Surgeons express concern over intersex activists' web sites
August 2001 issue of Journal of Pediatric Surgery (v.36 no.8 p.1187-9) published an analysis of internet web sites that contained information about intersex treatment. Authors Cynthia Corpron and Joseph Lelli Jr., pediatric surgeons from University of Michigan, expressed the concern that many internet sites offer "misleading information or information that did not conform to" standard surgical and treatment recommendations. According to authors, only 1.6% of web pages found through search engines offered "standard" recommendations. "Unfortunately, this information [on the internet] is not screened or regulated," Corpron and Lelli pointed out. They concluded, "parent-oriented information regarding intersex anomalies is difficult to find... Pediatric surgeons should help parents effectively use Internet information."
Just what is meant by "parent-oriented information" is unclear. Most parents search the internet because they want to meet with other parents of intersex children, read about how they have dealt with a similar situation, and find out what their intersex children's experience of medical treatments have been like - information surgeons frequently fail to provide. In that sense, perhaps ISNA.org and other intersex activist sites on the internet are exactly what these parents are looking for, even if our recommendations (as well as growing number of medical professionals' recommendations) do not conform to the traditional treatment recommendations. See here to find out how our recommendations compare to the traditional model.
Furthermore, the authors essentially criticize intersex patient-advocates for offering information that differs from what is available in texts. However, an increasing number of publications point out the unscientific nature of what has traditionally recommended in texts, and call for changes that parallel those suggested by patient-advocates. The basic philosophy of medical management of sexual ambiguity is now being re-evaluated, and it will take some years before these changes are reflected in textbooks.