Readon, ‚Spectrum of sex development‘
Back in May, Nature published an article by Sara Readon ‚The spectrum of sex development: Eric Vilain and the intersex controversy‚ which I only came across after having seen a German translation. The article is worth reading, and I give a quick summary here:
Readon in her article focusses on geneticist Eric Vilain and his research including his research on intersex. Vilain was involved in what became known as the Chicago Consensus, a consensus paper by a large number of medical expert which among other thing proposed the now common vocabulary of ‚disorder of sexual development‘. This was praised by some as a (late) replacement of older terms including ‚hermaphrodititism‘, and adopted for exapmple by ISNA, although other activists quickly pointed out that ‚disorder‘ still was stigmatizing.
Vilain founded an intersex research network, which has gathered data on the consequences of surgery on infant inersex people. On the whole, Vilain was and still is opposed to early surgery, but is likewise explicit that in some cases he endorses it. This in turn has led to criticism by intersex activists and their supporters including a number of scholars who previously had been involved in Vilain’s project, including most prominently Alice Dreger. (See the blogpost in which she announced her resignation as bioethicist in Vilain’s network: http://alicedreger.com/DSD_human_rights.) Vilain was also a leading expert in the formulation of the 2012 revision of ‚gender verification‘ by the IOC – rules which forced athletes having too high natural testosterone to undergo medically unnecessary surgery including gonadectomy and clitorectomy (a gross case involving four athletes was published by Patrick et al. 2013).
Fénichel Patrick, Paris Françoise, Philibert Pascal, Hiéronimus Sylvie, Gaspari Laura, Kurzenne Jean-Yves, Chevallier Patrick, Bermon Stéphane, Chevalier Nicolas and Sultan Charles, ‚Molecular Diagnosis of 5α-Reductase Deficiency in 4 Elite Young Female Athletes Through Hormonal Screening for Hyperandrogenism‘, The Journal of Clinical Endocrinology & Metabolism 98 (2013), E1055-E1059. [http://press.endocrine.org/doi/full/10.1210/jc.2012-3893.]