After months of public outcry and internal investigation, Weill-Cornell Medical College has issued a response to questions raised by AIC and others about Dr. Dix Poppas’s research into genital surgery on children with intersex conditions or DSD. Dr. Poppas has been a focus of criticism for conducting clitoral reduction surgeries on young children with atypical genitals, and then following up with “clitoral sensitivity tests” on conscious girls as young as six years old.
Representatives of Cornell’s institutional review board (ethics committee) have stated that clitoral reduction surgery is part of the standard of care for treatment of these conditions, and that the clitoral sensitivity tests are “part of the evaluation of the clinical success of the surgical procedure and health of the patient.” Cornell representatives refused to answer further questions about whether future children who undergo clitoral sensitivity tests will receive the protections normally given human research subjects, or about what kind of information parents receive when making decisions about genital surgery. It seems that Cornell plans to take no further action. However, the federal Office of Human Research Protections, which initially said they did not have jurisdiction to investigate, has now begun asking more questions and is continuing their evaluation of the matter.
What is AIC’s position?
AIC believes that children with intersex conditions or DSD who are used as research subjects deserve the same protection as any other human research subjects. These protections include ethics committee oversight, informing parents that their child is being used in research, enhanced informed consent documents, and an opportunity for both parents and child to refuse to participate. When a doctor conducts tests with the intention of publishing research on the results, that is considered human subjects research – even if the tests are also related to treatment or follow up. In this case, Dr. Poppas was conducting some very unusual tests involving genital sensation in young children, apparently to support his research papers. Most surgeons who do genital surgeries on children do not do this kind of testing, because of the recognized potential for psychological harm. These children and their families deserved the protection any other child would get when participating in potentially risky research.
AIC also believes that parents of children with intersex conditions or DSD deserve complete information when they are making medical decisions for their children. We have heard from some parents who are upset that a doctor they like and trust is being criticized. Some of them point out that genital surgery is sometimes necessary. Even when genital surgery is necessary for physical health, however, parents should still receive complete information. Reducing the size of the clitoris in a child is never necessary for physical health, and there is little evidence about if or when it benefits the child in any way. The effects on long-term sexual and psychological function are still unknown. We can’t tell what parents are being told in private at Cornell, because Cornell won’t answer our questions about their informed consent process. However, their website continues to offer information that could mislead parents into believing that clitoral reduction surgery is both safe and necessary. Parents need complete and accurate information when they are making these difficult decisions.
Even well-intentioned doctors may fail to follow legal and ethical standards. AIC frequently works collaboratively with doctors and hospitals to help them understand and live up to those standards. Ultimately, though, AIC is here to protect children with intersex conditions or DSD and their families. Our goal is to be sure that children’s rights are protected and that families receive complete information.