In their response1 to our initial review of the evidentiary deficit behind surgery on infants with differences in sex development (DSD)2, Lee and Houk have made several counter-factual arguments against delaying cosmetic, medically unnecessary procedures. They begin by disparagingly dismissing calls for a moratorium on infant surgery as scholarly dogma, even though the UN’s Special Rapporteur and the Parliamentary Assembly of the Council of Europe have fully endorsed such a moratorium2. The World Health Organization has now joined those esteemed authorities, sharply criticizing medically unnecessary surgery on children with DSD and endorsing a ban on all procedures risking sterility in patients3.
The sole evidentiary claim offered by Lee and Houk is that “preliminary data” about “new surgical techniques” warrant continued early surgery1, contradicting the Annecy Working Party’s own findings on the quality of life of patients and the balance of properly vetted evidence4. On the Working Party’s behalf, Lee and Houk wrote that the quality of life of surgically altered patients is a “very poorly researched area”4. Preliminary data – requiring a decade or more for validation5 – cannot alter that conclusion. Indeed, the authors’ method suffers from the scientific flaw inherent in focus on surgical outcomes on infants: it precludes an ability to determine whether an affected child would want the surgery, much less know until adulthood whether the child suffers from the irreversible excision of genital and gonadal tissue.
Lee and Houk assert, nevertheless, that delaying surgery “seems to be an inappropriate form of social experimentation” because it leaves “all children with genitalia that are neither male nor female, to later decide on gender and sexuality”1. That claim should give pause to everyone concerned with these surgeries. The Working Party has already warned that this theory is a belief, unsupported by data6. But this claim is much worse than a belief: it is an unambiguous declaration of surgical bias animated by social fear – not evidence – lacking any mention whatsoever of the rights of the child.
In our view, the authors are repeating this scientific error. In 1980, Lee endorsed the feminization of boys unless their penises were “sufficient” to “stand up to urinate … and, on the social standpoint, to avoid embarrassment by others”7. Decades later, Lee and Houk confessed unapologetically that “available data” did not support that practice8. The authors know full well that feminization and other surgeries that they have endorsed were not supported by scientific data9-11. They were social experiments gone horribly wrong, euphemized today as “poor outcomes”1. In our view, the authors should direct their charge of “social experimentation” toward early infant surgery, which is far too often defended on grounds of “social emergency”12 and “social visibility”5.
Five years ago, Lee and Houk wrote that ethical principles warrant “not removing gonadal and genital tissue”, to leave options open for the patient “when possible”11. It is always possible to delay medically unnecessary surgery. If the authors truly advocate individualized care, they will ensure that care by collaborating with individual patients to allow them to determine if surgery suits their individualized gender and sexual needs.