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Intersex Claims and Origins

By D. Joy Riley, MD, MA (Ethics) | August 17, 2017

by D. Joy Riley, MD, MA (Ethics)

The international advocacy group, Human Rights Watch, recently published an article entitled “I Want to Be Like Nature Made Me,” seeking to ban intersex surgery.  In that document, they made the claim:

“Intersex people are not rare, but they are widely misunderstood. Biology classes often oversimplify a fundamental reality. We are taught that sex is dimorphic: simply male or female. But sex, in reality, is a spectrum—with the majority of humans appearing to exist at one end or the other. In fact, as many as 1.7 percent of babies are different from what is typically called a boy or a girl....”

The claim of 1.7 percent of babies being “intersex” has its origins in the writings of developmental biologist Anne Fausto-Sterling. In her article from The Sciences in 1993, Fausto-Sterling proposed five sexes, including in addition to male and female:

“...the so-called true hermaphrodites, whom I call herms, who possess one testis and one ovary (the sperm- and egg-producing vessels, or gonads); the male pseudohermaphrodites (the 'merms'), who have testes and some aspects of the female genitalia but no ovaries; and the female pseudohermaphrodites (the 'ferms'), who have ovaries and some aspects of the male genitalia but lack testes.”

She concluded, “Indeed, I would argue further that sex is a vast, infinitely malleable continuum that defies the constraints of even five categories.”

Leonard Sax, MD, PhD, responded to Fausto-Sterling in the Journal of Sex Research in 2002:

“Fausto-Sterling’s argument that human sexuality is a continuum, not a dichotomy, rests in large measure on her claim that intersex births are a fairly common phenomenon. Specifically, Fausto-Sterling computes the incidence of intersexual births to be 1.7 per 100 live births, or 1.7%. To arrive at that figure, she defines as intersex any ‘individual who deviates from the Platonic ideal of physical dimorphism at the chromosomal, genital, gonadal, or hormonal levels.’

“This definition is too broad. Fausto-Sterling and her associates acknowledge that some of the individuals thus categorized as intersex ‘are undiagnosed because they present no symptoms.’”

Among others included in Fausto-Sterling’s large tent of “intersex” would be persons with Turner Syndrome, Klinefelter Syndrome, late-onset congenital adrenal hyperplasia and hypospadias. The first three named do not have ambiguous genitalia and are not clinically regarded as intersex, and indeed, most cases of hypospadias are not a part of an intersex disorder. Sax appropriately concludes that, “A definition of intersex which encompasses individuals who are phenotypically indistinguishable from normal is likely to confuse both clinicians and patients.”

Human Rights Watch and others are interested in gaining attention for intersex conditions. Publishing an inflated number may help with that in the short term, but truth-telling (or lack thereof) has long-term consequences. An explanation is in order. If readers are to be educated, writers have a responsibility to adequately inform. That usually—and appropriately—begins with definitions.
The definition proposed by Leonard Sax, built upon urologist John Weiner’s definition, has much to commend it. In 1999, Wiener proposed intersex be defined as “a discordance between phenotypic sex and chromosomal sex.” The difficulty with that definition, according to Sax, would occur if a patient was a mosaic of 46, XX and 46, XY, and had both a penis and a vagina. There would be no discordance, yet the patient would be truly intersex. Sax’s proposal: “A more comprehensive, yet still clinically useful definition of intersex would include those conditions in which a) the phenotype is not classifiable as either male or female, or b) chromosomal sex is inconsistent with phenotypic sex.

Sax concludes:

“The available data support the conclusion that human sexuality is a dichotomy, not a continuum. More than 99.98% of humans are either male or female. If the term intersex is to retain any clinical meaning, the use of this term should be restricted to those conditions in which chromosomal sex is inconsistent with phenotypic sex, or in which the phenotype is not classifiable as either male or female. The birth of an intersex child, far from being ‘a fairly common phenomenon,’ is actually a rare event, occurring in fewer than 2 out of every 10,000 births.”

While the number of intersex children born is very small, they and their families are in need of particular compassion in terms of physical, mental and spiritual care.  Skilled, caring physicians and other healthcare professionals are integral in addressing the needs of such children who fall outside the normal male and female phenotype. Caring for these individuals does not, however, require that we blur or erase all understanding of what it means to be male or female. Exceptions do not rules make.

The Human Rights Watch article calls for an outright ban on corrective surgery, and it is neither a comfortable nor an unbiased read. It opens with a trigger warning:  “Reader advisory: This report contains graphic descriptions of traumatic experiences, often affecting children.”

The acknowledgments include this description of the background work:

“This report is the result of a collaboration between interACT and Human Rights Watch. The primary field research was conducted by Dr. Suegee Tamar-Mattis, an intersex person and family physician in California working as a consultant to Human Rights Watch, and Kyle Knight, a Human Rights Watch researcher based in New York. Kimberly Zieselman, executive director of interACT, and Anne Tamar-Mattis, legal director of interACT, provided outreach support and analytical guidance throughout the research process.”

Leonard Sax’s response to Anne Fausto-Sterling needs to be read alongside this report, certainly. Finally, good medicine includes the critical assessment of current practices. Perhaps now would be an opportunity for that evaluation.

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