This is a prepublication version prepared for the Internet. Publication occurred in the Michigan Journal of Gender & Law, Volume 7 (1): 1-63, 2000.

This version may be different than the published version.

An Emerging Ethical and Medical Dilemma: Should Physicians Perform Sex Assignment on Infants with Ambiguous Genitalia?

by

Hazel Glenn Beh and Milton Diamond ^*

I. Introduction:

This article discusses the development of a surgical approach to treating intersex^[1] 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 genitalia^[2] or who suffer traumatic genital injury often has been recommended as standard procedure.^[3] Surgical advances in this century have made it possible for physicians to choose a gender^[4] 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.^[5] 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.^[6] 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 ^[7] 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.^[8] 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. ^[9] 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.^[10] 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,^[11] was reported in the pediatric literature.^[12]

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.^[13] 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.^[14] This case is now known in the psychological and medical literature as the John/Joan case.^[15]

The parents were counseled to raise the child as a girl and to provide the child only limited information:

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.^[17]

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.^[18] 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.^[19]

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.”^[20] Money did not report on J/J’s refusal to cooperate in his counseling^[21] 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.”^[22]

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.^[23] 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.^[24] 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.”^[25] 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.^[26] Joan thereafter refused to return to The Johns Hopkins.^[27]

Although the case had been widely reported and cited in the medical literature,^[28] the rejection of the assigned gender that the child exhibited did not appear in the literature^[29] when it might have had an impact on the developing standard of care.^[30] 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.^[31] Skepticism regarding its theoretical scientific base^[32] prompted one critic’s prolonged search to find the “adult” J/J to see how she had actually developed and matured.^[33] 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.^[34]

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.^[35]

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.”^[36] She was constantly teased at school because of her girl clothes and “boy looks and contemplated suicide.”^[37] “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.”^[38] 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.^[39] Indeed, they were advised not to.^[40]

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.^[41]

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.’”^[42]

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.^[43] Following the transition, John’s life dramatically changed.

John later married a woman and adopted her three children. He has bonded with them as a father.^[45] 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.”^[46]

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.^[47]

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.^[48] 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.^[49] 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.” ^[50]

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.’”^[51] Because innovative therapies are not sufficiently tested, “the potential benefits and risks of innovative therapies are less well known or predictable.”^[52] 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.”^[53] 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.”^[54]

Unfortunately, scientific assessments of innovative surgical procedures is not the norm within the practice of medicine.^[55] “Most innovations have become accepted as “standard procedures” without ever having been subjected to the rigorous testing for efficacy of a [randomized controlled trial].”^[56] “[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.’”^[57] Commentators note that physicians often display a premature eagerness to adopt innovative therapy before adequate studies are conducted.^[58] In actuality, fewer than ten to twenty percent of medical practices have been subjected to randomized clinical trials.^[59] 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.^[60] Thereafter, clinicians often become entrenched in following particularly therapies and resistant to adopting superior therapies.^[61] They are also reluctant to publish reports of unsuccessful procedures or treatments.^[62] 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.^[63]

B. The Surgical Standard in Treatment of Ambiguous Genitalia

Since innovative therapy often becomes standard therapy through informal acceptance and use,^[64] 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.^[65] 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.^[66] 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.^[67] 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.^[68]

The initial reports of the J/J case,^[69] particularly as reported in the 1972 book Man & Woman, Boy & Girl,^[70] and its purported success spread rapidly and was frequently recounted in the professional literature.^[71] 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.^[72]

Cases of infants born with ambiguous genitalia are not common but neither are they rare.^[73] 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.^[74]

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.^[75] 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.^[76] This view came to dominate pediatric literature.^[77] 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.^[78]

Surgical intervention became the standard of practice to the extent that, as recently as 1996, the American Academy of Pediatrics published these guidelines:

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.^[80]

Not all neonatal surgical interventions for infants born with ambiguous genitalia involve sex reassignment.^[81] The surgical alteration of any female born with a clitoris larger than one centimeter is also recommended.^[82] 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.^[83] The efficacy of even these more modest surgical interventions to normalize genitalia have also lacked validation.^[84]

Unfortunately, like the practice of female genital alteration (“mutilation”) for cultural reasons,^[85] 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.^[86] Interestingly, the effect of the 1996 Criminalization of Female Genital Mutilation Act,^[87] 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,”^[88] 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”^[89] unless it is “necessary to the health of the person on whom it is performed.”^[90] 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.^[91]

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.^[92] To this day, the recommended surgical management practices for ambiguous genitalia that have been promoted by the American Academy of Pediatrics^[93], remain invalidated by long-term study.^[94] The appropriateness of early surgical intervention was never well supported by scientific investigation, and, in fact, some of the recent research refutes its efficacy.^[95] 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.^[96]

Since the latest reports on J/J’s case were revealed in 1997, the medical community has itself divided on this issue.^[97] 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.^[98]

Second, critics point to evidence that persons born with genitalia that fall outside our normal expectations can achieve a satisfying psychosexual adjustment without surgical intervention^[99] and argue that the imperative to create normal genitalia is of overrated significance.^[100] 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.^[101]

Third, critics point to transsexuality,^[102] 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.^[103] 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.”^[104]

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.^[105] 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.^[106] They challenge the efficacy of surgery, pointing to their own cases as evidence.^[107]

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 size^[108] and continue to perform surgical procedures to alter genitalia which forecloses later choices for patients. So great is the fear of psychosexual maladjustment,^[109] proponents of surgery identify phallus size as a key determinant of whether a genetic male should be surgically reassigned,^[110] even over male reproductive capacity.^[111] 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.”^[112]

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.^[113] In general negligence law, a jury’s view of “reasonable prudence” can override a deficient standard of care in a particular profession or industry.^[114] As Judge Learned Hand explained,

While “[w]hat usually is done may be evidence of what ought to be done,”^[116] Judge Hand reminds us that no profession is so collectively infallible that custom alone should establish reasonable prudence in every instance.^[117]

But in medicine, the prevailing view has held that “[t]he law generally permits the medical profession to establish its own standard of care.”^[118] A physician must exercise “the degree of knowledge, skill, and care used by other physicians practicing in the same specialty.”^[119] “[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.”^[120] Physicians are not guarantors of positive outcomes, absent their own express promises;^[121] there is “no presumption of malpractice from the mere fact of injury.”^[122]

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.^[123] 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.^[124]

There are a few notable cases that reject this extraordinary deference to anunassailable medical-community-based standard, most notably, Helling v. Carey.^[125] In Helling, a 32 year old plaintiff suffered vision loss as a result of glaucoma.^[126] 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.^[127] However, glaucoma testing was also inexpensive, simple, and posed no appreciable harm to patients.^[128] 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.^[129] 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.”^[130] 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.^[131]

Helling is generally regarded as a minority view^[132] and has been extensively criticized by legal scholars.^[133] 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.”^[134]

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.^[135] 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.”^[136] 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,^[137] few cases actually find liability based on the failure to keep pace with changing professional standards.^[138] 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.”^[139] 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.^[140] While there are exceptional cases,^[141] 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.^[142]

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.^[144] 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,^[145] 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[.]”^[146] and “fairly common to remove the enlarged, masculine-looking clitoris” of female hermaphrodites.^[147] 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:

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,”[149] 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.”^[150] 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.^[151] 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.^[152]

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. Doctrine of Informed Consent

The informed consent doctrine^[153] preserves a patient’s right to make medical decisions on his or her own behalf.^[154] 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.’”^[155] Two key interests are particularly at stake: bodily integrity and self determination.^[156] “The law of informed consent is predicated on notions of patient sovereignty and serves to safeguard the patient’s right of choice.”^[157]

Informed consent requires physicians to disclose relevant information concerning a proposed treatment to patients. ^[158] Generally, informed consent includes an obligation to provide information concerning alternatives to the proposed treatment, including “material risks incident to abstention from treatment.”^[159]

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,^[160] 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.”^[161]

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.^[162] 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.”^[163] 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.^[164] Thus, in jurisdictions employing a patient-oriented standard of informed consent, patient autonomy rights prevail over medical-community standards.^[165]

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.”^[166]

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.”^[167] 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.^[168] 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.”^[169] In practice, few cases actually rely on the privilege as an excuse for nondisclosure.^[170] 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.^[171]

B. Consent and Parental Decision Making on Behalf of Infants

While children and incompetents possess bodily integrity and self-determination rights in theory,^[172] 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.^[173] 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.^[174]

While the standard by which courts judge surrogate decision-making on behalf of incompetents is a “substituted judgment standard,”^[175] for infants the standard is better viewed as a “best interest standard” since an infant has no prior judgment from which decisionmakers might draw.^[176] 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,”^[177] is now premised on the belief that “the natural bonds of affection” motivate parents to act in the child’s best interest.^[178] The law presumes that “family members are generally most concerned with the welfare of a patient.”^[179]

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. ^[180] Usually, conflicts between physicians and parents draw the state into medical treatment controversies.^[181] 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.^[182]

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.^[183] 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,^[184] especially in childhood.^[185] “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.”^[186] 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.”^[187]

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.^[188] 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.^[189] 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.^[190]

In surrogate decision making other than compulsory sterilization, judicial involvement is not the norm unless parents and physicians are not in accord.^[191] However, it remains useful to consider how courts evaluate cases in which parents and physicians disagree. Parental decisions to deny medical treatment for religious^[192] or other reasons^[193] 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.^[194] 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.^[195]

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.^[196] Under a trust-model of decision making that seeks to preserve a child’s “right to an open future,”^[197] parents should attempt to safeguard a child’s right of autonomy.^[198] and be “constrain[ed] from consenting on the child’s behalf to that which may impair the enjoyment of autonomy at maturity.”^[199]

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.”^[200] When the burden and risk are great, treatment may carry too high a price to be justified.^[201] Some critics liken parental consent togenital “mutilation” which might permanently impair adult function as a form of child abuse that should be prohibited.^[202]

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.”^[203] “Demonstratively effective” treatments should be weighted of more value than “experimental or investigational” treatments.^[204] 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.^[205] 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.^[206] 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.^[207] Many medical texts classify this decision making process as a medical emergency.^[208] Clinicians develop a treatment plan to facilitate conforming the child to that sex within days of birth.^[209] 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.^[210]

Despite the impression of “urgency” that clinicians create, surgical treatment of the genitals is essentially cosmetic and not medically urgent.^[211] Instead, the message of urgency is based upon social and psychological considerations, including stigmatization and the nurture assumption.^[212] Compassion for the parents and concern that they would not bond^[213] 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.”^[214]

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.^[215] 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.^[216] 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.^[217] 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.^[218] 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.”^[219]

Finally, recommending prompt surgery based on the fear of parental rejection and failure to bond is premised more on medical opinion than fact.^[220] 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.^[221] 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.”^[222] 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.”^[223] 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.^[224] 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 informed^[225]

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 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.”^[227] 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.”^[228] 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.^{[229] [230]} In 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.^[231]

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.^[232] 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.^[233]

3. Perpetuating Secrecy

Secrecy is probably the most unusual and harmful aspect of the medical treatment prescribed for intersex conditions.^[234] 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.^[235] 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.^[236]

The medical community’s zeal to raise intersexed babies or those sexually reassigned without ambiguity is necessarily deceptive,^[237] because, after all, despite the dogma, the child’s genitals were not rendered by surgery unequivocally typically male or female.^[238] 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.”^[239]

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.^[240] Upon discovery that the “girl has an XY genotype, a genetic abnormality called testicular feminization”^[241] 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.’”^[242] 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.^[243] 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.”^[244] Addressing two fundamental questions, the authors reason:

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.^[246] As the Canterbury court cautioned when fashioning this therapeutic privilege to withhold information from the patient,

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 adulthood^[248] 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.^[249]

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.^[250] 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.^[251] The solution is for complete honest and early disclosure of the situation with appropriate counseling and support.^[252]

4. Failing to Disclose The Uncertainty of the Long-term Outcome^[253]

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.^[254] However, because the J/J case, as originally presented, had become “a classic for the academic and medical community”^[255] clinicians probably projected more confidence in the procedure than it deserved.^[256] Clinicians asserted the potential for successful “normalization” because the literature suggested such, when, in fact, insufficient data existed to support their premises.^[257] Indeed, clinicians were advised as recently as 1994, to project confidence in the treatment recommendations when counseling parents:

As to treatment of micropenis in particular, Money counseled:

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.^[260]

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.^[261] 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.^[262]

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:

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.

IV. 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.^[264] 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.^[265]

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 strategies^[266] preserves a child’s right to self-determination.^[267]

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.^[268] For example, gonadectomy, exposes patients to a definite risk of osteoporosis and creates a need for life-long hormone replacement.^[269] Adult intersexed individuals report that their attempts to obtain a clear diagnosis and understanding of the treatment undergone as an infant are often frustrated.^[270] 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.^[271] 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.^[272]

V. 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.^[273] 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,^[274] 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.^[275] At the age of seventeen he decided that he could no longer live as a female and, like J/J, reclaimed his male identity.^[276]

Remarkably, although he once did, he now holds no anger toward his parents given what they were advised at the time;^[277] 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.^[278] 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.^[279] 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.^[280] 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.^[281]

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.

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.

Ambiguous genitalia are those that are not clearly identified as male or female. Usually detected at birth they are a frequent sign of intersex.

See infra notes ___.

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.

See infra notes __.

See infra notes __.

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.

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.

See infra notes ___.

See infra notes __.

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).

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).

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).

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.

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).

MONEY & EHRHARDT, MAN & WOMAN, supra note __, at 119.

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.

See Colapinto, supra note __, at 68.

See Colapinto, supra note __, at 55.

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.

See Colapinto, supra note __, at 68.

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.

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].

BBC Follow-up, supra note __, at 183.

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.

Diamond & Sigmundson, Sex Reassignment, supra note __; Colapinto, supra note __, at 71.

Diamond & Sigmundson, Sex Reassignment, supra note __, at 300.

See infra notes __.

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.

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.