It’s the first question new parents ask and the first question family and friends ask new parents: “Is it a boy or is it a girl?” What happens when an infant is born with ambiguous genitalia, when she or he cannot be readily classified as either sex? The ensuing panic can have long-lasting and often negative consequences for the child. Until recently, the medi- cal profession has reinforced a binary gender system, which categorizes all humans at birth as either male or female. This assumption about sex and gender involves the alignment of genitalia (or the physical outward appearance of males and females) with a socially constructed gender (masculine and feminine).

Precisely because intersex individuals defy extant gender and sex norms, the treatment of intersex infants and children affords the perfect opportunity to apply a person-centered approach to care. Medical professionals are the first line of treatment for congenital conditions, whether they are truly life threatening or if they only threaten our normative sexual categories. The treatment of any congenital condition has the potential to change the outcome of an individual’s entire life. An approach which values honesty, openness, and a careful consideration of options can lead to self-acceptance, while a rash surgical approach can lead to a life of secrecy and shame.

The Intersex Society of North American estimates that in approximately 1 in 1,500 U.S. births, an infant is born with atypical genitalia.1 Certain conditions, such as congenital adrenal hyperplasia or Klinefelter Syndrome, cause clitoromegaly or micropenis, ‘abnormalities’ which are most often the focus of bioethical literature. However, these numbers overlook those individuals whose chromosomal or hormonal conditions are subtler or not diagnosable until puberty.2 For the treat- ment of intersex infants, the medical focus is on disambiguating the genitalia. As the child grows older, hormone therapy can be used to ce- ment the assigned sex. This approach is steeped in societal beliefs about ‘correct’ genitalia and the medical implementation of these beliefs at the expense of the child’s rights.

Justifications for these procedures traditionally rest on the idea that intersexuality is a pathological condition. Sex/gender must be aligned immediately for fear that if the child remains intersex he or she will suffer future depression and even suicide. However, studies have shown no correlation between retaining ambiguous genitalia and psycho- logical distress on the part of the intersex individual;3 in fact, in the past twenty years intersex adults have stridently advocated against genital- normalization in infants.

Historical and current responses to intersexuality often diverge from person-centered care. Examining these responses will help illumi- nate an ethical approach to intersex infants that places their human right to self-determination at the forefront of care.

 

Historical precedent for treatment of intersex infants

The current treatment of intersex infants is rooted in the suppositions of John Money and Johns Hopkins University during the 1950s. The approach, now known as “optimal gender of rearing,” claimed that gender was pliable in early childhood, such that social upbringing could cement gender identity to a greater extent than biology.4

This social engineering of gender required aligning the child’s ‘abnormal’ genitalia with genitalia appropriate for the assigned gender. To this end, most chromosomally male children with ‘inadequate’ (less than 2.5 cm long) penises were reassigned to the female sex and had their penises reconstructed into an acceptably sized clitoris.5 “Feminizing geni- toplasty as opposed to masculinizing genitoplastyrequires less surgery to achieve an acceptable outcome and resultsin fewer urologic difficulties.”6 In simpler terms, it is far easier to construct a ‘functional’ vagina that it is to construct an adequate penis. According to this model, a functional vagina need only act as an insensitive, “receptive hole,” while the penis must be capable of achieving erection and ejaculation.7

Simultaneously, doctors advised the parents of the now ‘females’ to dress the children in pink and encourage traditionally female behavior and activities. This method instigates a culture of concealment that is an intrinsic part of this approach to intersexuality. However, most critics now consider the “John/Joan” case on which this model is built to be a complete fallacy. In 1965, a male identical twin baby (not intersexual) was undergoing a circumcision when a doctor accidentally burned off the infant’s penis. Subsequently, John Money and the Hopkins group recom- mended that the little boy be raised as a female, with surgery to construct female-appearing genitalia and a female psychosocial upbringing. The truth of his condition was concealed until the child’s teen years, at which point he resumed his male identity.8 While this individual was not born intersex, his nonconsensual sex change is very similar to the experiences of intersex people. It is clear from this case that altering genital tissue does not in fact change an individual’s gender or sex. Normalizing inter- ventions can only force a child to conform to social mores but cannot alter his or her identity. It is also impossible under most circumstances to reverse the effects of these surgeries. Until a child can advocate for his own sexual and gender identity, irreversible procedures are dangerously hit or miss.

 

A psychosocial emergency… for whom?

Western societies conform to the mutually exclusive male-female dichotomy and any deviation from these norms provokes severe anxiety. Consequently, the medical treatment of these intersexed children is intended to assuage any ambiguity. However, immediate gender-normalizing surgery is rarely a medical necessity. Instead, “doctors act quickly not because the infant is in any medical danger, but ‘to spare parents the trauma of seeing their child as intersexed each time they change the infant’s diaper.’”9 It is for the parents’ comfort and acceptance of the child that surgeries often occur in the first months after a child’s birth. Of course, parental counseling could serve the same purpose, but a quick fix is far more alluring. As a medical professional, buying into a strict sexual binary treats those who fall outside of recognizable gender categories as unwanted aberrations.

This is not to say that parents and the medical profession intend to harm the child. However, they often believe that normalization will allow the child to escape bullying and fit into his or her peer group. They fear that the child will suffer irreparable psychological damage because he or she feels or looks different from other children. However, this continued emphasis on a fixed gender-sex system does not spare children these feelings of embarrassment or shame. Instead, as Betsey Driver, born with congenital adrenal hyperplasia, testified, “all of the surgeries and attention taught her that her body was unacceptable and something of which to be ashamed.”10 The surgeries, which often must be repeated as the child grows, were “intended to assuage feelings of difference [but] only served to highlight their stigma.”11

Treating intersex children as grotesque seeds a lifetime of self- hatred and shame. Physicians must not only know when to perform surgery, but even more importantly, when to withhold an unnecessary surgery. A physician’s primary goal should always be to serve the best interests of his or her patient, not to ameliorate the discomfort of family members or society as a whole. Consequently, a person-centered ap- proach would involve recognizing a family’s discomfort and offering counseling, while at the same time considering the person that is the intersex infant and truly questioning the consequences of treating his or her birth as an emergency.

 

Consent or lack thereof?

Consent is a key complicating factor in any discussion of the ethics of genital-normalizing surgery on an infant. The infant is unable to give informed consent for any medical procedures performed because of “underdeveloped communication and comprehension abilities.”12 Therefore, the parents must speak for their infant, under the assumption that “parents, as the natural guardians of their children, are best situated and best able to make important decisions on their behalf.”13 It would be thoughtless to say that parents should not be able to make medical decisions on an infant’s behalf. But the crucial question to ask is, how informed is the parents’ decision? Bewildered parents, grieving the loss of one image of their child, are presented with a way to normalize an ‘abnormal’ child, to rekindle their dreams for a child who can be socially accepted.

However, surgeries can be performed when a child is old enough to give informed consent and weigh the benefits and risks. Echoing the voices of many other intersex individuals who testified at the San Fran- cisco Human Rights Commission, Ms. Eli seMbessakwini, born with clitoromegaly, “feels that the integrity of her body and her trust was taken from her when there was never anything wrong with her body.”14 The same SF Human Rights Commission report noted that most adult men with small penises and most adult women with large clitorises would not want these parts of their bodies removed.15 Thus, parents providing their consent on behalf of intersex infants should take into account that as adults, these infants likely would not have given consent for surgery. Another intersex witness in the report, Mr. Peter Trinkl, said, “he wishes that the genital surgery had not been done on him. He believes that it is shortsighted to believe that intersex people can be treated through genital surgery.”16 Trinkl “is opposed to genital surgeries that are not medi- cally necessary and are performed without the informed consent of the patient.”17 The legal blockade of parental consent at first seems impene- trable. Nonetheless, it is crucial to examine consent in the case of surgery or treatment with such life-changing consequences. Medical professionals and parents must carefully consider whether they are choosing what is best for the infant in the long term, or if their decisions are colored by a desire for the child to be ‘normal.’

 

Surgery and stigma: the ethics of secrecy

Surgery treats intersex children as pathological, rather than as outliers on a very broad spectrum of sexual anatomy. In keeping with the ‘optimal gender of rearing’ model, the purpose and diagnosis behind the surgeries and hormone injections are not always revealed to the intersex child as he or she grows up. Mr. Jimmy Bruce, an intersex person born with micropenis and assigned a female gender, felt “manipulated and abused by his parents” and “believed that they lied to him by omission and that they were removing his self-determination by telling him what gender to be.”18 The deceptive practices—withholding medical records, neglecting to reveal diagnoses—are unethical because they deny the intersex person access to an intimate aspect of his or her own identity. It also implies that there is a right way to exist as a sexual human being, and that “children who challenge these categories should be reconstructed to fit into (and thereby reinforce) them.”19 The failure of physicians and families to communicate honestly with the intersex individual will only compound feelings of shame and abnormality.

Secrecy not only affects a child’s self-perception but also directly harms the family’s dynamics. Cheryl Chase, the founder of ISNA and an intersex person, writes, “because her parents were not free to communicate the fear, shame and grief, they developed anger toward me, the proximal cause of their suffering.”20 The parents’ impulse toward secrecy stems from the ‘optimal gender of rearing’ model and is a defense mechanism to protect the child (they believe) and protect the normalcy of the family. However, instead of leading to mutual acceptance, this deception allows negative feelings to fester in the parent-child relationship.

 

Conclusion: A person-centered treatment plan

A person-centered approach means separating societal expectations from the individual plan that is best suited to a child’s well-being. Physicians and families, in order to serve this well-being, should un- derstand that the assumption of gender-sex alignment is unnecessarily dichotomous. The range of normalcy in genitalia is arbitrarily defined without a complete understanding of the reasons for these definitions. Linking a child’s body to his or her self-worth as an adult is not only a harmful practice but also a misleading one. Men with small penises and women with large clitorises have consistently said that they “can and do learn to be sexual in ways that satisfy both themselves and their partners.”21 As with any difference—intellectual or physical—the goal must be to accept and appreciate the individuals along with, rather than in spite of, these differences. Consequently, although it may seem more difficult to maintain the ambiguous genitalia, doing so is the patient- centered approach. This is not to say that these children should be raised in a third category of ‘intersex’; in fact, the Intersex Society of North America expressly advocates assigning a male or female gender after hormonal and genetic tests have been done.22 However, the gender as- signed in infancy is only preliminary and without surgery during infancy, sexual genitalia may be changed later in life to match the gender identity of the child. Assigning a gender allows the child to more recognizably fit into social settings, while retaining the genitalia permits the child to ex- perience adult life with the sexual characteristics of his or her choosing, rather than those assigned at birth by a physician. As they grow, children must be given the opportunity to develop their own sense of gender identity and decide for themselves the extent to which they wish to alter their bodies permanently. This collaboration between parent, child, and physician requires a unique combination of trust, patience, and acceptance of uncertainty. Keeping these ideals in mind will reinforce the person-centered approach to intersexuality and lead to more favorable outcomes for intersex infants.

 

  1. Intersex Society of North America. N.p., n.d. Web. 7 May 2011. <http://www.isna.org/>.
  2. Ibid.
  3. Ibid.
  4. De María Arana, Marcus. “A Human Rights Investigation into the Medical of ‘Normalization’ of Intersex People.” Human Rights Commission of the City and County of San Francisco 28 Apr. 2005: 1-110. Print. Page 12.
  5. Dreger, Alice Domurat. “’Ambiguous Sex’ – or Ambivalent Medicine?: Ethical Issues in the Treatment of Intersexuality.” Hastings Center Report (May 1998): 24-35. Print. Page 28
  6. Lee, Peter A, et al. “Consensus Statement on Management of Intersex Disorders .” Pediatrics 118.2 (2006): 488-500. American Academy of Pediatrics. Web. 7 May 2011. <http://aappolicy.aappublications.org/cgi/content/full/pediatrics;118/2/e488>.
  7. Dreger, Alice Domurat. “’Ambiguous Sex’ – or Ambivalent Medicine?: Ethical Issues in the Treatment of Intersexuality.” Hastings Center Report (May 1998): 24-35. Print. Page 29
  8. De María Arana, Marcus. “A Human Rights Investigation into the Medical of ‘Normalization’ of Intersex People.” Human Rights Commission of the City and County of San Francisco 28 Apr. 2005: 1-110. Print. Page 13.
  9. Ford, Kishka-Kamari. “First, Do No Harm: The Fiction of Legal Parental Consent to Genital-Normalizing Surgery.” Yale Law and Policy Review 19.2 (2001): 469-488. JSTOR. Web. 7 May 2011.<http://www.jstor.org/stable/40239572 .>. Page 477.
  10. De María Arana, Marcus. “A Human Rights Investigation into the Medical of ‘Normalization’ of Intersex People.” Human Rights Commission of the City and County of San Francisco 28 Apr. 2005: 1-110. Print. Page 31.
  11. Ford, Kishka-Kamari. “First, Do No Harm: The Fiction of Legal Parental Consent to Genital-Normalizing Surgery.” Yale Law and Policy Review 19.2 (2001): 469-488. JSTOR. Web. 7 May 2011. <http://www.jstor.org/stable/40239572 .>. Page 485.
  12. Ibid. Page 477.
  13. Ibid.
  14. De María Arana, Marcus. “A Human Rights Investigation into the Medical of ‘Normalization’ of Intersex People.” Human Rights Commission of the City and County of San Francisco 28 Apr. 2005: 1-110. Print. Page 34.
  15. Ibid. Page 21.
  16. Ibid. Page 33.
  17. Ibid.
  18. Ibid. Page 35.
  19. Dreger, Alice Domurat. “’Ambiguous Sex’ – or Ambivalent Medicine?: Ethical Issues in the Treatment of Intersexuality.” Hastings Center Report (May 1998): 24-35. Print. Page 29
  20. De María Arana, Marcus. “A Human Rights Investigation into the Medical of ‘Normalization’ of Intersex People.” Human Rights Commission of the City and County of San Francisco 28 Apr. 2005: 1-110. Print. Page 38.
  21. Ibid. Page 21.
  22. Intersex Society of North America. N.p., n.d. Web. 7 May 2011. <http://www.isna.org/>.