Why not just create a new article? Three reasons: (1) today the medical care system for atypical sex is so in flux that it would be difficult to accurately capture the current variety of practices without that representation potentially becoming quickly out of date; (2) the ethical critiques I put forth in 1998 are still worth reviewing, even though some practices have changed; (3) the 1998 article when taken in conjunction with this 2011 epilogue may provide the reader with a sense that medical practice can change for the better through the efforts of patient advocates (including clinicians) who are attuned to evidence and ethics.
Public knowledge of sex variation has radically expanded since 1998. This matters to those interested in the medical treatment of intersex because the public’s increased knowledge has changed how clinicians think. The success of the gay, lesbian, bisexual, and transgender rights movements has also changed how the public and clinicians think about atypical sex. In the early 1990s, many clinicians believed intersex to be taboo, and so they acted from places of shame and secrecy.
Today clinicians find that parents and affected individuals often come with some background knowledge of intersex, often knowledge influenced by the rights movements of sexual minorities. As a consequence, intersex seems today to be generally treated with less shame, secrecy, homophobia, and transphobia.
The expansion of public understanding since 1998 has occurred largely through media attention to specific stories of intersex, including via television programs featuring leaders of the intersex rights movement such as Max Beck, Howard Devore, and Bo Laurent (also known as Cheryl Chase). In 2000, John Colapinto’s excellent book, As Nature Made Him, told the full story of David Reimer, the man identified at the start of my 1998 article by Money’s pseudonyms for him (“John/Joan”). Tragically, in 2004, Reimer committed suicide, an outcome that added to the public sense that Reimer had been abused by a problematic medical system based on shame, outdated sex norms, and lies.
In 2002, Jeffrey Eugenides' novel Middlesex told the life story of a person with the intersex condition 5-alpha reductase deficiency, including an encounter with a John Money-like clinician. Middlesex sold over three million copies and even landed on Oprah’s Book Club, and curiously, it seemed to lead many doctors to rethink the treatment of intersex, in spite of being a fictional tale.
In 2009, international attention landed (unwittingly) on Caster Semenya, a young South African runner whose sex was called into question at the international games in Berlin. For the first time in response to a sex-test case in sports, an enormous—and enormously-open—international public dialogue occurred, with many commentators outraged at the way Semenya had been treated by sports officials and doctors. Her case has forced the International Olympic Committee and the International Association of Athletics Federations (as well as smaller sports bodies) to revise their policies. The general theme among public commentators has focused on the rights of sexually atypical athletes to be treated as fully respected human beings. This represents real progress.
Clinicians today are much more likely to tell parents and affected individuals the full details of the intersex conditions with which they’re dealing. Today when I visit with support groups, I meet teenagers who know their diagnoses and their full medical histories, and I meet parents who talk openly around their young children about their children’s diagnoses and medical histories.
This is a most radical and welcome development. Some clinicians actively refer patients and their families to the diagnosis-specific support groups, but many still do not. They typically tell me that they worry about what misinformation and “bad attitudes” their patients will pick up at the support groups, even though there are many high quality support groups like the Androgen Insensitivity Syndrome Support Group and the Hypospadias and Epispadias Association.
Probably the most visible change in medical practice since 1998 has been a shift in the nomenclature from “intersex” and words based on the root “hermaphrodite” (e.g., “male pseudohermaphrodite”) to “disorders of sex development” (DSD). I was one of the people who pushed for this change because: many clinicians refused to recognize conditions like hypospadias and ambiguous genitalia resulting from CAH as “intersex,” so, while using the term “intersex,” we could not get them to see the common problems and much-needed common solutions; many parents were frightened by the term “intersex,” and so rushed to try to make it go away via surgery; the term “intersex” had become so politicized as to be wrapped up with adult queer rights in a way that muddied questions of care for sexually atypical children; many transgender (but not conventionally intersex) activists had started to adopt “intersex” for themselves, changing what “intersex” meant.
The term “disorders of sex development” was officially adopted in 2006 by a consensus meeting in Chicago of the major North American and European pediatric endocrinology societies. DSD refers to “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical.” My colleagues and I also used the term “DSD” for the two handbooks I coordinated and edited in 2005, one a set of clinical guidelines for pediatric care of DSD, the other a handbook for parents. These handbooks represented the first (and remain the only) consensus statements involving all three stakeholder groups, namely affected adults, parents of affected individuals, and specialist clinicians.
The “Chicago consensus” of the pediatric endocrinology groups represented a great leap forward in terms of particular practices. For example, the consensus document states that “psychosocial care provided by mental health staff with expertise in DSD should be an integral part of management to promote positive adaptation.” The consensus acknowledges the dangers of genital surgeries and states that, for clitoroplasties at least, “emphasis is on functional outcome rather than a strictly cosmetic appearance.”
The consensus also considers the data showing that testicular cancer is less common in cases of complete AIS than previously believed and suggests that watchful waiting (instead of removal with HRT) may be a reasonable option for women with complete AIS whose testes show no cancer. This is a sign that clinicians are becoming more long-term-data-driven and less phobic about sex atypical (but healthy) organs being left alone in patients.
Specialists have also moved away from sex-changing baby males with small penises (“micropenis”). They also have moved away from recommending vaginoplasties in very young children, both because early vaginoplasties so often fail and require major revision at puberty, and because they require vaginal dilations which may traumatize children and the parents obligated to carry out dilations on their toddlers.
Unpublished survey data from pediatric psychologist David Sandberg of the University of Michigan suggest that clinicians’ ideas about DSD care have shifted more than their practices, but a shift in attitude often precedes a shift in behavior, so this is hopeful. I find most exciting, in the DSD clinical literature, the move away from dialogues unreasonably focused on the nature-nurture debate of gender and sexual orientation towards dialogues more reasonably focused on reducing shame, secrecy, and medical trauma.
There is also substantially more discussion of what informed consent and a shared decision-making approach (where parents have real say) would really look like in these cases. Since the closing of the Intersex Society of North America (ISNA) in 2008, the two organizations most actively in the lead in organizing clinical reform are Accord Alliance (focusing on implementing progressive team care for DSD) and Advocates for Informed Choice (focusing on using legal tools to defend the rights of people with atypical sex and their parents’ rights).
I wish I could report that the “monster approach” to children with sex anomalies has become history, but we still see signs that this population (and their mothers) remains at risk for being treated extraordinarily in terms of their rights. For example, several colleagues and I have recently thrown light on what appears to have amounted to years of unconsented, risky, and badly managed medical experimentation on hundreds of pregnant women in an effort to prevent their daughters from being born with ambiguous genitalia.
We have also raised concerns about “clitoral sensory testing” performed on girls aged six and up who had been subjected to reduction clitoroplasties for cosmetic reasons before they are old enough to assent or consent to the surgery. This testing has included a surgeon touching conscious girls’ genitals with Q-tips and “medical vibratory devices” and asking the girls how well they can feel him touching.
It is hard to imagine any other population of girls being subjected to such practices. Most disturbingly, some commentators on these recent stories have tried to argue that these extraordinary treatments should not trouble us because girls with ambiguous genitalia are simply not normal. Such attitudes suggest we still have a way to go.