|Graphic: Cathleen Heard|
William Reiner, a child and adolescent psychiatrist and urologist at the Johns Hopkins Children's Center, reported the studies at the Lawson Wilkins Pediatric Endocrine Society meeting in Boston on May 12, 2000. "These children demonstrate that normal male gender identity can develop not only in the absence of the penis, but even after the removal of the testicles and unequivocal rearing as female. The studies suggest that male gender identity is directly related to normal male patterns of hormone exposure in utero," he says. The investigations began in 1995.
In one study, Reiner and director of pediatric urology John Gearhart followed 14 children born with cloacal exstrophy. "These kids have a pelvic field defect that is probably a problem in genetic timing in the embryo, a control gene that is turned off too soon, or on too late. A number of anomalies are associated with this problem. A boy has no penis, but normal testicles. In a girl, there is no clitoris but usually a vagina. She is raised as a girl," explains Reiner.
The first study followed 14 XY individuals--genetic males, with an intersex appearance of no penis but normal testicles, and normal male hormone levels at birth. Twelve of the children were reassigned female, yet the parents reported that all displayed typical male behavior throughout childhood. Six of the 12 switched themselves to the male gender between the ages of 5 and 12 years, and the two children not subjected to surgery are psychologically well-adjusted males who do not have penises, Reiner reports. "All of these children act like boys as soon as anyone observes them," he adds. Reiner describes one telling case of a child reassigned to being female. "The dad of one 2 1/2-year-old had raised another son and daughter. He said that the 2 1/2-year-old acts exactly like his son, no matter what they do. He loves cars, trucks, and Legos, makes guttural sounds when playing with them, and doesn't go near dolls." Reiner advised the parents to raise the child as a boy, which they had already decided to do.
The second study describes 12 additional children Reiner sees at the Child and Adolescent Psychiatry Clinic for Gender Identity and Psychosexual Disorders at Hopkins. Eight of the 12 have reassigned themselves to the gender dictated by their XY chromosomes and molded by their prenatal hormone exposure. Apparently, the 60 millionths of an ounce of testosterone surging through a male body does more than build a penis.
The controversy over sex reassignment came to public attention three years ago with an account of the life of "John/Joan" that won a National Magazine Award.1 "John/Joan," actually the man now known as David Reimer, was born in 1965 as Bruce, identical twin to Brian. But he was raised as Brenda from the age of 22 months, when he was castrated after his parents approved sex reassignment following a botched circumcision performed at 8 months. Hailed as a resounding success in the literature by the psychologist in charge, Hopkins' John Money, the case served as a precedent for many others. But reality was far different.2 Brenda, always uneasy in her dress-clad body, actually suffered a terrible childhood of relentless ridicule and confusion, and when finally told the truth at age 14, immediately became David. He eventually married, adopted his stepchildren, and today is a grandfather.
The medical community also learned the true outcome of David's case about three years ago and faced the inescapable conclusion that perhaps thousands of individuals may have been sex-reassigned into misery.3 In a paper that went against three decades of dogma, University of Hawaii, Manoa, professor of anatomy and reproductive biology Milton Diamond and psychiatrist Keith Sigmundson revealed David's disastrous past. The pair had interesting ties to the case: Diamond was part of the research team at the University of Kansas that had identified the masculinizing effects of testosterone on fetal guinea pigs in 1959; Sigmundson was Reimer's psychiatrist in his hometown of Winnipeg.
Candidates for sex reassignment aren't rare. About one in 2,000 births is an "intersex," a person with ambiguous genitalia, or reproductive structures from both sexes. And a few cases of "ablatio penis" similar to Bruce/Brenda/David dot the medical literature.4 Thanks to Diamond, Sigmundson, and David Reimer, some of these people are beginning to speak out.
The Web site for the Ann Arbor-based Intersex Society of North America (ISNA) reveals further, albeit anecdotal, evidence of problems with sex reassignment.5 Here, reassigned females report overwhelming confusion during childhood and adolescence, and either bisexuality, homosexuality, or avoidance of sexual activity. All are angry at the surgeries they endured without their consent or understanding. In contrast, sex reassignment surgery works well for transsexuals, whose gender identity is at odds with their chromosomal and gonadal sex, and who request the surgery.
Making a Biological "He" into a Social "She"
The traditional medical decision to endow a child whose penis never developed fully or was damaged is based on a yardstick of sorts. If a newborn's stretched organ is longer than an inch, he is deemed a he; if the protrusion is under 3/8 of an inch, she is a she. Those falling in between have their organs shortened, a penis becoming a clitoris. Further plastic surgeries and hormone treatments during puberty complete the transformation, with external female genitalia sculpted from scrotal tissue.
Gary Berkovitz, director of pediatric endocrinology at the University of Miami School of Medicine, explains the procedures. "We remove the testes because they would make testosterone and virilize a girl. The phallus is recessed. Current techniques emphasize maintenance of innervation, and experimental evidence indicates that sensitivity in the new clitoris is preserved. However, none of the children has grown to adulthood yet to see if it works. The new techniques are very different than what was done 30 to 35 years ago."
Hormones are part of the picture too. "We initially try to re-create a normal puberty, give a little estrogen at first, then progesterone. The girl won't bleed because there is no uterus, but she can have normal cycles. Often it is possible to do this with birth control pills as the estrogen supplements. Breasts develop too, given appropriate hormonal stimulation," Berkovitz says.
Female reassignments are typically done within days of birth; the more complex phalloplasty is often undertaken later. "Surgeons can make a vagina relatively easily, but it is hard to make a penis that is functional," says Reiner. Berkovitz describes the technique. "Skin and muscle bundles and accompanying vasculature are brought to an area of the penis to supplement the length. In most cases, there is a small phallus with corporal tissue capable of erection and skin capable of normal sensation." Testosterone injections or patches are given beginning at puberty, although sometimes low doses are administered earlier for social reasons. "Little boys have to learn to pee standing up. And little children also look at each other" and can be cruel when a boy appears to be different, he adds.
But all too often, appearances cannot mask the upheaval within. Happy endings for XY individuals assigned to femaleness, at least so far, appear to be rare, or at least unreported. Adding to the trauma are the procedures. "The surgeries permanently destroy fertility and negatively impact sexual sensation, as well as substantially increasing the risk of infections, scarring, and so on," says Alice Dreger, assistant professor of science and technology studies at Michigan State University in East Lansing, who has researched and written extensively on intersexuality.6
A Question of Ethics
The reasons for sex reassignment have ranged from nature/nurture considerations, to good intent, to the practical matter of surgical expediency. "There was no scientific evidence about what was the right way to do things. Mistakes have been made. A lot of people wanted to do well by their patients and made decisions according to what seemed the right thing to do," relates William Futrell, a professor of plastic surgery at the University of Pittsburgh Medical Center.
But some in the field question the assumptions fueling those good intentions. "The first erroneous assumption is that sexual intercourse is the most important thing that a human does, which is certainly not true. Second is that the penis is the most important sexual organ. That is simply idiotic. The brain is the most important sexual organ. The brain tells the individual what to do with the penis, the vagina, or any other part of the anatomy," says Reiner.
He and Dreger trace the roots of sex reassignment to the behavioral movement of the 1950s and 1960s. "Tremendous importance has been placed on the penis. But to a boy born without a penis, he doesn't know what he is missing. It was felt that when such a boy was born, he could be converted to whatever you wanted," says Reiner. John Money, who declined comment for this article, is widely regarded as the father of the field. "Since the work of John Money starting in the 1950s, many clinicians treating intersex (and supposedly related conditions like traumatic loss of the penis in early childhood) have believed that gender identity is mostly determined by nurture, specifically social/parental/self responses to having a phallus or not having a visible phallus early in childhood," adds Dreger.
It is the traditional timing of female sex reassignment that opens a bioethical can of worms. "Since the 1960s, the paradigm has been to assign kids with pelvic field defects as females within two days of birth, and they are castrated," reports Reiner. But that paradigm may be shifting, adds Dreger, to delaying surgery until the person can decide. "Gender identity is very complicated, and it looks from the evidence like the various components interact and matter in different ways for different individuals. That's why unconsenting children and adults should never be subject to cosmetic, medically unnecessary surgeries designed to alter their sexual tissue. We cannot predict what parts they may want later," Dreger says.
To help shift the age at which sex reassignment is offered, the Harry Benjamin International Gender Dysphoria Association publishes standards of care for treating gender identity disorders.7 A new set will be published this summer. The stated goal of treatment is "lasting personal comfort with the gendered self in order to maximize overall psychological well-being and self-fulfillment," which can hardly be established at two days of age. "Harry Benjamin practiced in the 1950s. Christine Jorgensen was his patient. [Christine, born George, had surgery to become female.] Nobody would operate on her here, so she went to Denmark. Dr. Benjamin was interested in these patients, and developed criteria for treating them. He made a simple statement, that if you can't change the mind to fit the body, then change the body to fit the mind," says Futrell. Sex reassignment attempts to do just the opposite.
For some patients, sex reassignment to create female genitalia may still be appropriate. And care has come a long way from the time when groups of curious interns would gaggle at the exposed crotch of a mortified intersexed child, as several people recall in Dreger's book. "Most major institutions have committees that are involved in medical, legal, social, and religious aspects that help parents make decisions," says Futrell. And he adds that the technology to reconstruct a penis, rather than removing tissue to mimic a female, has come a long way.
With hindsight from the field of bioethics, born in the 1970s, sex reassignment surgery as performed in the 1960s retrospectively hit all the buttons--paternalism, informed consent, the doctor-patient relationship, and the Hippocratic oath to "do no harm." Says Dreger, "The medical treatment of intersex and traumatic loss of the penis has been a 40-plus-year, poorly run, unethical experiment. Someday this will rank up there with Tuskegee." But with the new knowledge of long-term outcomes, improved surgical techniques, and patient choice, sex reassignment in the future promises to be a more carefully considered option. S
Ricki Lewis (email@example.com) is a contributing editor for The Scientist.
1. J. Colapinto, "The true story of John/Joan," Rolling Stone, 54-73, 92-6, December 11, 1997.
2. J. Colapinto, As Nature Made Him, New York, HarperCollins Publishers, 2000.
3. M. Diamond and H.K. Sigmundson, "Sex reassignment at birth. Long-term review and clinical implications," Archives of Pediatric Adolescent Medicine, 151:298-304, 1997.
4. S.J. Bradley et al. "Experiment of nurture: ablatio penis at 2 months, sex reassignment at 7 months, and a psychosexual follow up in young adulthood," Pediatrics, 102:e9, 1998.
5. Intersex Society of North America, www.isna.org
6. Alice Domurat Dreger, Intersex in the Age of Ethics, Hagerstown, Md., University Publishing Groups Inc., 1999.
7. Harry Benjamin International Gender Dysphoria Association, www.hbigda.org