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I suspect that ethicists have ignored the question of intersex treatment because like most people they assume the phenomenon of intersexuality to be exceedingly rare. It is not. But how common is it? The answer depends, of course, on how one defines it. Broadly speaking, intersexuality constitutes a range of anatomical conditions in which an individual's anatomy mixes key masculine anatomy with key feminine anatomy. One quickly runs into a problem, however, when trying to define "key" or "essential" feminine and masculine anatomy. In fact, any close study of sexual anatomy results in a loss of faith that there is a simple, "natural" sex distinction that will not break down in the face of certain anatomical, behavioral, or philosophical challenges.
Sometimes the phrase "ambiguous genitalia" is substituted for "intersexuality," but this does not solve the problem of frequency, because we still are left struggling with the question of what should count as "ambiguous." (How small should a baby's penis have to be before it counts as "ambiguous"?) (1)
Dr. Dreger explores this idea in greater depth in her book "Hermaphrodites and the Medical Invention of Sex." Look for it at our bookshelf.
That said, however, people still want to know how many people's lives are strongly affected by intersexuality. Here are some statistics drawn from an article by Brown University professor Anne Fausto-Sterling, which reviews dozens of articles from the medical literature from 1955 to 1998 to produce some numeric estimates.
The following statistics are drawn from the work of Dr. Fausto-Sterling's and her colleagues (2). Note that the frequency of some of these conditions, such as congenital adrenal hyperplasia, differs for different populations. These statistics are approximations.
| Not XX and not XY | one in 1,666 births |
| Klinefelter (XXY) | one in 1,000 births |
| Androgen insensitivity syndrome | one in 13,000 births |
| Partial androgen insensitivity syndrome | one in 130,000 births |
| Classical congenital adrenal hyperplasia | one in 13,000 births |
| Late onset adrenal hyperplasia | one in 66 individuals |
| Vaginal agenesis | one in 6,000 births |
| Ovotestes | one in 83,000 births |
| Idiopathic (no discernable medical cause) | one in 110,000 births |
| Iatrogenic (caused by medical treatment, for instance progestin administered to pregnant mother) | no estimate |
| 5 alpha reductase deficiency | no estimate |
| Mixed gonadal dysgenesis | no estimate |
| Complete gonadal dysgenesis | one in 150,000 births |
| Hypospadias (urethral opening in perineum or along penile shaft) | one in 2,000 births |
| Hypospadias (urethral opening between corona and tip of glans penis) | one in 770 births |
| Total number of people whose bodies differ from standard male or female | one in 100 births |
| Total number of people receiving surgery to "normalize" genital appearance | one or two in 1,000 births |
source: http://www.isna.org/frequency.html 13feb01
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