Consensus Statement on Terminology and Management: Disorders of Sex Development

The recent consensus conference addressed several aspects of the care of patients with Disorders of Sex Development (DSD). Among these were proposals regarding a new terminology to classify patients, medical, surgical and psychological care and the decision regarding sex of rearing or gender assignment for those with the most severe forms of genital ambiguity. However, a basis was found to be lacking for the assignment of sex of rearing for many diagnoses as well as for some for whom no diagnosis could be made. Also, no consensus could be made concerning genital surgery, particularly in response to the call to defer all genital surgery until the age a child could decide. This in part involved the lack of a clear indication of the point when a person has arrived at a state of maturity enabling such a decision. However, consensus was reached that genital surgery should be performed for the infant with significant ambiguity, in spite of the lack of outcome data, when the parents unequivocally desire. It was clear that desired outcome data will not be available for decades, if ever. Also, blatantly lacking are adequate data concerning the impact of prenatal androgen on the fetal central nervous system regarding subsequent development of gender and sexual issues. Copyright (c) 2008 S. Karger AG, Basel