The spectrum of sex development: Eric Vilain and the intersex controversy

Sara Reardon in Nature:

As a medical student in Paris in the 1980s, Eric Vilain found himself pondering the differences between men and women. What causes them to develop differently, and what happens when the process goes awry? At the time, he was encountering babies that defied simple classification as a boy or girl. Born with disorders of sex development (DSDs), many had intermediate genitalia — an overlarge clitoris, an undersized penis or features of both sexes. Then, as now, the usual practice was to operate. And the decision of whether a child would be left with male or female genitalia was often made not on scientific evidence, says Vilain, but on practicality: an oft-repeated, if insensitive, line has it that “it's easier to dig a hole than build a pole”. Vilain found the approach disturbing. “I was fascinated and shocked by how the medical team was making decisions.”

Vilain has spent the better part of his career studying the ambiguities of sex. Now a paediatrician and geneticist at the University of California, Los Angeles (UCLA), he is one of the world's foremost experts on the genetic determinants of DSDs. He has worked closely with intersex advocacy groups that campaign for recognition and better medical treatment — a movement that has recently gained momentum. And in 2011, he established a major longitudinal study to track the psychological and medical well-being of hundreds of children with DSDs. Vilain says that he doesn't seek out controversy, but his research seems to attract it. His studies on the genetics of sexual orientation — an area that few others will touch — have attracted criticism from scientists, gay-rights activists and conservative groups alike. He is also a medical adviser for the International Olympic Committee, which about five years ago set controversial rules by which intersex individuals are allowed to compete in women's categories.

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