What's wrong with the way intersex has traditionally been treated?

In the 1950s, a team of medical specialists at Johns Hopkins University developed what has come to be called the “optimum gender of rearing” system for treating children with intersex. The notion was that the main thing you had to do in cases of intersex was to get the gender assignment settled early, so kids would grow up to be good (believable and straight) girls and boys.

Under the theoretic leadership of psychologist John Money, the Hopkins team believed that gender was all about nurture—that you could make any child into a “real” girl or boy if you made their bodies look right early (before about 18 months of age), and made them and their parents believe the gender assignment.

Though the Hopkins team wrote early on that children should be told the truth about their intersex histories in age-appropriate ways, in practice many medical care providers lied to patients or actively withheld medical history information from them.1 Medical textbooks frequently gave doctors advice about how to lie to patients with intersex.2

As the Hopkins model spread throughout the developed world, surgeons performed cosmetic genital surgeries on intersex children without their consent, believing this was necessary and efficacious. Endocrinologists, meanwhile, manipulated patients’ hormones to try to get the bodies of patients to do what they thought was necessary not just for physical health, but for psycho-social health (i.e., getting the body to look sexually “normal”).

So what was wrong with this model?

To start with, lying to patients is not only unethical, it is bad medicine. Patients who were lied to figured that much out, and often stopped getting medical care they needed to stay healthy. (For example, some stopped taking hormone replacement therapy—critical after gonadectomy—and wound up with life-threatening osteoporosis at an early age.) They also suffered psychological harm from these practices, because they got the message that they were so freakish even their doctors could not speak the truth of their bodies to them. (A lot of doctors still have not told their present and former patients the name of their conditions. Some still withhold medical records from patients and from parents/guardians of minor children.)

Second, the system was and is literally sexist: that is, it treats children thought to be girls differently than children thought to be boys. In this approach (still going on at Hopkins so far as we can tell), doctors’ primary concern for children thought to be girls is preservation of fertility (not sexual sensation), and for children thought to be boys, size and function of the phallus.

Third, the “standards” used for genital anatomy have been arbitrary and illogical. For example, under the “optimum gender of rearing” model, boys born with penises doctors considered small were made into girls—even though other doctors believed (and showed3) they could be raised as boys without castration, genital surgery, and hormone replacement. Girls with clitorises their doctors think are “too big” still find themselves in operating theatres with surgeons cutting away at their healthy genital tissue.4

Paradoxically, though all medical experts agree the identification of intersex anatomy at birth is primarily a psycho-social (not medical) concern, it is still treated almost exclusively with surgery. Parental distress is treated with the child being sent off to surgery. This is not an appropriate form of care for parents or children.5

There is no evidence that children who grow up with intersex genitals are worse off psychologically than those who are altered. In fact, there is evidence that children who grow up with intersex genitals do well psychologically. In other words, these surgeries happen before the age of assent or consent without real cause. “Ambiguous” genitalia are not diseased, nor do they cause disease; they just look funny to some people.

There is substantial evidence that people who have been treated under the “optimum gender of rearing” model have suffered harm, psychological and physical. This does not mean doctors intended to harm their patients; far from it. But good intentions are inadequate reasons to maintain a practice that has shown to be unethical and unscientific.

Finally, parents consenting to intersex surgeries do not appear to be fully informed about the available evidence, about alternatives available to them, about the risks associated with surgeries, or about the theoretical problems underlying the “optimum gender of rearing” approach. For example, they are typically not told the evidence that gender identity may emerge to an important degree from prenatal hormonal actions on the brain—and thus, that you can’t “make” a child a maintain a particular gender identity in the long term by doing surgery on him or her in infancy.6

To read more about the problems with the traditional treatment of intersex, see Alice Dreger’s ‘Ambiguous Sex’—or Ambivalent Medicine, The Hastings Center Report, May/June 1998, vol. 28, issue 3, pp. 24-35.

To read more about how the concealment model differs from ISNA’s recommended patient-centered model, take a look at our chart called Shifting the Paradigm of Intersex Treatment.

To read more about the history of intersex treatment and the intersex rights movement, go to our FAQ called What’s the history behind the intersex rights movement? and check out the autobiographical article by Dr. Jorge Daaboul.

1 For examples of people who were lied to and deceived, check out Hermaphrodites Speak and Chrysalis.

2 For documentation, see Alice Domurat Dreger, Ambiguous Sex—or Ambivalent Medicine? Ethical Issues in the Treatment of Intersexuality. Hastings Center Report, 28, 3 (May/June 1998): 24-35.

3 For evidence boys with small penises do well without sex re-assignment, see Justine M. Reilly and C. R. J. Woodhouse, “Small Penis and the Male Sexual Role,” Journal of Urology, 142 (1989): 569-571, and see the autobiography of Hale Hawbecker in Intersex in the Age of Ethics.

4 See what UCSF’s Laurence Baskin and Indiana’s Richard Rink had to say at the American Academy of Pediatrics Urology Section’s 2004 annual meeting.

5 See Edmund G. Howe, “Intersexuality: What Should Care Providers Do Now,” Journal of Clinical Ethics, 9, 4 (Winter 1998): 337-344, reprinted in Intersex in the Age of Ethics.

6 On this point, see William G. Reiner and John P. Gearhart, “Discordant sexual identity in some genetic males with cloacal exstrophy assigned to female sex at birth,” New England Journal of Medicine, 350, 4 (Jan. 22, 2004): 333-341, summarized and reviewed by Vernon Rosario; see also our FAQ Who was David Reimer?; and see Pediatric Assignment of Sex: A Critical Reappraisal.