Ambiguous Sex”—or Ambivalent Medicine?: Ethical Issues in the Treatment of Intersexuality

A number of events have lately aroused substantial public interest in intersexuality (congenital “ambiguous sex”) and “reconstructive” genital surgery. Perhaps the most sensational of these is the recent publication of unexpected long-term outcomes in the classic and well-known “John/Joan” case.[1] “John” was born a typical XY male with a twin brother, but a doctor accidentally ablated John’s penis during a circumcision at age eight months. Upon consultation with a team of physicians and sexologists at the Johns Hopkins Hospital (circa 1963) it was decided that given the unfortunate loss of a normal penis John should be medically reconstructed and raised as a girl–“Joan.” Surgeons therefore removed John/Joan’s testes and subsequently subjected Joan to further surgical and hormonal treatments in an attempt to make her body look more like a girl’s. The team of medical professionals involved also employed substantial psychological counseling to help Joan and the family feel comfortable with Joan’s female gender. They believed that Joan and the family would need help adjusting to her new gender, but that full (or near-full) adjustment could be achieved. For decades, the alleged success of this particular sex reassignment had been widely reported by Hopkins sexologist John Money and others as proof that physicians could essentially create any gender out of any child, so long as the cosmetic alteration was performed early. Money and others repeatedly asserted that “Johns” could be made into “Joans” and “Joans” into “Johns” so long as the genitals looked “right” and everyone agreed to agree on the child’s assigned gender. The postulates of this approach are summarized succinctly by Milton Diamond and Keith Sigmundson: “(1) individuals are psychosexually neutral at birth and (2) healthy psychosexual development is dependent on the appearance of the genitals” (p. 298). While not a case of congenital intersexuality, the John/Joan case was nevertheless used by many clinicians who treat intersexuality as proof that in intersex cases the same postulates should hold. The keys seemed to be surgical creation of a believable sexual anatomy and assurances all around that the child was “really” the assigned gender. But reports of the success of John/Joan were premature–indeed, they were wrong. Diamond and Sigmundson recently interviewed the person in question, now an adult, and report that Joan had in fact chosen to resume life as John at age fourteen. John, now an adult, is married to a woman and, via adoption, is the father of her children. John and his mother report that in the Joan-years, John was never fully comfortable with a female gender identity. Indeed, Joan actively attempted to resist some of the treatment designed to ensure her female identity; for instance, when prescribed estrogens at age twelve, Joan secretly discarded the feminizing hormones. Depressed and unhappy at fourteen, Joan finally asked her father for the truth, and upon hearing it, “All of a sudden everything clicked. For the first time things made sense, and I understood who and what I was” (p. 300). At his request, John received a mastectomy at age fourteen, and for the next two years underwent several plastic surgery operations aimed at making his genitals look more masculine.[2] Diamond and Sigmundson are chiefly interested in using this new data to conclude that “the evidence seems overwhelming that normal humans are not psychosocially neutral at birth but 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.”[3] In other words, sexual nature is not infinitely pliable; biology matters. In their report, Diamond and Sigmundson also take the opportunity of publication to comment on the problem of the lack of long-term follow-up of cases like these. But what is also troubling is the lack of ethical analysis around cases like this–particularly around cases of the medical treatment of intersexuality, a phenomenon many orders of magnitude more common than traumatic loss of the penis.

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