Yet another study has examined gender outcomes in women with CAH. This time the focus is sexual orientation. This makes me think again of a paper psychologist Tom Mazur presented at the 2008 meeting of the Lawson Wilkins Pediatric Endocrine Society. Tom and his colleagues did a literature review of all of the studies they could find on outcomes across DSD diagnoses. They found that less than 1% of all outcome studies assess quality of life; the rest largely deal with gender change later in life, degrees of gender-atypical behavior, sexual orientation etc.
This is unfortunate and also not surprising. Scientific interest in intersexuality stemmed from an interest in human psychosexual development in general, which is tied to long-standing debates over the relative roles of nature and nurture in determining physical and behavioral differences between men and women.
Researchers have looked for ways to assess the relative role of biology and socialization in making us men and women. Girls with CAH have been of particular interest because they provide an “experiment in nature” due to their atypical exposure to androgens in utero, which not only masculinize the genitals, but, researchers hypothesize, the brain, leading to more male-typical behavioral traits, including what is understood as male-typical sexual desire (i.e., desire for women, or homosexuality). These theories are united by the claim that sex hormones play an important role in the production of sex differences, though researchers and theorists differ in their opinions about which behaviors are affected.
The unfortunate consequence of this overwhelming focus on gender outcomes is that after fifty years we know surprisingly little about the factors that affect quality of life for children and adults with DSD—a fact that too few researchers are seeking to rectify.
