between Law and Biology, 41 ARIZ. L. REV. 265 (1999).
13 See SUZANNE J. KESSLER, LESSONS FROM THE INTERSEXED 6 (1998) (commenting, "virtually all academic writing on sex and gender refers to a case first described by sexologist John Money in 1972"); Alice Domurat Dreger, "Ambiguous Sex" -- or Ambivalent Medicine? Ethical Issues in the Treatment of Intersexuality, 28 HASTINGS CENTER REP. 24, 26 (1998) (describing establishment of surgical standard).
For references to the surgical standard, see, e.g., JOHN MONEY & ANKE A. EHRHARDT, MAN & WOMAN/BOY & GIRL (1972) [hereinafter MAN & WOMAN]; P. K. Donahoe et al., Clinical Management of Intersex Abnormalities, 28 CURRENT PROBLEMS IN SURGERY 517, 527 (Aug. 1991); LOWELL KING, UROLOGIC SURGERY IN NEONATES & YOUNG INFANTS 369-70 (1988); Alan D. Perlmutter, Intersex, 2, 15, in UROLOGICAL SURGERY IN INFANTS AND CHILDREN (Lowell R. King, ed.) (1997); 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 (April 1996) (also available as American Academy of Pediatrics 1997 Policy Reference Guide) [hereinafter Timing of Elective Surgery]; C. R. J. Woodhouse, Ambiguous Genitalia and Intersexuality -- Micropenis, in PEDIATRIC UROLOGY 689, 690 (Barry O'Donnell & Stephen A. Koff, eds. 1997).
14 The child's penis was "ablated flush with the abdominal wall" during an electrocautery procedure which burned the entire penis, causing it to eventually necrose and slough. MONEY & EHRHARDT, MAN & WOMAN, supra note __, at 118. Penile amputation occurs by surgical or other childhood mishaps. They are not common but are not rare. See, e.g., Bernardo Ochoa, Trauma of the External Genitalia in Children: Amputation of the Penis and Emasculation, 160 J. UROLOGY 1116 (Sept. 1996) (reporting seven case studies); Tracy Thompson, Two Atlanta Physicians Get Reprimand Over Babies' Burns Suffered During Circumcisions, ATLANTIC J. & CONST. November 8, 1986, at B1 and Joan McQueeney Mitric, Merits of Circumcision A Subject of Dispute Disfigurement Leads to Two Lawsuits in Atlanta, WASH. POST, Oct. 23, 1986, at Z9 (reporting that two babies, on the same day, were burned during circumcision and one underwent sex-change surgery because of the severity of tissue destruction).
15 The plan was developed as follows, "The parents agonized their way to a decision, implementing it with a change of name, clothing and hairstyle when the baby was seventeen months old. Four months later, the surgical first step of genital reconstruction as a female was undertaken, the second step, vaginoplasty, being delayed until the body is full grown. Pubertal growth and feminization will be regulated by means of hormonal therapy with estrogen." MONEY & EHRHARDT, MAN & WOMAN, supra note __, at 118-19. The child underwent an orchiectomy (surgical removal of testicles) and preliminary surgery before age two. Diamond & Sigmundson, Sex Reassignment, supra note __, at 298, 299.
16 The names are pseudonyms, Sex Reassignment, supra note __, at 299; Colapinto, supra note __. Kitzinger writes: "The John/Joan case is still amongst the most widely cited studies in social science textbooks on gender issues. Its popularity with textbook authors is due, in part to the . . . nature of a case [which seems better suited to science fiction than science]. Celia C. Kitzinger, Gender, Sex and Knowledge: The construction of the John/Joan Case in Social Science Textbooks (In press).
17 MONEY & EHRHARDT, MAN & WOMAN, supra note __, at 119.
18 Diamond & Sigmundson, Sex Reassignment, supra note __, at 302. Interestingly, in a book published in 1968 Money had written: ". . . it used to be commented in passing that when a new announcement of sex was necessary, the parents should move to a new town, find a new job, sever all connections with the past, and start life anew. I have found that this formula is completely untenable." JOHN MONEY, SEX ERRORS OF THE BODY: DILEMMAS, EDUCATION, COUNSELING" 61 (1st ed. 1968) [hereinafter SEX ERRORS 1968] at 61.
19 See Colapinto, supra note __, at 68.
20 See Colapinto, supra note __, at 55.
21 Money reported:
Regarding domestic activities, such as work in the kitchen and house traditionally seen as part of the female's role, the mother reported that her daughter copies her in trying to help her tidying and cleaning up the kitchen, while the boy could not care less about it. She encourages her daughter when she helps her in the housework.
MONEY & EHRHARDT, MAN & WOMAN, supra note __, at 121. However, he continued, "[t]he girl had many tomboyish traits, such as abundant physical energy, a high level of activity, stubbornness, and being often the dominant one in a girls' group. Id. at 122.
22 See Colapinto, supra note __, at 68.
23 MONEY & EHRHARDT, MAN & WOMAN, supra note __, at 120. The mother noted times when the girl had "penis envy" on seeing her twin brother's penis in the bath. Id. at 121.
24 P. Williams & M. Smith, Open Secret: The First Question. Science Series, BBC Television Production; Milton Diamond, Sexual Identity, Monozygotic Twins Reared in Discordant Sex Roles and a BBC Follow-up, 11 ARCH. SEXUAL BEH. 181 (1982) [hereinafter BBC Follow-up].
25 BBC Follow-up, supra note __, at 183.
26 Colapinto writes that Money did have further contact with the twins but this was not reported upon. See Colapinto AS NATURE MADE HIM at 149.
27 Diamond & Sigmundson, Sex Reassignment, supra note __; Colapinto, supra note __, at 71.
28 Diamond & Sigmundson, Sex Reassignment, supra note __, at 300.
29 See infra notes __.
30 More remarkably, it now appears that prior to the J/J reports in the 1970s, data were available suggesting that intersex individuals left to develop without surgery, nevertheless, generally made satisfactory adjustments. Significantly, these data gathered in the 1950s by John Money went unreported in the professional literature. Had they been reported it most likely would have mitigated against the adopted surgical method of treatment. See John Colapinto, AS NATURE MADE HIM at 227-229.
31 After the widely publicized report on the J/J case by Diamond and Sigmundson in 1987, Money, in 1998, acknowledged the failure of treatment but theorized that other variables including surgical delay may have caused the child to reject the assigned gender. See MONEY, SEX POLICE, supra note __, at 314-319. Colapinto reported that in 1975 Money knew that Joan had sexuality fantasies about girls, her father reports that Money asked him "how they felt about raising a lesbian," yet this "clinical finding was not in his next report on the twins which appeared in 1975." Colapinto, supra note __, at 70. According to Colapinto, despite the child's refusal to have any further corrective surgery in adolescence and admitting attraction to the female figure, Colapinto described Money's 1975 article as a "more glowing report than the one from three years before." Id.
32 See infra notes __.
33 Diamond had challenged Money's theories since the 1960s, but Money would not be dissuaded by critics. MONEY & EHRHARDT, MAN AND WOMAN, supra note __, at 154 (citing and criticizing works of Diamond (among others) who challenged correctness of early surgical intervention). Money continues to defend his work. See JOHN MONEY, SIN, SCIENCE, AND THE SEX POLICE: ESSAYS ON SEXOLOGY AND SEXSOPHY 314-323 (1997) [hereinafter SEX POLICE] (responding to critics, including Milton Diamond).
34 In 1994, co-author of this article, Milton Diamond, located the twin with the assistance of H. Keith Sigmundson, a psychiatrist with the Ministry of Health in Victoria, British Columbia. Sigmundson had treated J/J under Money's supervision. It took Diamond some dozen years to locate and contact Sigmundson.
35 Although initially reluctant to cooperate with Diamond in following up this case, Sigmundson was finally convinced that to do so was in the greatest interest of medicine. Sigmundson confesses that he knew of Diamond's persistent attempts at contacting him, "but I couldn't bring myself to answer it." Colapinto, supra note __, at 92. He admitted to being "shit-scared of John Money.... He was the big guy. The guru. I didn't know what it would do to my career." Id. John, now a married man, agreed at Sigmundson's and Diamond's urging to cooperate after he learned of his textbook fame "as a success", in his own effort to stop this form of treatment on others. Id. at 94.
36 Diamond & Sigmundson, Sex Reassignment, supra note __, at 300; Colapinto, supra note __, at 92.
37 Diamond & Sigmundson, Sex Reassignment, supra note __, at 300.
40 Colapinto, supra note __, at 70.
41 Colapinto, AS NATURE MADE HIM at 54.
42 Colapinto, supra note __, at 72, 92.
43 Diamond & Sigmundson, Sex Reassignment, supra note __, at 300.
44 Id. at 301. The testicles are the prime source of androgens (male hormones). These substances are needed for normal male development and every-day processes.
45 Id. at 300.
46 Id at 302.
47 Id. at 301. (While J/J's testicles were removed, he still retains his accessory glands --prostate and seminal vesicles-- and these, more than sperm, contribute the bulk of semen.).
48 Diamond & Sigmundson, supra note __.
49 See generally Mark A. Hall, The Defensive Effect of Medical Practice Policies in Malpractice Litigation, 54 SPG- LAW & CONTEMP. PROBS. 119, 126-29 (1991).
50 See NATIONAL COMMISSION FOR THE PROTECTION OF HUMAN SUBJECTS OF BIOMEDICAL AND BEHAVIORAL RESEARCH, THE BELMONT REPORT: ETHICAL PRINCIPLES AND GUIDELINES FOR THE PROTECTION OF HUMAN SUBJECTS OF RESEARCH 3 (1979) [hereinafter BELMONT REPORT]. The Belmont Report remains a cornerstone of the National Institutes of Health's guidelines of human subject research. See PROTECTING HUMAN RESEARCH SUBJECTS INSTITUTIONAL REVIEW BOARD GUIDEBOOK xxi-xxiii & Appendix 6 (DHHS 1993) [hereinafter HUMAN RESEARCH SUBJECTS].
51 BELMONT REPORT, supra note __, at 3.
52 Dale H. Cowan, Innovative Therapy Versus Experimentation, 21 TORT & INS. L.J. 619, 621 (1986) (quoting NATIONAL COMMISSION, REPORT & RECOMMENDATIONS: RESEARCH INVOLVING CHILDREN (DHEW Pub. No. (OS) 77-0004, 1977). See also Dieter Giesen, Civil Liability of Physicians for New Methods of Treatment and Experimentation: A Comparative Examination, 3 MED. L. REV. 22 (1995). See also BARRY FURROW, et. al, 1 HEALTH LAW § 6-5, at 386 (1995) (discussing medical innovation).
53 Cowan, supra note __, at 621; Giesen, supra note __, at 33.
54 Id. at 622.
55 BELMONT REPORT, supra note __, at 3; Giesen, supra note __, at 33. When experimentation follows innovation, institutional review boards provide an early airing and review of ethical issues. No such review occurs when innovative therapy becomes standard in an ad hoc fashion.
56 Others have noted this phenomenon with regard to medical practices that become standard before validation. For instance D. H. SPODICK, 1973. The surgical mystique and the double standard. AMERICAN HEART JOURNAL, 85:579-583. found, after reviewing 70 reports in specialty journals appearing in 1971, 9 of 16 medical treatment studies were controlled; none of 49 studies of surgical intervention involved a controlled study. Consider:
There follows a period during which the innovation (having received professional and public support and legitimization through state endorsement and third-party coverage) achieves the privileged status of a "standard procedure." For a period of time it becomes generally accepted by interested parties as the most appropriate way of proceeding with a particular problem or situation. It is probably incorrect to refer here to the activity as an "innovation" ... since at this stage it has graduated from being just another promising performance (something new with great potential) to the position of being an established and respected activity. Although there is a bias against reporting unsuccessful or untoward performances, they certainly occur but are usually dismissed as infrequent, the result of having poor material to work with, public misunderstanding, and so forth. So entrenched has the activity become that it takes rare courage for any individual or group even to question its effectiveness or desirability. To do so, as we shall see, is to invite retaliation from professional organization interests, public indignation, and even in rare cases sanctions from the state (at 387-388).
John B. McKinlay, From Promising Report to Standard Procedure: Seven Stages in the Career of a Medical Innovation, 59 MILBANK Q. 374, 87-89 (1981). See also Margaret Lent, Note, The Medical and Legal Risks of the Electronic Fetal Monitor, 51 STAN. L. REV. 807 (1999). Lent explains that fetal monitoring to avoid hypoxia during delivery became standard care in the 1970s before scientific validation of its efficacy. Id. at 812. Over the years, use has expanded beyond high risk deliveries so that this technique is now used for 83% of all American births. Id. Now, in twelve randomized control studies, with one exception, none suggest that electronic fetal monitoring decreases fetal mortality. Id. at 813. Moreover, in one study, the fetal monitored group actually suffered an increase in neurological disorders. Id. In sum, the overwhelming scientific studies dispute its efficacy. Id. at 814-15. Nevertheless, routine fetal monitoring with its attendant increased cost in time and effort remains an entrenched practice in delivery, perhaps out of fear of legal liability for abandoning an established standard, id. at 822-23, or "professional inertia." Id. at 808.
57 Nancy M.P. King & Gail Henderson, Treatments of Last Resort: Informed Consent and the Diffusion of New Technology, 42 MERCER L. REV. 1007 (1991). Grimes, D. A. 1993. Technology follies: the uncritical acceptance of medical innovation. JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION), 269: ."The need for ongoing assessment of both new and old medical technologies is undeisputed. Nevertheess, much if not most, of contemporary medical practice still lacks a scientific foundation." at ___.
58 Id. at 1013; see also McKinlay, supra note __, at 376.
59 See McKinlay, supra note __, at 381 (1981); Donald E. Kacmar, The Impact of Computerized Medical Literature Databases on Medical Malpractice Litigation: Time for Another Helling v. Carey Wake-Up Call?, 58 OHIO ST. L.J. 617, 631-32 (1997) (noting that "comments, articles and reports" about a treatment often "snowball into consensus" without validation, and cautioning, "[t]his cycle can impede the adoption of new, better policies and continue adherence to traditional ones").
60 See King & Henderson, supra note __, at 1021 (citing OFFICE OF TECHNOLOGY ASSESSMENT, 98th Cong., 1st Sess., THE IMPACT OF RANDOMIZED CLINICAL TRIALS ON HEALTH POLICY AND MEDICAL PRACTICE: BACKGROUND PAPER (Aug. 1983). See Lent, supra note __, at 811-13.
61 See McKinlay, supra note __, at 376; Kacmar, supra note __, at 642 (commenting "doctors tend to look to informal information sources, such as other colleagues, for answers in lieu of looking outside their own medical circles for new studies, data, or procedures"); King & Henderson, supra note __, at 1022-24 (identifying this phenomenon as part of the conceptual conflict "at the heart of medicine, Is medicine essentially science or essentially treatment?" Id.
Some argue that all medicine should be subject to evidence-based practices rather than anecdotal transmission of procedures. See D.L. SACKETT, D. L., et al., EVIDENCE-BASED MEDICINE: HOW TO PRACTICE & TEACH EBM __ (1997).
62 See Kacmar, supra note __, at 631-32; Wilson & Reiner, supra note __, at 367 (commenting, "As with many clinical paradigm shifts, in the absence of data, adherents of each protocol become increasingly dogmatic that their preferred approach is better for the patient, and that it would be unethical to subject the patient to the other 'less acceptable' treatment. Individual clinicians' attachment to specific treatment regimes result in the ongoing polarization of paradigms.").
63 McKinley, supra note ____, at 379.
64 MILTON DIAMOND, 1998. Intersexuality: Recommendations for Management. ARCHIVES OF SEXUAL BEHAVIOR, 27:634-641. at 638.
65 See SACKETT, supra note ____, at ____ ("Contemporary medicine is increasingly calling for practice to follow data and research rather than anecdote and past practices for the sake of tradition ").
66 The kinds of surgeries performed on infants with genital anomalies are numerous. Sex reassignment is the most radical, but other surgeries also have erotic and reproductive ramifications. See KESSLER, supra note __, at 40-64 (discussing surgical interventions); Diamond & Sigmundson, Management of Intersexuality, supra note __, at 1047-48 (discussing nonsurgical options); MONEY, SEX ERRORS, supra note __, at 52-55 (discussing surgical interventions).
67 John Money, et al., see note _____.
68 Diamond & Sigmundson, Sex Reassignment, supra note __, at 298-99. In his most recent book, Money contends that other researchers early on misstated his contention that sex could be changed up until the age of two; that he had always asserted that "the crucial age is somewhere around eighteen months." MONEY, SEX POLICE, supra note __, at 313. However, he was less clear in his original writings, "the critical period is reached by about the age of eighteen months. By the age of two and one-half years, gender role is already well established." Id. at 312 (quoting his work from 1955). He now contends that J/J's disastrous outcome could be the result of parental delay in surgery until 22 months (among other possibilities). Id. at 319. However, he also notes that J/J's "social reassignment" had occurred at seventeen months. Id. at 315.
69 Dreger, supra note __, at 29 (noting that it is easier to surgically construct a "functional" vagina than a penis).
70 The J/J case might be considered the "ground zero" case for justifying this standard of care.
71 MONEY & EHRHARDT, supra note __.
72 See, e.g., KESSLER, supra note __, at 6-7, 13-14 ("According to all of the specialists interviewed, management of intersexed cases is based upon the theory of gender proposed first by John Money, J.G. Hampson, and J.L. Hampson in 1955 and developed in 1972 by Money and Anke A. Ehrhardt" that "gender identity is changeable until approximately eighteen months of age.").
73 See generally DREGER, supra note __, at 181-82; Dreger, supra note __, at 27; KESSLER, supra note __, at 6.
74 Traumatic injury, especially to male infants, although less common than intersex births, occurs with sufficient frequency to appear in the literature as well. See supra note __.
75 Diamond & Kipnis, Pediatric Ethics, supra note __, at 401; Dreger, supra note __, at 29 (reporting on estimates of 1 in 500, 1 in 1,500, and an even larger group of children with "cosmetically 'unacceptable' genitalia possibly subjected to repair in infancy); cf. W.H. Kutteh, et al., Accuracy of Ultrasonic Detection of the Uterus in Normal Newborn Infants: Implications for Infants with Ambiguous Genitalia, 5 ULTRASOUND OBSTETRICS GYNECOLOGY 109 (Feb. 1995) (estimating 1 in 5,000).
Kessler notes and discusses the difficulty in determining the number of infants with intersex conditions and genitalia anomalies. KESSLER, supra note __, at 135 n. 4.
At any rate, J/J's unusual case is certainly not alone in medical literature. In another case study not lost to follow-up, a child lost his penis through trauma. The child underwent sex reassignment but "in adolescence the patient refused to continue hormonal medication and requested sex reassignment as a boy." Ochoa, supra note __, at 1116. See also Cowley, supra note __, at 64 (reporting biographies and discussing changing standard of care).
76 Dreger explains why males were surgically turned into females whereas females were left as females:
clinicians treating intersex children often talk about vaginas in these children as the absence of a thing, as a space, a "hole," a place to put something. That is precisely why opinion holds that "a functional vagina can be constructed in virtually everyone" -- because it is relatively easy to construct an insensitive hole surgically.
Dreger, supra note __, at 29; see also Diamond & Sigmundson, Sex Reassignment, supra note __, at 298 (citing medical literature). While there was no evidence that the constructed female genitalia would be a better substitute, the simplistic thinking at that time, was that to be a satisfactory sexually functioning woman meant only to have a female appearing pudenda and a vagina suitable to accept a penis.
77 See Wilson & Reiner, supra note __, at 362-63 (describing the treatment protocol of early surgery).
78 See KESSLER, supra note __, at 136 n. 10; Diamond & Sigmundson, Sex Reassignment, supra note __, at 298 (citing medical texts). See e.g., P.K. Donahoe, et al., Clinical Management of Intersex Abnormalities, 28 CURRENT PROBLEMS IN SURGERY 517, 527 (Aug. 1991); KING, supra note __, at 369-70 (reporting prevailing view, "Up to approximately 18 months of age, sexual identity is not established and gender reassignment may be well tolerated by the child"); Timing of Elective Surgery, supra note __; Woodhouse, Ambiguous Genitalia, supra note __, at 689-90 (reporting on prevailing view to reassign gender in cases of micropenis of less than 2 cm).
79 KESSLER, supra note __, 12-32 (commenting that physicians refute recent critics "with nothing more than generalities .... No documentation (anonymous or otherwise) have been offered of adult intersexed who are pleased with their treatment.").; Diamond & Sigmundson, Sex Reassignment, supra note __, at 298; Dreger, supra note __, at 27; Wilson & Reiner, supra note __, at 367. See also Diamond, PEDIATRIC MANAGEMENT at 1025 calling for review of sex reassignments done over the past decades. DAVID E., SANDBERG, HEINO F. L. MEYER-BAHLBURG, GAYA S. ARANOFF, JOHN M. SCONZO, AND TERRY W. HENSLE. 1989. Boys with hypospadias: A survey of behavioral difficulties. JOURNAL OF PEDIATRIC PSYCHOLOGY, 14:491-514 at 510. These authors studied boys with hypospadias and found a higher degree of gender-atypical behaviors than in a group of other boys that had various hospital surgical procedures. However, they also report their findings: "indicating that the penis may be of less significance in the process of gender development than previously thought, does not stand alone. Several studies of normal child development have demonstrated that nonanatomical characteristics, such as hair style and clothing, are critical in children's classification of other individuals (and presumably themselves) according to sex." This study did not compare those with hypospadic surgery with those individuals with hypospadias not having any surgery.
80 Timing of Elective Surgery, supra note __, at 590 (supporting this proposition with four works authored or co-authored by Money and dating between 1957 and 1987: Money et al, Imprinting and the Establishment of Gender Role, 77 ARCH. NEUROL. PSYCH. 333 (1957)); MONEY & EHRHARDT, MAN & WOMAN, supra note __; John Money & B.F. Norman, Gender Identity and Gender Transposition: Longitudinal Outcome Study of 24 Male Hermaphrodites Assigned As Boys, 13 J. SEX MARITAL THERAPY 75 (1987)).
81 Suzanne Kessler has written of Money's dominance in the field:
Almost all of the published literature of intersexed infant case management has been written or co-written by one researcher, John Money .... Even the publications that are produced independently of Money reference him and reiterate his management philosophy.... Even though psychologists fiercely argue issues of gender identity and gender development, doctors who treat intersexed infants seem untouched by those debates .... Why Money has been so single-handedly successful in promoting his ideas about gender is a question worthy of a separate and substantial debate.
KESSLER, supra note __, at 136 n. 10. See also Diamond & Sigmundson, Sex Reassignment, supra note __, at 298 (describing Money's dominance); DREGER, supra note __, at 181-82 (describing dominance of Money in developing the standards of care for intersex infants); Kitzinger, supra note __ (discussing Money's dominance).
Money's views have changed somewhat although he still approves sex reassignment even in cases of traumatic amputation of the penis. See MONEY, SEX ERRORS OF THE BODY AND RELATED SYNDROMES, 1994 , at 84 (writing of total loss of penis: "All in all, it is a difficult situation, regardless of the sex of rearing[,]" and on reassignment generally: "the most expeditious rule to follow is that no child, after the toddler age, should have a sex reassignment imposed on the basis of a [physician imposed] dogmatically held principle.").
82 See William Reiner, Sex Assignment in the Neonate With Intersex or Inadequate Genitalia, AMER. J. OF DISEASES OF CHILDREN 1044 (Oct. 1999) (discussing problem that children will reject the sex of rearing and commenting "surgical reduction of an enlarged clitoris can at times damage sensation and thus reduce orgasmic potential and genital pleasure and, like ablation of the testes is irreversible."); Dreger, supra note __, at 28.
83 AARONSON, I. A. 1992. Sexual differentiation and intersexuality. In P. Kelalis, P., L. R. King and A. B. Belman (eds.), CLINICAL PEDIATRIC UROLOGY, pp. 977-1014, at 1005, 1007, W. B. Saunders, Philadelphia. KESSLER, supra note __, at 49; Dreger, History, supra note __, at 349 (commenting on standard care for clitoral surgery, "If her clitoris is longer than 1 centimeter stretched at birth, surgeons will seek to surgically reduce it because they think that it will bother the child's parents and interfere with bonding and gender identity formation.").
84 See Wilson & Reiner, supra note __, at 363; Sherri A. Groveman, The Hanukkah Bush: Ethical Implications in the Clinical Management of Intersex, 9 J. CLINICAL ETHICS 356, 357-59 (1998). See also MONEY & EHRHARDT, MAN & WOMAN, supra note __, at __; MONEY, SEX ERRORS, supra note __, at __. There is no evidence presented by Money et al. that parents of children born with physical handicaps are any less bonded or otherwise protective or loving to their children. KESSLER, supra note ____, at 91, on the other hand, presents cases where the parents accept the intersex condition if it is presented well or have severe misgivings for giving in to the physicians' urging for surgery. There also are studies that show that children might be aware of the appearance of their own or peer's genitals but don't consider them crucial for classification of gender until about the age of 9 (RONALD GOLDMAN, AND JULIETTE GOLDMAN. 1982. CHILDREN'S SEXUAL THINKING: A COMPARATIVE STUDY OF CHILDREN AGED 5 TO 15 YEARS IN AUSTRALIA, NORTH AMERICA, BRITAIN, AND SWEDEN. Routledge & Kegan Paul, London, England.)
85 See Reiner, Sex Assignment, supra note __; Dreger, supra note __, at 32 (noting a lack of long-term follow-up on females undergoing clitoral surgery); Diamond & Sigmundson, Management of Intersexuality, supra note __, at 1047; Cowley, supra note __, at 66 (reporting on study of female pseudohermaphrodites (genetic females born with masculinized external sex organs) wherein five of twelve surgically reduced clitorises "had withered and died" as a result of surgical intervention). Annie Green, writes: "Thirty-two years have passed since my clitoris was taken from me. Though I was too young to be able now to recall the event, I feel that I will be grieving the loss for the rest of my life." Annie Green, My Beautiful Clitoris, 2 CHRYSALIS 12 (1997). And Cheryl Chase, an advocate for the intersexed, warns that better clitoral surgery is not the proper response to an enlarged phallus. Cheryl Chase, Surgical Progress Is Not the Answer to Intersexuality, 9 J. CLIN. ETHICS 385, 386-87 (1998). Physicians practicing today acknowledge the surgical techniques of just a decade ago on clitoral surgery yielded poor results. The comments of Associate Professor of Urology and Pediatrics Laurence Baskin in response to a visit by ISNA members to the University of California, San Francisco medical school is revealing:
Baskin admits that surgical technique in the past was not optimal. "The surgery was done ... by very well intended physicians, but we didn't understand the nerve supply well. We started to understand the nerve supply [to the clitoris] 10 years ago."
Althaea Yronwode, Intersex Individuals Dispute Wisdom of Surgery on Infants, SYNAPSE, March 11, 1999, available at .[from TRANSGENDER TAPESTRY, 1999:18-21, 32.
Kenneth Glassberg continues to perform clitoral surgery for cosmetic reasons while calling for long-term studies to evaluate the importance of the clitoral tissue in preserving clitoral orgasm. GLASSBERG, 1998. The intersex infant: Early gender assignment and surgical resconstruction. JOURNAL OF PEDIATRIC AND ADOLESCENT GYNECOLOGY, 11:151-154. at 153.
86 See generally Joanne A. Liu, When Law and Culture Clash: Female Genital Mutilation, A Traditional Practice Gaining Recognition as a Global Concern, 11 N.Y. INT'L. L. REV. 71 (1998); Joleen C. Lenihan, A Physician's Dilemma, Legal Ramifications of an Unorthodox Surgery, 35 SANTA CLARA L. REV. 953 (1995). Both Kessler and Dreger liken the surgical treatment of ambiguous genitalia for cosmetic and cultural reasons to female genital mutilation. See KESSLER, supra note __, at 80-83; Dreger, supra note __, at 33-34.
87 Milton Diamond, Pediatric Management of Ambiguous Genitalia and Traumatized Genitalia, __ J. UROLOGY __ (1999); Chase, Surgical Progress, supra note __, at 386; Kipnis & Diamond, supra note __, at 402-03. Meyer-Bahlburg has written: "Some female-assigned patients with a history of clitoromegaly will end up changing their gender to male, and in those cases, a history of clitorectomy or clitoral resection with the reduction of loss of a penile organ altoghether causes great regret. In my clinical experience, also some patients who live as lesbian women would prefer if their enlarged clitoris had been left intact." HEINO F. L. MEYER-BAHLBURG, 1998. Gender assignment in intersexuality. JOURNAL OF PSYCHOLOGY & HUMAN SEXUALITY, 10:1-21 at 12.
88 See Criminalization of Female Genital Mutilation Act, 18 U.S.C.A. § 116.
89 Congressional Findings, at Pub. L. No. 104-208, § 645(a) (2), 110 Stat. 3009-708.
90 18 U.S.C. § 116 (a).
91 18 U.S.C. § 116 (b)(1). See KESSLER, supra note __, at 81-82 (commenting on ISNA position that the language is sufficiently broad to cover some intersex surgeries); Dreger, supra note __, at 34. Some suggest that the act violates the equal protection because it protects females but not males from the customary practice of circumcision. See 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 87, __ (1999).
92 Congresswoman Patricia Schroeder has written against the practice of genital mutilation. Schroeder, 1994. Female genital mutilation-- a form of child abuse. THE NEW ENGLAND JOURNAL OF MEDICINE, 331:739-740.
93 For elaboration on the distinctions between innovation, practice and experimentation, see BELMONT REPORT, supra note __, at 3; Cowen, supra note __; King & Henderson, supra note __; Karine Morin, The Standard of Disclosure in Human Subject Experimentation, 19 J. LEGAL MED. 157, 167 (1998).
94 Pediatrics. 1996. Timing of elective surgery on the genitalia of male children with particular reference to the risks, benefits, and psychological effects of surgery and anesthesia. Pediatrics, 97:590-594.
95 Cowley, supra note __, at 66 (noting scarcity of both medical and psychological studies); Ochoa, supra note __, at 1119 (calling for more study); Woodhouse, supra note __, at 692 (questioning wisdom of sex reassignment surgery in children with micropenis and lack of long-term study); Diamond & Sigmundson, Sex Reassignment, supra note __, at 303 (noting lack of validating studies and need for long-term follow-up); Kipnis & Diamond, Pediatric Ethics, supra note __, at 402; William Reiner, To Be Male or Female -- That is the Question, 151 ARCHIVE OF PEDIATRIC MEDICINE 224, 225 (1997) (calling for more research and cautioning, "It may well be said that conclusions about sex reassignment as described in much of the literature are erroneous secondary to the conspicuous lack of such longitudinal data and appropriate longitudinal analysis."); Justine Marut Schober, A Surgeon's Response to the Intersex Controversy, 9 J. CLIN. ETHICS 393, 394 (1998) (noting lack of long-term studies regarding psychological adjustment); Wilson & Reiner, supra note __, at 367; Diamond, PEDIATRIC MANAGEMENT, The Journal of Urology 162 (1999) at 1026.
96 Reiner, To Be Male or Female, supra note __, at 225; Ochoa, supra note __, at 1119; Woodhouse, supra note __, at 692; William George Reiner, Case Study: Sex Reassignment in a Teenage Girl, 35 J. AM. ACAD. CHILD & ADOLESCENT PSYCH.. 799 (1996) [hereinafter Teenage Girl]; Reiner, Sex Assignment supra note __ (noting his own studies with "18 children who are 46, XY males with totally inadequate phalluses but normal testes that were sex assigned to female, demonstrate that parents tend to be uncomfortable with sex reassignment and children do not behave as typical little girls.").
97 See Diamond & Sigmundson, supra note __, at 302 (noting "cases of infant sex reassignment require inspection after puberty; 5- and 10-year post sex reassignment are still insufficient").
98 The medical community has become polarized on treatment issues. The Journal of Clinical Ethic's symposium issue on intersexuality reported, "The parties in this discussion have become increasingly estranged. Alice Domurat Dreger, guest editor of this special issue ... informs us that she invited some of those who have acted as proponents of infant surgery to present their arguments, but none accepted." Edmund G. Howe, Intersexuality: What Should Careproviders Do Now?, 9 J. CLIN. ETHICS 337, 338 (1998). See also Wilson & Reiner, supra note __, at 367.
99 Wilson and Reiner note that there is "considerable support for the theory that there may be a neurobiologic component to many gender identities" and that gender may be influenced by hormone levels in the brain "prenatally or immediately postnatally" and conclude, "[c]ertainly gender identity involves more than the behaviors of the parents in rearing children." Wilson & Reiner, supra note _-, at 364. See also Milton Diamond, Biological Aspects of Sexual Orientation and Identity, in THE PSYCHOLOGY OF SEXUAL ORIENTATION, BEHAVIOR AND IDENTITY: A HANDBOOK 48 (Greenwood Press, Westport, Connecticut) (L. Diamant & R. McAnulty eds., 1995); M. Hines, Abnormal Sexual Development and Psychosexual Issues, 12 BAILLIER'S CLIN. ENDOCRINOLOGY & METABOLISM, 173, __ (1998) (nevertheless, Hines is reluctant to recommend change in the "standard of care"); S. LeVay, & D.H. Hamer, Evidence for a Biological Influence in Male Homosexuality, SCIENTIFIC AMERICAN 44-49 (May 1994); D. Hamer, & P. Copeland, LIVING WITH GENES: WHY THEY MATTER MORE THAN YOU THINK (1998); LeVay, S., QUEER SCIENCE __ (1996).
100 Diamond and Sigmundson explain:
Most intersex conditions can remain without any surgery at all. A woman with a phallus can enjoy her hypertrophied clitoris and so can her partner. Women with AIS or virilizing CAH who have smaller-than-usual vaginas can be advised to use pressure dilations to fashion one to facilitate coitus; a woman with partial AIS likewise can enjoy a large clitoris. A male with hypospadias might have to sit to urinate without mishap but can function sexually without surgery. A person with a micropenis can satisfy a partner and father children.
Diamond & Sigmundson, Management of Intersexuality, supra note __, at 1049. See also Dreger, supra note __, at 29-32; A. Lev-Ran, Gender Role Differentiation in Hermaphrodites, 3 ARCHIVES SEXUAL BEHAV., 391-424 (1974) (describing numerous cases where individuals adapted to gender atypical genitalia).
101 See KESSLER, supra note __, at 105-32; Dreger, supra note __, at 94.
It is, unfortunately, only recently that it has been revealed that a study of more than 250 intersexed individuals who received no surgical intervention as babies was conducted prior to 1952 but left unpublished in the professional literature. The review by John Money found: "Far from manifesting psychological traumas and mental illnesses, the study showed, the majority of patients rose above their genital handicap and not only made an 'adequate adjustment' to life, but lived in a way virtually indistinguishable from people without genital difference." See JOHN COLAPINTO, at 227. One can only conjecture as to why this study was never mentioned nor considered by its author after its presentation as a senior dissertation at Harvard (available by written application to the Widener Library at Harvard University).
102 Ochoa, supra note __, at 1118-19.
103 See generally HARRY BENJAMIN, THE TRANSSEXUAL PHENOMENON __ (1966); Milton Diamond, Self-Testing Among Transsexuals: A Check on Sexual Identity, 8 J. PSYCH. & HUMAN SEXUALITY 61, __ (1996).
104 See Bockting, W. O., and E. Coleman. 1992. GENDER DYSPHORIA: INTERDISCIPLINARY APPROACHES IN CLINICAL MANAGEMENT, The Haworth Press, New York; Bullough, B., V. L. Bullough, and J. Elias. 1997. GENDER BLENDING. Prometheus Books, Amherst, New York.; Devor, H. 1989. GENDER BLENDING: CONFRONTING THE LIMITS OF DUALITY. Indiana University Press, Bloomington, Indiana.
105 Diamond, Ambiguous and Traumatic, supra note __ at 1023. See also Reiner, To Be Male or Female, supra note __, at 225 (reporting on his ongoing research and stating that he is following fifteen 46 XY children who were castrated at birth due to genital anomalies, stating that although reared as females the patients "do not appear to be classically male or female but display masculine characteristics that are in many cases quite striking"); A recent article reports of one individual who was sex reassigned and, at the age of 28, remains living as a woman. She, however, has a male-identified job and is ambisexually oriented and presently living with a female sexual partner. See Susan J. Bradley, et al., Experiment of Nurture: Ablatio Penis at 2 Months, Sex Reassignment at 7 Months Psychosexual Follow-up in Young Adulthood, 102 PEDIATRICS 1 (1998) (full text available at .
106 Reports of adverse outcomes have been met with ambivalence in the medical community.
More recently, surgeons have been criticized because they have not accorded enough weight to patients' reports of adverse outcomes. There is a psychological reason that careproviders may ignore reports of adverse outcomes: if the claims are true, surgeons would have to acknowledge that performing surgery was a mistake. This would be exceedingly painful. The only way to avoid this pain would be to deny that these claims are true.
Howe, supra note __, at 338.
107 ISNA, Recommendations for Treatment Intersex Infants and Children, available at (last visited April 2, 1999) [hereinafter ISNA Recommendations]. Money reserves particularly harsh criticism for ISNA, labeling the organization as "militantly activist" in advocating raising the intersex child as an "it," which he regards as a step backward. MONEY, SEX, SIN, supra note __, at 320-21. Money misstates ISNA's position. ISNA has never advocated raising children as "its." They advocate sexual assignment but without any surgery. So too does Diamond, advocate raising the child in a clear gender but without cosmetic genital altering surgery. UROLOGY at 1025. Kenneth Glassberg, on the other hand, argues "There are no data to support the benefits of delayed assignment or treatment of these infants and I can't imagine any parent, without whose wholehearted cooperation any treatment program will fail, accepting such an approach."KENNETH I. GLASSBERG, 1999. Editorial: Gender assignment and the pediatric urologist. THE JOURNAL OF UROLOGY, 161:1308-1310. at 1308.
108 See, e.g., Groveman, supra note __, at 356; Chase, supra note __, at 385.
109 See Diamond & Sigmundson, supra note __, at 298 (discussing and citing medical literature recommending sex reassignment based on surgical potential); see also KESSLER, supra note _, at 108-109 (discussing criteria for surgery in females and males); Donahoe, supra note __, at 527 (commenting, "[g]enetic females should always be raised as females, preserving reproductive potential, regardless of how severely the patients are virilized. In the genetic male, however, the gender of assignment is based on the infant's anatomy, predominantly the size of the penis"); Newman, supra note __, at 645 (commenting, "In practical terms, regardless of the genotype, most children with ambiguous genitalia are best suited for the female role.").
110 See KESSLER, supra note __, at 34-35; MONEY, MAN/WOMAN, supra note __, at 178-79; MONEY, SEX ERRORS, supra note __, at 82.
111 See, e.g., Donahoe, supra note __, at 527 ("[I]t cannot be overly stressed that the 46 XY [genetic male] Karyotype does not dictate rearing the child as a male if the phallus is inadequate in size.... If the phallus length is less that 2.0 cm and certainly less that 1.5 cm, we are quite concerned...."); Lowell King, supra note __, at 369.
112 Some but not all intersex and ambiguous conditions impact reproductive capacity. Standard care encourages preservation of female reproductive capacity but decisions as to males is based on penis size, not reproductive capacity. See Patricia K. Donahoe, Clinical Management of Intersex Abnormalities, 28 CURRENT PROBLEMS SURGERY 517, 527 (Aug. 1991).
113 MONEY, SEX ERRORS, 2nd ed, supra note __, at 66.
114 See generally FURROW, supra note __, at § 6-2, at 361; Sam A. McConkey, Simplifying the Law in Medical Malpractice: The Use of Practice Guidelines as the Standard of Care in Medical Malpractice Litigation, 97 W. VA. L. REV. 491, 496-97 (1995).
115 The T. J. Hooper, 60 F.2d 737 (2d Cir. 1932).
116 Id. at 739.
117 Texas Pac. Ry. v. Behymer, 189 U.S. 468, 470 (1903) (Holmes, J.).
118 60 F.2d at 739.
119 Toth v. Community Hospital at Glen Cove, 239 N.E.2d 368, 373 (N.Y. App. 1968); FURROW, supra note __, at 359-62.
120 Gorab v. Zook, 943 P.2d 423, 427 (Colo. 1997) (en banc).
121 Id. (quoting Colorado Jury Instruction 15:2).
122 See Turner v. Children's Hosp., Inc., 602 N.E.2d 423, 427 (Ohio App. 1991).
123 Id. at 427.
124 See Harris v. Groth, 663 P.2d 113, 115 (Wash. 1983) (en banc); See generally Hall, supra note __, at 126-27 (noting distinction between "garden-variety tort cases" where jury is "ultimate arbiter" and medical malpractice where "jurors are instructed to judge physicians not by the jury's sense of what is right, but by the custom that prevails in the profession"); Gary T. Schwartz, Medical Malpractice, Tort, Contract and Managed Care, 1998 U. ILL. L. REV. 885, 890.
The existence of a uniform standard of care is probably more of a legal fiction than medical profession fact. See Hall, supra note __, at 121 n.10, 128-30 n. 38 (commenting "the law has always presumed the existence of that which does not exist -- established, concrete professional standards").
125 Craft v. Peebles, 893 P.2d 138, 147 (Haw. 1995) ("It is well settled that in medical malpractice actions, the question of negligence must be decided by reference to relevant standards of care for which plaintiff carries the burden of proving through expert testimony."). See also FURROW, supra note __, at 361 (commenting that "[t]he standards for evaluating the deliver of professional medical services are not normally established by either judge or jury").
126 Helling v. Carey 519 P.2d 981 (Wash. 1974) (citing The T.J. Hooper, 60 F.2d 737 (2d Cir. 1932) (holding that irrespective of medical standards, reasonable prudence would require providing inexpensive pressure tests to all opthalmological patients where the test is inexpensive and simple).
127 Id. at 982.
129 Id. at 983.
132 In Harris v. Robert C. Groth, M.D., Inc., 663 P.2d 113 (1983), the Washington Supreme Court recounted the professional and legislative reaction to its decision in Helling v. Carey, 519 P.2d 981 (Wash. 1974). Harris, 663 P.2d at 115-16. Notably, Harris held that even following the legislature's purported overruling of Helling, Washington continues to hold to a "reasonably prudent" physician and that "the degree of care actually practiced by members of the profession is only some evidence of what is reasonably prudent, it is not dispositive." Id. at 120. See Lent, supra note __, at 829-30.
133 FURROW, supra note __, at 361 ("Most jurisdictions ... have been reluctant to follow Helling in replacing the established medical standard of care with a case-by-case judicial balancing."). Cases in apparent accord with Helling include: United Blood Services, Div. of Blood Systems, Inc. v. Quintana, 827 P.2d 509, 520 (Colo. 1992) (en banc) ("If the standard adopted by a practicing profession were to be deemed conclusive proof of due care, the profession itself would be permitted to set the measure of its own legal liability, even though that measure might be far below a level of care readily attainable through the adoption of practices and procedures substantially more effective in protecting others against harm than the self-decreed standard of the profession." but holding that expert testimony is necessary to establish that one school of practice's standard of care is unreasonably deficient); Nowatske v. Osterloh, 543 N.W.2d 265 (Wis. 1996) (denying that traditional malpractice standard differs from ordinary negligence); Townsend v. Kiracoff, 545 F. Supp. 465 (D. Colo. 1982) (citing The T.J. Hooper, 60 F.2d 737 (2d Cir. 1932) ("even if the defendant's affidavits and evidentiary materials could establish that the hospital acted in accordance with the standard of care and custom of the community of Colorado hospitals, the plaintiff would still be entitled to prove at trial that the entire community's custom is negligent"); Turner v. Children's Hospital, 602 N.E.2d 423, 427 (Ohio App. 1991) (stating, "although customary practice is evidence of what a reasonably prudent physician would do under like or similar circumstances, it is not conclusive in determining the applicable standard required.").
134 See, e.g., Osborn v. Irwin Memorial Blood Bank, 7 Cal. Rptr.2d 101, 125-126 (Cal. App. 1992) (rejecting Helling v. Carey, and noting that most commentary and case law has been critical of the case); Schwartz, supra note __, at 890; Clark Havighurst, Private Reform of Tort-Law Dogma: Market Opportunities and Legal Obstacles, 49 LAW & CONTEMP. PROBS 143, 159 n. 45 (1986). But see Dan Dobbs, et al., Prosser and Keeton on the Law of Torts § 33 at 30 n. 53 (noting "increasing number of courts rejecting customary practice standard in favor of reasonable care or reasonably prudent doctor standard" and citing cases) (5th ed. 1988 pocket part); Theodore Silver, One Hundred Years of Harmful Error: The Historical Jurisprudence of Medical Malpractice, 1992 WIS. L. REV. 1193,1212-1219 (arguing for a return to negligence principles).
135 Schwartz, supra note __, at 890.; see also Gary T. Schwartz, The Beginning and the Possible End of the Rise of Modern American Tort Law, 26 GA. L. REV. 601, 663-64 (1992) [hereinafter Modern American Tort Law] (noting that Helling v. Carey has not garnered support, "[malpractice] conservatism has largely survived the 1980s"); cf. Richard E. Leahy, Rational Health Policy and the Legal Standard of Care: A Call for Judicial Deference to Medical Practice Guidelines, 77 CALIF. L. REV. 1483, 1502-06 (1989) (arguing that courts and juries have too much independence to establish and judge the medical standard of care and proposing judicial deference to professionally promulgated guidelines).
136 See Kacmar, supra note __, at 631-32 (noting in malpractice actions there is substantial reliance on the medical profession to define its own standard of care and lack of incentive to keep abreast); Silver, supra note __, at 1212-19; Leahy supra note __, at 1495-97.
137 Kacmar, supra note __, at 643.
138 See Rooney v. Medical Center Hosp. of Vermont, 649 A.2d 756, 759 (Vt. 1994) ("To practice the profession of medicine, a physician is not required to be possessed of the extraordinary knowledge and ability that belongs to the few practitioners of rare endowments. But the physician is required to keep abreast of new techniques and knowledge and to practice in accordance with the approved methods and means of treatment in general use [in his field]."). See also Kacmar, supra note __, at 641.
139 Id. (citing Angela Roddey Holder, Failure to "Keep up" as Negligence, 224 JAMA 1461, 1462 (1973)).
140 Schwartz, American Tort Law, supra note __, at 664.
141 See Hood v. Philips, 537 S.W.2d 291, 294 (Tex. App. 1976) (holding "a physician is not guilty of malpractice where the method of treatment used is supported by a respectable minority of physicians, as long as the physician has adhered to the acceptable procedures of administering treatment as espoused by that minority"). See also Schwartz, American Tort Law, supra note __, at 664-65 (commenting that traditional tort law has held that "when intelligent doctors can disagree, the defendant cannot be found guilty of malpractice"); Joan P. Dailey, Comment, The Two Schools of Thought and Informed Consent Doctrines in Pennsylvania: A Model for Integration, 98 DICK. L. REV. 713 (1994).
142 An alternative view is possible, one in which the two schools might be measured against one another. One court reasoned that where two schools differ, "plaintiff should be permitted to present expert opinion testimony that the standard of care adopted by the school of practice to which the defendant adheres is unreasonably deficient by not incorporating readily available practices and procedures substantially more protective against the harm caused to the plaintiff than the standard of care adopted by the defendant's school of practice." United Blood Services v. Quintana, 827 P.2d 509, 521 (Colo. 1992) (en banc).
143 Furrow notes that "clinical innovation allows physicians to vary standard treatment to suit the needs of a particular patient, where the patient presents a particular problem or desperate situation." FURROW, supra note __, at § 6-5, at 385. However, he notes that courts rarely allow such a defense except in instances "when conventional treatments are largely ineffective or where the patient is terminally ill and has little to lose by experimentation with potentially useful treatments." Id.
144 Osborn v. Irwin Memorial Blood Bank, 7 Cal. Rptr.2d 101, 125-26 (Cal. App. 1992) (citations omitted).
145 In the case of surgical treatment for cases of ambiguous it is probably more a matter of "following the leader" rather than ignorance.
146 See supra notes __.
147 MONEY, SEX ERRORS, 1st ed., supra note __, at 48.
148 MONEY, SEX ERRORS, 1st ed., supra note __, at 93.
149 King & Henderson, supra note __, at 1021; see also Lent, supra note __, at 808.
150 United Blood Services v. Quintana, 827 P.2d 509, 520 (Colo. 1992) (en banc) (quoting The T.J. Hooper, 60 F.2d 747, 740 (2d Cir. 1032).
152 See Sackett et al, supra note ____ at 115-116. Four guides were offered for the evaluation of a proposed medical guideline: 1) Were all important decision options and outcomes clearly specified?; 2) Was the evidence relevant to each decision option identified, validated and combined in a sensible and explicit way?; 3) Are the relative preferences that key stakeholders attach to the outcomes of decisions (including benefits, risks and costs) identified and explicitly considered?; 4) Is the guideline resistant to clinically sensible variations in practice?
153 See Kacmar, supra note __, at 633-39.
154 See generally RUTH R. FADEN & TOM L. BEAUCHAMP, A HISTORY AND THEORY OF INFORMED CONSENT (1986) (tracing history and discussing moral underpinnings of informed consent doctrine in medical tradition).
155 See Susan D. Hawkins, Protecting the Rights and Interests of Competent Minors in Litigated Medical Treatment Disputes, 64 FORDHAM L. REV. 2075, 2093-94 (1996)
156 Cruzan v. Director, Mo. Dep't. of Health, 497 U.S. 261, 269 (1990) (quoting Union Pacific R. Co. v. Botsford, 141 U.S. 250, 251 (1891).
157 See Hawkins, supra note __, at 2094-2102 (other interests include privacy, to be free of unwanted physical invasions, and preservation of life); James Bopp, Jr. & Richard E. Coleson, A Critique of Family Members as Proxy Decisionmakers Without Legal Limits, 12 ISSUES L. & MED. 133, 134-35 (1996). See also Fiori v. Pennsylvania, 673 A.2d 905, 909-10 (Pa. 1996) (commenting, "[t]he right to refuse medical treatment has deep roots in our common law.... [f]rom this right to be free from bodily invasion developed the doctrine of informed consent").
158 Turner v. Children's Hospital, Inc., 602 N.E.2d 423, 431 (Ohio App. 1991).
159 Carr v. Strode, 904 P.2d 489, 493 (Haw. 1995).
160 Wheeldon v. Madison, 374 N.W.2d 367, 375 (S.D. 1985) (citing Canterbury v. Spence, 464 F.2d 772, 787 (D.C. Cir. 1972)).
161 See generally Annotation, Modern Status of Views as to General measure of Physician's Duty to Inform Patient of Risks of Proposed Treatment, 88 A.L.R.3d 1008, §§ 3, 6-7; William J. McNichols, Informed Consent Liability in a "Material Information" Jurisdiction: What Does the Future Portend?, 48 OKLA. L. REV. 711, 716-17 (1995) (describing state trends); Richard A. Heinemann, Pushing the Limits of Informed Consent: Johnson v. Kokemoor and Physician Specific Disclosure, 1997 WISC. L. REV. 1079, 1082-86 (discussing patient-oriented standard and describing trends).
162 See Carr v. Strode, 904 P.2d 489, 490 (Haw. 1995) (tracing evolution of standard and overruling prior case adopting physician-oriented standard). The seminal case rejecting the physician-oriented standard and adopting the patient-oriented standard is Canterbury v. Spence, 464 F.2d 772 (D.C. Cir. 1972). See also Congrove v. Holmes, 308 N.E.2d 765 (Ohio 1973); Arena v. Gingrich, 748 P.2d 547 (Or. 1988); Corrigan v. Methodist Hosp., 869 F. Supp. 1202 (E.D.Pa. 1994); Wilkinson v. Vesey, 295 A.2d 676 (R.I. 1972); Shadrick v. Coker, 963 S.W.2d 726 (Tenn. 1998); Stripling v. McKinley, 746 S.W.2d 502, aff'd, 763 S.W.2d 407 (Tex. 1988).
163 See Gorab v. Zook, 943 P.2d 423, 428 n. 5 (Colo. 1997) (en banc) (noting evidentiary differences between patient-oriented informed consent doctrine and medical community standard of care).
164 Id. (emphasis in original). Physicians must provide information concerning "material risks" and, at least in some jurisdictions, they must provide information about alternative treatments. See Doe v. Johnston, 476 N.W.2d 28, 30-31 (Iowa 1991).
165 Cooper v. Roberts, 286 A.2d 647, 650 (Pa. 1971) ("As the patient must bear the expense, pain and suffering of any injury from medical treatment, his right to know all material facts pertaining to the proposed treatment cannot be dependent upon the self-imposed standards of the medical profession.").
Cobbs v. Grant, 8 Cal 3d 229, 104 Cal. Rptr. 308, 611 P.2d 598 (1993) ("A medical doctor, being the expert, appreciates the risks inherent in the procedure he is prescribing, the risks of the decision not to undergo treatment and the probability of a successful outcome of the treatment . . . The weighing of these risks against the individual subjective fears and hopes of the patient is not an expert skill. Such evaluation and decision is a nonmedical judgement reserved to the patient alone.") This language explicitly requires physicians to explain the probability of success and requires the physician to tell the patient what he means by success. GEORGE J. ANNAS, 1994. Informed consent, cancer, and truth in prognosis. THE NEW ENGLAND JOURNAL OF MEDICINE, 330:223-225, at 225.
166 GEORGE J. ANNAS, 1994. Informed consent, cancer, and truth in prognosis. THE NEW ENGLAND JOURNAL OF MEDICINE, 330:223-225, at 225. ("Of course, the doctrine of informed consent is based on the recognition that people are not all the same and that physicians must let patients decide about treatment options so that they do not treat them "always the same way for everybody alike.")
167 Carr, 904 P.2d at 485.
168 Canterbury, 464 F.2d at 789.
169 See Nishi v. Hartwell, 473 P.2d 116 (Haw. 1970), overruled on other grounds, Carr v. Strode, 904 P.2d 489 (Haw. 1995) (patient's fear and apprehension justified not telling him of "collateral hazard" of paralysis associated with diagnostic procedure regarding aneurysm).
170 Nishi, 473 P.2d at 121.
171 See McNichols, supra note __, at 728-79 & n. 97 (noting scarcity of decisions based upon therapeutic privilege defense). Compare Roberts v. Wood, 206 F. Supp. 579, 583 (Ala. 1962) (finding disclosure adequate and noting, "Doctors frequently tailor the extent of their pre-operative warnings to the particular patient, and with this I can find no fault. Not only is much of the risk of a technical nature beyond the patient's understanding, but the anxiety, apprehension, and fear generated by a full disclosure may have a very detrimental effect on some patients.") with Cornfeld v. Tongen, 262 N.W.2d 684, 700 (Minn. 1977) (rejecting therapeutic privilege defense where doctor testified that "he did not want to concern her with what he regarded as a foregone conclusion");
172 See Canterbury, 464 F.2d at 92; McNichols, supra note __, at 728.
173 Rosebush v. Oakland County Prosecutor, 491 N.W.2d 633, 636 (Mich. App. 1992) (commenting, "[t]he right to refuse lifesaving medical treatment is not lost because of incompetence or the youth of the patient"); Custody of a Minor, 393 N.E.2d 836, 844 (Mass. 1979) (stating that incompetent persons enjoy the same panoply of rights and choices of competent persons).
174 See generally Committee on Bioethics, American Academy of Pediatrics, Informed Consent, Parental Permission, and Assent in Pediatric Practice, POLICY REFERENCE GUIDE 496 (1997) (also available at 95 PEDIATRICS 314 (Feb. 1995)); Joseph P. McMenamin & Karen Iezzi Michael, Children As Patients, in LEGAL MEDICINE 396 (American College of Legal Medicine, ed., 4th ed. 1998); Bopp & Coleson, supra note __; Dena S. Davis, Genetic Dilemmas and the Child's Right to an Open Future, 28 RUTGERS L.J. 549 (1997); Leslie P. Francis, The Roles of the Family in Making Health Care Decisions for Incompetent Patients, 1992 UTAH L. REV. 861; Leonard H. Glantz, Research with Children, 24 AM. J.L. & MED. 213 (1998); Marcia Gottesman, Civil Liability for Failing to Provide 'Medically Indicated Treatment" to a Disabled Infant, 20 FAM. L.Q. 61 (1986); Louise Harmon, Falling Off the Vine: Legal Fictions and the Doctrine of Substituted Judgment, 100 YALE L.J. 1 (1990); Hawkins, supra note __; Robert J. Katerberg, Institutional Review Boards, Research on Children, and Informed Consent of Parents: Walking the Tightrope Between Encouraging Vital Experiments and Protecting Subjects' Rights, 24 J.C. & U.L. 545 (1998); Ann MacLean Massie, Withdrawal of Treatment for Minors in a Persistent Vegetative State: Parents Should Decide, 35 ARIZ. L. REV. 173 (1993); Andrew Popper, Averting Malpractice By Information: Informed Consent in the Pediatric Treatment Environment, 47 DEPAUL L. REV. 819 (1998); Elyn R. Saks, Competency to Refuse Treatment, 69 N.C. L. REV. 945 (1991); Robyn S. Shapiro & Richard Barthel, Infant Care Review Committees: An Effective Approach to the Baby Doe Dilemma?, 37 HASTINGS L.J. 827 (1986); Walter Wadlington, Medical Decision Making For And By Children: Tensions Between Parent, State, and Child, 1994 U. ILL. L. REV. 311; Amy Elizabeth Bruskey, Comment, Making Decisions for Deaf Children Regarding Cochlear Implants: The Legal Ramifications of Recognizing Deafness as a Culture Rather than a Disability, 1995 WISC. L. REV. 235; Rachel M. Dufault, Comment, Bone Marrow Donations By Children: Rethinking the Legal Framework in Light of Curran v. Bosze, 24 CONN. L. REV. 211 (1991); Elizabeth J. Sher, Note, Choosing for Children: Adjudicating Medical Care Disputes Between Parents and the State, 58 N.Y.U. L. REV. 157 (1983).
175 Conceptually, the parent's duty to make decisions is sometimes characterized as a parental right. When the law views the parental obligation to make decisions as a parental right, then the child's rights might be subordinated to their parents. See RICHARD H. NICHOLSON, MEDICAL RESEARCH WITH CHILDREN: ETHICS, LAW, AND PRACTICE 132 (1986). Whether viewed as a right or duty, parental decisions are cloaked in deference arising out of the right to privacy and the right to parental autonomy under the Fourteenth Amendment. See, e.g., Wisconsin v. Yoder, 406 U.S. 205 (1972).
176 The judicial decision maker "must 'substitute itself as nearly as may be [possible] for the incompetent and ... act upon the same motives and considerations as would have moved' the incompetent." Dufault, supra note __, at 221-22 (quoting City Bank Farmers Trust Co. v. McGowan, 323 U.S. 594, 599 (1945).
177 "The fundamental difference between the use of substituted judgment and the 'best interests of the child test' under such conditions lies not in the decision reached, which may be the same, but in the vantage from which the decision is reached." Id. at 227. See Rosebush v. Oakland County Prosecutor, 491 N.W.2d 633, 639 (Mich. App. 1992) (discussing difference and commenting that preference in surrogate decision making is to use a substituted judgment standard and best interest standard where a preference was never stated or is otherwise unknown). See also Catherine L. Annas, Irreversible Error: The Power and Prejudice of Female Genital Mutilation, 12 J. CONTEMP. HEALTH L. & POL'Y 325, 337 n. 123 (1996).
178 Dufault, supra note __, at 214-215.
179 Parham v. J.R., 442 U.S. 584, 602 (1979); In re. L.H.R. 321 S.E.2d 716 (Ga. 1984) ; see also Hawkins, supra note __, at 2081; Sher, supra note __, at 171-72; Dufault, supra note __, at 218-19.
180 Fiori v. Pennsylvania, 673 A.2d 905, 912 (Pa. 1996) (acknowledging right of mother to order removal of life support of adult son in persistent vegetative state).
181 See In re Doe, 418 S.E.2d 3, 7 n. 6 (Ga. 1992) (commenting that parents do not have an "absolute right to make medical decisions for their children"); McMenamin & Michael, supra note __, at 397; Dufault, supra note __, at 212-15 (tracing historical perspective of parental right to make medical decisions); NICHOLSON, supra note __, at 133-34 (discussing limits of parental authority). See also Povenmire, supra note __, at __.
182 See Rosebush v. Oakland County Prosecutor, 491 N.W.2d 633, 637 (Mich. App. 1992) ("We hold that the decision-making process should generally occur in the clinical setting without resort to the courts, but that courts should be available to assist in decision making when an impasse is reached.").
183 See Sher, supra note __, at 168-69 (noting that the courts resolve conflicts between the state and the parent and "few courts recognize that children have an interest to articulate independent of their parents or the state").
184 See generally ROGER B. DWORKIN, LIMITS: THE ROLE OF THE LAW IN BIOETHICAL DECISION MAKING 54-60 (1996) (approving the increasingly adopted judicial case-by-case approach in involuntary sterilization cases); Povenmire, supra note __, at __.
185 See generally Roberta Cepko, Involuntary Sterilization of Mentally Disabled Women, 8 BERKELEY WOMEN'S L.J. 122 (1993) (describing statutory and case law approaches to sterilization of mentally disabled); Elizabeth Scott, Sterilization of Mentally Retarded Persons: Reproductive Rights and Family Privacy, 1986 DUKE L.J. 806, 818 (noting "most laws ... embody strict procedural and substantive requirements that create a strong presumption against sterilization").
186 DWORKIN, supra note __, at 58; Scott, supra note __, at 848 n. 140. See Haw. Rev. Stat. § 560:5-602 ("[p]ersons who are wards and who have attained the age of eighteen years have the legal right to be sterilized .... [I]n no event, however, shall wards be sterilized without court approval .... unless sterilization occurs as part of emergency medical treatment").
187 In the Matter of Romero, 790 P.2d 819 (Colo. 1990) (en banc) (denying guardian's request to sterilize brain-injured adult).
188 Estate of C.W., 640 A.2d 427, 428 (Pa. Super. 1994) (affirming mother's request to sterilize adult mentally retarded daughter).
189 See Dreger, supra note __, at 28-29 (noting medical tendency to preserve female reproductive capacity but not male reproductive capacity).
190 See KESSLER, supra note __, at 77-104, 132; Dreger, History, supra note __, at 353; Kipnis & Diamond, supra note __, at 406-07. See also Povenmire, supra note __, at __ (arguing for a heightened ethical evaluation in male circumcision cases as well).
191 Povenmire proposes this standard for evaluating male circumcision decisions, causing parents to weigh the medical justifications for the procedure against the procedure's irreversibility and the child's inability to consent. See Povenmire, supra note __, at __.
192 See, e.g., Rosebush v. Oakland County Prosecutor, 491 N.W.2d 633, 637 (Mich. App. 1992) (reviewing jurisdictions and holding that no judicial application is required prior to removing life-support from minor in persistent vegetative state); In re L.R.H., 321 S.E.2d 716 (Ga. 1984) (accord, holding that no prior judicial approval is necessary prior to termination of life-support of minor).
193 See, e.g., In re Sampson, 317 N.Y.S.2d 631 (Fam. Ct. 1970), aff'd, 323 N.Y.S.2d 253 (1971) (ordering surgery to correct facial deformity despite only psychosocial risk for nontreatment alternative and surgical risk to health); State v. Perricone, 181 A.2d 751 (1962); Jehovah's Witnesses v. King County Hosp., 278 F. Supp. 488 (W.D. Wash. 1967), aff'd, 390 U.S. 598 (1968); see generally Sher, supra note __, at 161 notes 19-23 (collecting cases).
194 See, e.g., A.D.H. v. State Dep't of Human Resources, 640 So.2d 969 (Ala. App. 1994) (ordering AZT treatment for AIDS); In re Petra B., 265 Cal. Rptr. 342 (Cal. App. 1989) (ordering medical treatment for burns where parents are treating child with herbal remedies); Custody of a Minor, 379 N.E.2d 1053 (Mass. 1978) (holding that child's best hope for recovery required chemotherapy despite and over parental concern for discomfort and parental pessimism); In re Vasko, 263 N.Y.S. 552 (1933) (ordering surgical removal of cancerous eye despite parental objection); In re Rotkowitz, 25 N.Y.S.2d 624 (N.Y. Misc. 1941) (ordering operation on foot to correct progressive deformity); but see In re Seiferth, 127 N.E.2d 820 (N.Y. 1955) (upholding right of parent to decide not to treat cleft palate and harelip); In re Tuttendario, 21 Pa. Dist. 561 (Pa. 1911) (holding parents could decide to withhold surgical intervention for deformity caused by rickets because they feared possible outcomes).
195 Petra B v. Eric B., 265 Cal. Rptr. 342, 346 (Cal. App. 1989) (quoting In re Philip B. 156 Cal. Rptr. 48 (Cal. App. 1979)).
196 See generally Kenneth Kipnis, Parental Refusals of Medical Treatment on Religious Grounds: Pediatric Ethics and the Children of Christian Scientists, in LIBERTY, EQUALITY AND PLURALITY 268, 272-73 (Larry May, et al., eds. 1997); Protecting Human Research Subjects, supra note __, at 6-19 (discussing considerations when children are subjects of research); Karine Morin, The Standard of Disclosure in Human Subject Experimentation, 19 J. Legal Med. 157, 189-90 (1998). See also Petra B, 265 Cal. Rptr. at 346 (state may intervene upon consideration of the "seriousness of the harm," "the evaluation for the treatment by the medical profession," the "risks involved in medically treating the child," and the "expressed preferences of the child").
197 See Scott, supra note __, at 849 n. 142 (noting the difficulty in assessing "how someone will function or act in the future").
198 See Joel Feinberg, The Child's Right to an Open Future, in WHOSE CHILD? CHILDREN'S RIGHTS, PARENTAL AUTHORITY, AND STATE POWER 124 (William Aiken & Hugh LaFollette, eds., 1980) [hereinafter WHOSE CHILD?].
199 Id. at 126, 151 ("if the child's future is left open as much as possible for his own finished self to determine, the fortunate adult that emerges will already have achieved, without paradox, a certain amount of self-fulfillment, a consequence in large part of his own already autonomous choices in promotion of his own natural preferences."); Dufault, supra note ___, at 218-19.
200 NICHOLSON, supra note __, at 131.
201 Kipnis, supra note __, at 273.
203 Patricia Schroeder,. 1994. Female genital mutilation-- a form of child abuse. THE NEW ENGLAND JOURNAL OF MEDICINE, 331:739-740. See also K. Rossiter & S. Diehl. These nurses consider it child abuse if the parents do not allow surgery on their intersexed infants. 1998. Gender reassignment in children: Ethical conflicts in surrogate decision making. JOURNAL OF GYNECOLOGIC AND NEONATAL NURSING, 27:59-62.
204 Kipnis, supra note __, at 273
206 Morin, supra note __, at 191
207 Reiner & Wilson, supra note __, at 368 (commenting, "[i]t is interesting to note that ambiguous genitalia are essentially the only congenital anomalies viewed as a surgical emergency for cosmetic reasons.").
In the John/Joan case, the child's parents recalled how rushed they were to make the agonizing decision, they received a letter from Money suggesting they were "procrastinating." They polled their family and their pediatrician all who counseled against the surgery. But, they were persuaded by "Dr. Money's conviction that the procedure had every chance for success." Colapinto, supra note __, at 64.
208 KESSLER, supra note __, at 17-21; Cowley, supra note __, at 66.
209 Dreger, supra note __, at 30 (quoting Patricia K. Donahoe, et al., Clinical Management of Intersex Abnormalities, 28 CURRENT PROBLEMS IN SURGERY 515, 540 (1991). Actually only the "salt-losing" category of CAH requires immediate attention. In rare conditions, gonads are prone to development of malignant tumors and may be removed prophylactically. Diamond & Sigmundson, Management of Intersexuality, supra note __, at 1047.
210 KESSLER, supra note __, at 21-24; Dreger, supra note __, at 27 ("In an effort to forestall or end any confusion about the child's sexual identity, clinicians try to see to it that an intersexual's sex/gender is permanently decided by specialist doctors within forty-eight hours of birth.").
211 MONEY, SEX ERRORS, 2nd ed., supra note __, at 65-66; KESSLER, supra note __, at 17 (quoting a urologist, "'One of the worst things is to allow them [the parents] to go ahead and give a name and tell everyone, and it turns out the child has to be raised in the opposite sex.'") (alteration in original).
212 See Dreger, supra note __, at 30 (stating the clinicians view intersex states as a "social emergency"); Diamond, Management of Intersexuality, supra note __, at 1047 (cosmetic clitoral and sex reassignment surgery should be postponed until "the patient is able to give truly informed consent"); Wilson & Reiner, supra note __, at 368.
One might argue, as has psychologist Meyer-Bahlburg that the adult actions and beliefs are predicated on what happens starting from infancy and therefore neonatal surgery is beneficial and not "merely" cosmetic since it will facilitate adjustment to the assigned gender. H.F.L. Meyer-Bahlburg, Gender Assignment in Intersexuality. 10 J. PSYCH. & HUMAN SEXUALITY, 1, __ (1998). However, no controlled study supports this thesis. The premise is quite dubious: parents must consent to emergency surgery on their infant's genitalia to prevent psychosocial harm at a later date.
213 See Timing of Elective Surgery, supra note __, at 590 (expressing concern that these congenital defects "may influence the mother's attitude toward child" and noting disadvantage of "prolonging the child's 'defective' status and crystallizing any disruption in family relationships that the child's condition may have produced"); Cowley, supra note __, at 65 (reporting view that physicians view "creating a normal appearance" as urgent). Instead of "normalizing" the sex organs, Diamond urges clinicians to counsel parents "that appearances during childhood, while not typical of other children, may be of less importance than functionality and postpubertal erotic sensitivity." Diamond & Sigmundson, Management of Intersexuality, supra note __, at 1047.
214 See MONEY, SEX ERRORS, 2nd ed., supra note __, at 82 (cautioning that parents of children with birth defects of sex organs "may despise, criticize, and avoid the pathology in their child who, in turn, feels despised, criticized and avoided as a person."); see also American Academy of Pediatrics, Timing of Elective Surgery, supra note __, at 590.
215 Reiner & Wilson, supra note __, at 363 (citing Heino F.L. Meyer-Bahlburg, Gender Assignment in Intersexuality, 10 J. PSYCH. & HUMAN SEXUALITY 1-21 (1998)).
216 See Diamond & Sigmundson, Management of Intersexuality, supra note __, at 1048.
217 Dreger, supra note __, at 32-33; KESSLER, supra note __, at 128-32. Moreover, the haste and secrecy produces its own shame and stigma. See Robert A. Couch, Betwixt and Between: The Past and Future of Intersexuality, 9 J. CLIN. ETHICS 372, 375 (1998) (noting that discomfort with intersexuality is culturally constructed); Preves, supra note __, at 415 (noting that surgery compounds shame rather than erasing it, and that parents might have been taught to deal with their different child rather than misguided attempts to "normalize" them through radical surgery); Wilson & Reiner, supra note __, at 364 (commenting that silence produces "significant feelings of shame"). There is increasing recognition that gender exists along a continuum, much as medicine and society desire a binary gender construct. See KESSLER, supra note __, at 132; Terry S. Kogan, Transsexuals and Critical Gender Theory: The Possibility of a Restroom Labeled "Other," 48 HASTINGS L.J. 1233, 1238 (1997). See also Brynn Craffey, 1997. Showering "Sans Penis". CHRYSALIS: THE JOURNAL OF TRANSGRESSIVE GENDER IDENTITIES, 2:55-56.
218 Diamond & Sigmundson, supra note __, at 1047; cf. KESSLER, supra note __, at Cowley, supra note __, at 66 (reporting on recommendations of Intersex Society of North America and biologist Anne Fausto-Sterling).
219 Diamond and Sigmundson's views are supported by ISNA, an organization of and for adult intersexuals. ISNA, supra note __. See Chase, supra note __, at 385.
220 Diamond & Sigmundson, Management of Intersexuality, supra note __, at 1047.
221 See KESSLER, supra note _, at 74-76. In regard to the effect on parents, Money et al. have written: "More than one-half of the parents (8/14) underwent only a short-lived, minor degree of crisis precipitated by having a micropenis baby [that that they were told would need to be reassigned as a girl]. None had an extreme degree of crisis." JOHN MONEY, TOM MAZUR, CHARLES ABRAMS, AND BERNARD F. NORMAN. 1981. Micropenis, Family Mental Health, And Neonatal Management: A Report On 14 Patients Reared As Girls. JOURNAL OF PREVENTIVE PSYCHIATRY, 1:17-27.
222 See Estate of C.W., 640 A.2d 427, 428 (Pa. 1994) (quoting Matter of Mildred J. Terwilliger, 450 A.2d 1376, 1382 (Pa. 1982)) ("[I]n making the decision of whether to authorize sterilization [of incompetent adult], a court should consider only the best interest of the incompetent person, not the interests or convenience of the individual's parents, the guardian or of society."); Wentzel v. Montgomery Gen. Hosp., Inc., 447 A.2d 1244 (Md. 1982) ("in considering the best interests of an incompetent minor, the welfare of society or the convenience or peace of mind of the ward's parents or guardian plays no part"); Mack v. Mack, 618 A.2d 744, 759 (Md. App. 1993).
223 Wilson & Reiner, supra note __, at 367.
224 Dreger, supra note __, at 30.
225 Bopp & Coleson, supra note __, at 144 (discussing studies demonstrating tendency of physicians to withhold information or not to admit the "limitations of their professional knowledge and ability").
226 Id. at 141-42.
227 Althaea Yronwode, 1999. Wisdom of Surgery on infants. TRANSGENDER TAPESTRY, 1999:18-21, 32. at 21.
228 MONEY, SEX ERRORS, 1st ed. at 62-63.; 2nd ed., supra note __, at 67.
229 Id. A physician candidly recalled to a reporter how he and his colleagues counseled parents of intersex children:
[A] pediatric endocrinologist at Children's Memorial Hospital in Chicago, would draw a pair of X's. This, he would say, was what a normal female's sex chromosomes looked like: XX.
Then, with the heel of his hand, he would erase the leg of one X. That, he would say was what happened to one of their daughter's X chromosomes. It was incomplete, unfinished. This was shy her sexual organs hadn't developed the way they should, why her breasts would not grow, why she couldn't ever have children.
What he din not say is that the incomplete X was not an X chromosome at all. It was a Y chromosome, the genetic marker for a male.
The child they were talking about was not a girl, at least not so far as her genes were concerned. She was a boy.
Kiernan, supra note __, at 1 (interviewing Jorge Daaboul).
230 See KESSLER, supra note __, at 21-24 (describing information provided to parents during diagnosis and noting deceptive and incomplete information imparted); Dreger, supra note __, at 31 (recounting anecdotal reports of parents and adult patients being misinformed and deceived about the nature of the condition and the treatment); anecdotal cases are also discussed in Colapinto, supra note __, at 95; Cowley, supra note __, at 64, 66.
231 Not infrequently the concept of "more time in gestation" having been needed leads to feelings of maternal guilt; e.g. "If only I had taken more time. . . "
232 KESSLER, supra note __, at 23.
233 Intersex is not merely a condition of the genitals, but of a sexually dimorphic brain. See William G. Reiner, Case study: sex reassignment in a teenage girl, 35 J. AM. ACAD. CHILD & ADOLESCENT PSYCH. 799 (1996) (noting the complexity of intersex conditions and uncertainty as to causes). See also Milton Diamond, 1976. Human sexual development: biological foundation for social development. In F. A. Beach (ed.), HUMAN SEXUALITY IN FOUR PERSPECTIVES, pp. 22 - 61. The John Hopkins Press. at 38-39.
234 In the context of involuntary sterilizations generally, one court commented, "An individual's right to procreate is fundamental.... Sterilization involves a surgical invasion of bodily integrity. It destroys 'an important part of a person's social and biological identity,' ... can be traumatic for the individual, and can have 'long-lasting detrimental emotional effects.'" In re Romero, 790 P.2d 819. 821 (Colo. 1990) (en banc) (citations omitted) (upholding right of incapacitated mother of two to refuse sterilization where she expressed desire to have additional children).
In ARATO V. AVEDON, 5 CAL. 4TH 1172, 23 CAL. RPTR. 2D 131, 858 P.2D 598 (1993) the Court concluded: "a physician is under a legal duty to disclose to the patient all material information -- that is, information which would be regarded as significant by a reasonable person in the patient's position when deciding to accept or reject a recommended medical procedure-- needed to make an informed decision regarding a proposed treatment."
235 A recent prize-winning essay student essay advocates deception in the case of androgen insensitivity syndrome (AIS) discovered at adolescence. AIS patients are genetic males who, for lack of receptors necessary to masculinize, will grow up looking like females but possessing an underdeveloped vagina and lacking ovaries. The condition is sometimes overlooked until adolescence when it is discovered because the child fails to menstruate. The medical student argues that both the parents and the adolescent child should be shielded from knowledge of AIS. Since, "[t]he only services the physician can provide are surgical reconstruction of the vagina and counseling on adoption," she suggests that if the "patient is completely comfortable with her female sexuality" then "physicians who treat AIS patients are justified in not disclosing the information that the patient is genetically male." Anita Natarajan, Medical Ethics and Truth-Telling in the Case of Androgen Insensitivity Syndrome, 154 CANADIAN MED. ASS'N J. 568-69 (1996).
236 See Colapinto, supra note __, at 95. J/J resisted hormone treatment and four years of unyielding pressure and deception by both Dr. Money and her local treatment team to undergo vaginal reconstruction. Id. at 70-71. See also Sherri A. Groveman, The Hanukkah Bush: Ethical Implications in the Clinical Management of Intersex, 9 J. CLIN. ETHICS 356, 357 (1998) (discussing life with AIS, recounting surgery and ongoing medical treatments, and stating that doctors "implored my parents never to tell me the truth" and describing finally discovering diagnosis on her own at age 20 through medical detective work).
237 William Reiner, an Assistant Professor of Child and Adolescent Psychology at Johns Hopkins University, describes the rationale for secrecy:
At the time of initial gender assignment, to protect the child's psychosocial development from potentially hurtful comments, physicians have generally counseled families not to discuss any of this with other family members or friends. Further, based on the theory that any doubt may undermine development of gender identity concordant with the assigned sex of rearing, they also advise the family not to discuss the child's condition with the child.
Wilson & Reiner, supra note __, at 363. Wilson and Reiner explain that as medical records become more easily obtainable, secrecy is increasingly unrealistic, out of step with current views of patient rights, and patient autonomy. Id. at 364. See also Diamond, Management of Ambiguous Genitalia, supra note __, at __ ("Parents and clinicians have often concealed aspects of surgery and treatment from the child and excluded maturing children from medical management decisions.... Adults who have had these procedures in childhood are now presenting at clinics quite ignorant of their history."); Dreger, supra note __, at 27, 30-32 ("Clinicians treating intersexuality worry that any confusion about the sexual identity of the child on the part of relatives will be conveyed to the child and result in enormous problems, including potential "dysphoric" states in adolescence and adulthood."); Groveman, supra note __, at 357 (commenting on receiving AIS diagnosis and infant surgery, "the sole instruction my parents received ... was one of "damage control," calculated to confirm a solid image that I was their daughter in the same breath that doctors enjoined them that they should not disclose my true diagnosis to anyone, least of all me").
Money suggests that displayed ambivalence to the gender assigned is fatal to success. See MONEY, SEX ERRORS, supra note __, at 66 ("If a change must be made [in the announcement of sex] then it should be made only once and forever, with no delay or vacillation."); MONEY, SEX POLICE, supra note __, at 319 (raising the effect "about hearing of one's infantile medical history from the children of adult members of the community grapevine" as a possible explanation for the failure of J/J's case). But Money's idea of a success if for the sex-reassigned person to accept without question the imposed gender switch. This is independent of whether the individual him or herself would make that gender decision given all the facts.
Elsewhere, however, Money has written that "The withholding of information can be extremely traumatic, as the patient will soon realize that things are being withheld and will resort to inferential guesswork. . . . When they grew up, several of these [hermaphroditic] patients confronted me with the folly of this policy, for they had known all along that they had been dealt with insincerely. In the majority of instances, they also knew exactly whnformation was being withheld.. . ." JOHN MONEY, 1983. Birth defect of the sex organs: telling the parents and the patient. BRITISH JOURNAL OF SEXUAL MEDICINE, 1983:14.
238 In a prize winning essay, Natarajan urges physicians keep secret the male status of women with androgen insensitivity. She reasons that the knowledge will be too psychologically damaging for them and so justifies the ethics of deception. Natarajan, supra note __, at 570.
AIS women themselves, on the other hand, express a desire to know the truth of their condition.. See: B. Diane Kemp,.1996. Letter to the Editor (re: Sex, Lies and Androgen Insensitivity Syndrome). 154 CANADIAN MEDICAL ASS'N J. 1829-33.; Sherri A. Groveman, Letter to the Editor. 154 CANADIAN MEDICAL ASS'N J. 1829, 1832 (1996). Anonymous. 1996. Letter to editor. 154 CANADIAN MEDICAL ASS'N J. 154:1832. This is supported by the present research of Diamond among 35 women with AIS.
239 See Dreger, supra note __, at 28, 31. Moreover, when patients are not given complete information, they sometimes do not appreciate the continued sex-related risks of their former sex that plague them. Id. at 31-32.
240 Cowley, supra note __, at 66 (quoting Dr. Antonne Koury, chief of pediatric urology at Toronto's Hospital for Sick Children).
241 Brendan P. Minogue & Robert Taraszewski, Commentary, The Whole Truth and Nothing But the Truth? 18 HASTINGS CENTER REPORT 34 (Oct./Nov. 1988) and Sherman Elias & George Annas. Commentary, The Whole Truth and Nothing But the Truth, 18 HASTINGS CENTER REPORT 35-36 (Oct./Nov. 1988).
242 Current sensitivity to the effect on the patient of labeling the condition "testicular-feminization" the condition has been relabeled "androgen insensitivity syndrome" (AIS). The person's body tissues can not respond to androgens which are needed for typical virilization.
243 Minogue & Taraszewski, supra note __, at 34.
244 Minogue & Taraszewski, supra note __, at 34.
245 Id. at 35. The authors suggest the information is not "relevant" since nothing can be done and all "immediate problems can be addressed without revealing the information about her genetic abnormality." Id. at 34.
A contrary position that full disclosure rather than deception to both parents and child is also presented. See Elias & Annas, supra note __.
246 Minogue & Taraszewski, supra note __, at 35.
247 A physician bears the burden of producing evidence that the therapeutic privilege negates the duty to disclose, and only then, "the patient has the ultimate burden of proving the nonexistence of the exception." Bernard v. Char, 903 P.2d 676, __ (Haw. App. 1995), cert. granted and clarified on other issues, 903 P.2d 667 (1995).
248 464 F.2d at 789 (footnotes omitted). See also McNichols, supra note __, at 728 (applauding narrow scope of therapeutic privilege crafted by Canterbury).
249 The J/J case, communications from former patients, and ISNA discussions share a striking common theme that information, even in adulthood, was desperately wanted but difficult to obtain. See supra notes __, __. These stories suggest a deviation from the so-called common view:
[A] physician has a fiduciary duty to inform a patient of abnormalities in his or her body. The basis of this duty is that the patient has a right to know the material facts concerning the condition of his or her body, and any risks presented by that condition, so that an informed choice may be made regarding the course which the patient's medical care will take. The patient's right to know is not confined to the choice of treatment once a disease is present and has been conclusively diagnosed. Important decisions must frequently be made in many non-treatment situations in which medical care is given, including procedures leading to diagnosis.... These decisions must all be taken with the full knowledge and participation of the patient.... The existence of an abnormal condition in one's body, the presence of a high risk of disease, ... are all facts which a patient must know in order to make an informed decision on the course which future medical care will take.
Gates v. Jensen, 595 P.2d 919, 922 (Wash. 1979) (en banc).
250 See Sharon E. Preves, For the Sake of the Children: Destigmatizing Intersexuality, 9 J. CLIN. ETHICS 411, 414 (1998).
251 It has been reported that Cheryl Chase, Director of the Intersex Society of North America, "At the age of 35 . . . had a nervous breakdown. Although she had been able [with difficulty] to access her medical records in her early 20s, . . . the years of secrecy, unexplained surgeries, and sexual dysfunction caused by removal of her clitoris had taken a huge toll on her. 'Until I was 35, I was ashamed and terrified that people would find out that I was different than a woman. Like many, supposedly happy and successful patients, I was silenced.'" Yronwode, WISDOM OF SURGERY ON INFANTS note ____ at 19.
252 See Kipnis & Diamond, 1998 at 407; Diamond, 1999 at 1026.
253 See Diamond & Sigmundson, supra note ____ at 1048.
254 See Kipnis & Diamond, 1998 at 407; Diamond, 1999 at 1026.
255 See FURROW, supra note __, at § 6-5 at 386-87 (commenting, "courts seem willing to tolerate clinical innovation so long as a patient is properly informed as to the innovative and untested nature of the procedure").
256 Diamond & Sigmundson, supra note __, at 298.
257 Kipnis & Diamond, Pediatric Ethics, supra note __, at 406 ("it is not possible for a patient's parents to give informed consent to these procedures, precisely because the medical profession has not systematically assessed what happens to the adults these infant patients become.").
258 See Dreger, supra note __, at 32. Diamond, Ambiguous and Traumatized, supra note __, at __.
259 MONEY, SEX ERRORS, 2nd ed., supra note --, at 67 (emphasis added).
260 Id. at 54 (emphasis added).
261 Indeed, the American Academy of Pediatrics, in its 1996 recommendations on timing male genital surgery, stated "a person's sexual body image is largely a function of socialization" referencing only the decade-old and older work of John Money. Timing of Elective Surgery, supra note __, at 590. Yet, to date, there has not been a single report of a sex reassigned nonintersexed male successfully living as an androphilic woman. (Diamond, supra note ______, at 1023.)
262 There is no doubt that doctors are choosing treatments based on social or personal value judgments, consider the following quote concerning clitoral surgery that favors appearance:
The clitoris is not essential for adequate sexual function and sexual gratification ... but its preservation would seem to be desirable if achieved while maintaining satisfactory appearance and function.... Yet the clitoris has a relation to erotic stimulation and to sexual gratification and its presence is desirable, even in patients with intersexed anomalies if that presence doesn't interfere with cosmetic, psychological, social and sexual adjustment.
KESSLER, supra note __, at 37 (quoting Judson Randolph & Wellington Hung, Reduction Clitoroplasty in Females with Hypertrophied Clitoris, 5 J. PEDIATRIC SURGERY 224, 230 (1970)).
263 Wilson and Reiner comment:
[T]he right of the individual to determine what happens to his or her body has been increasingly asserted. Patients and families are demanding a voice in the issue of sex assignments and therapies. After all, the child's sex-of-rearing and gender identity are profoundly important to that child's lifelong development and adjustment. Although parents may give consent for surgery, there is increasing movement toward obtaining a child's assent to procedures, particularly those which, like most genital "reconstructive" procedures, are elective from a medical viewpoint. This means delaying surgery until we can take into account the affected individual's determination of his or her own gender.
Wilson & Reiner, supra note __, at 364. See also Schober, supra note __, at 394 ("For the best long-term outcomes, we need to consider that surgical treatment methods do not 'cure' intersexuality, and that a procedure such as vaginoplasty should address a consenting and requesting patient's needs and desires, not parental and societal comfort.").
264 Laurence McCullough, "The Ethics of Gender Reassignment," Presentation at conference 1999 Pediatric Gender Reassignment: A Critical Reappraisal Wyndham-Anatole Hotel, Dallas, Texas, April 30, 1999. See also Dena S. Davis, Genetic Dilemmas and the Child's Right to an Open Future, 28 RUTGERS L.J. 549, 575-81 (1997) (noting and approving of trend against conducting genetic tests to predict late-onset diseases and suggesting that parents who opt for testing "preclude the child's right and opportunity to make that decision for himself in adulthood").
265 See infra notes __.
266 KESSLER, supra note __, at 74; Kipnis & Diamond, Pediatric Ethics, supra note __, at 405-406; Diamond & Sigmundson, Management of Intersexuality, supra note __, at 1047; Reiner, Sex Reassignment, supra note __, at 1044. Diamond, J. Urology at 1025-1026. Kipnis and Diamond and Diamond also recommend the moratorium remain in effect until the positive value of the surgery is documented with adequate follow-up study. See Meyer-Bahlburg, supra note __, at 15 and Glassberg, supra note ____, at 152-153 (both defending cosmetic surgery). While suggesting that surgery continue on ambiguous genitalia, Glassberg, supra note ____ at 1309, is also open to change: ". . .we must learn from patients who resent how they were treated and those who are satisfied. If data become available to prove that a given approach should be changed, we should do this promptly. Today with valid, unbiased followup data, and genetic, pharmacological and surgical tools, we should be able to produce a satisfying outcome for nearly all children born with this potentially devastating problem."
267 Preves, supra note __.
268 See Diamond & Sigmundson, Sex Reassignment, supra note __, at 303; Dreger, supra note __, at 30, 33-34.
269 Preves, supra note __, at 415 (reporting on fear of cancer as a result of incomplete medical history); Groveman, supra note __, at 357-58.
270 See ISNA, Frequently Asked Questions, Hormone Replacement and Osteoporosis, available at (warning that persons who have had their gonads removed in childhood are at exceptionally high risk of osteoporosis), last visited July 15, 1999.
271 Morgan Holmes, Is growing up in silence better than growing up different? 2 CHRYSALIS: THE JOURNAL OF TRANSGRESSIVE GENDER IDENTITIES 7-9 (1997/1998) (describing mental disturbance and suicidal ideation); Cowley, supra note __, at 66 (discussing case of Cheryl Chase, ""not only was [she] denied information as a child but was lied to by doctors when she later tried to obtain her medical records"); Colapinto, supra note __, at 95 (recounting incidents of secrecy and resulting psychological pain and suffering).
272 Kenneth Kipnis, and Milton Diamond. 1998. Pediatric Ethics and the Surgical Assignment of Sex. THE JOURNAL OF CLINICAL ETHICS, 9: at 406-407. Milton Diamond, 1999. Pediatric Management of Ambiguous and Traumatized Genitalia. JOURNAL OF UROLOGY, 162: at 1026.
273 See, e.g., Blaz v. Galen Hospital Illinois, Inc., 982 F. Supp. 556 (N.D. Ill. 1997) (noting that where there is a continuing duty the cause of action does not accrue until the defendant "had sufficient facts to understand that its treatment had placed the plaintiff at risk"); Mink v. University of Chicago, 460 F. Supp. 713, 720 (N.D. Ill. 1978) (citing Canterbury v. Spence, 464 F.2d 772 (D.C. App. 1972)) (recognizing ongoing duties to notify women of cancer risks related to treatment with DES discovered after treatment); Schwartz v. United States, 230 F. Supp. 536 (E.D. Pa. 1964) (holding that veteran's hospital has duty to inform patient of newly discovered risks associated with prior treatment); Tresemer v. Barke, 150 Cal. Rptr. 384 (Cal. App. 1978) (holding that doctor had continuing duty to warn of later discovered risks associated with Dalkon Shield and statute of limitations was inapplicable); Reyes v. Anka Research Ltd., 443 N.Y.S.2d 595, 597 (N.Y. Sup. Ct. 1981) (noting that cause of action for failing to notify patient of recall of IUD "continued up to the time of reasonable discovery"). But see Schendt v. Dewey, 520 N.W.2d 541 (Neb. 1994) (holding that there is no duty to warn of cancer risks from radiation following termination of the physician-patient relationship). See generally Lori B. Andrews, Torts and the Double Helix: Malpractice Liability for Failure to Warn of Genetic Risks, 29 HOUS. L. REV. 149, 169 (1992) (discussing on-going duties to warn where genetic testing later reveals other as-yet-unknown links to diseases and carrier states); Andrea G. Nadel, Annotation, Duty of Medical Practitioner to Warn Patient of Subsequently Discovered Danger From Treatment Previously Given, 12 A.L.R.4th 41 (1981 & 1997 supp.).
274 Name withheld. Tape recorded interview on file with author.
275 He explained, for example, that his best childhood friend was a boy. As he matured, he had few friends, but generally he preferred male friendship. He could act like a girl, "but it didn't feel right." He played with Ninja Turtles rather than Barbie and preferred to act like a boy.
276 From his description and subsequent interview, he probably had micropenis and possibly a hypospadias. He was XY 46, [normal for a male] but he didn't discover that (nor did his parents) until he was an adult undergoing sex change back to live as a typical male.
277 He now takes injections of testosterone but his external genitalia, even now after reconstruction, remains "deficient." Unfortunately, his testes were removed at the same time as his penis was amputated. Earlier estrogen treatment forced the development of breasts but three years previously he had a mastectomy.
278 For a long time I felt, "how could you do this to me? ... If they had known I was born as a boy, they wouldn't have raised me as a girl."
He also explained, "When I was ten, I asked my mother if God makes mistakes." "My mother was left in the dark as much as I was [about my condition]." The doctors told his parents his testes were cancerous (although they were not). His parents were not clear at the time that he was born a boy, although genetic tests at the time revealed he had a normal 46 XY karyotype and he had normal testes.
279 In addition to hygienic problems with urination there are the scars from surgery and the need for life-long medical treatment. Most crucially there is also the hesitation in social interactions with the knowledge he will not function as a typical male nor be fertile. He has as yet to engage in any erotic social activity with a partner.
280 He explained, "the conclusion was that the doctors at the time of my birth did the best they knew how to do."
281 KESSLER, supra note __, at 75-76; Kipnis & Diamond, supra note __, at 405-407; Diamond & Sigmundson, Management, supra note __, at 1047; Dreger, supra note __, at 34; Catlin, supra note __, at 65.
Unfortunately, Dreger notes that ethicists have historically not been included in this debate. See Dreger, supra note __, at 26 (noting the scant attention to the ethical issues until now). Times are changing, as evidenced by the devotion of an entire issue on this topic in the Journal of Clinical Ethics in 1998.
Reiner, Sex Assignment, supra note __ (reminding readers "the brain is the most important sex organ").
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