Weill Cornell Medical College released a statement on Monday affirming that the surgical and post-surgical treatment of young girls who have “ambiguous genitalia,” described in a 2007 Journal of Urology article by Dr. Dix P. Poppas, is standard clinical procedure. The statement was released after WCMC conducted an internal investigation, which began on June 17, in response to “numerous inquiries from alumni and others,” the statement said. Poppas’ procedures sparked controversy and widespread debate on the blogosphere this summer.
Also on Monday, intersex experts, advocates and representatives from WCMC gathered in Goldwin Smith Hall for a panel discussion entitled “Differences or Disorders?: Gender-ambiguous infants and Cornell’s role in the medical community.” The panel discussed Poppas’ work and its place in a larger conversation about the intersex community — people who are born with reproductive or physical anatomy that does not fit into typical male or female categories — and disorders of sex development.
“I was alarmed when I read Poppas’ studies,” said Anne Tamar-Mattis, an attorney and founder of Advocates for Informed Choice, a group that provides legal support to families and intersex adults.
Specifically, Tamar-Mattis and other critics said they were upset with the controversial follow-up procedures Poppas conducts after young females undergo clitoroplasties, the surgical shortening of clitorises that appear to be larger than normal.
After performing clitoroplasties, Poppas meets with patients, who can be as young as six-years-old, to test if they retain sensation post-surgery.
With their parents in the room, Poppas uses a Q-tip or vibratory device to stimulate the inner thigh, outer and inner labia and clitoris of the patients. He then asks them to report how they feel on a scale of one to five. In addition, Poppas performs papillary profusion tests, where he presses down on the clitoris until it turns white and measures how long the blood takes to return. According to his articles, these follow-up procedures are intended to occur annually.
At the panel, Dr. Ralph Nachman, professor of medicine and associate dean of clinical research at WCMC, confirmed that the follow-up procedures Tamar-Mattis described were true.
“As far as [Advocates for Informed Consent] can tell, no one else does these follow-up procedures,” Tamar-Mattis said. “A lot of doctors who treat intersex conditions could not believe it — we had to pull out [Poppas’] published papers. They were horrified.”
When asked about his opinion regarding the controversial follow-up procedures, Nachman said, “If Poppas told me over a cup of coffee, I would say, ‘that’s absurd!’ But once I heard all about his study, I realized it is a standard clinical procedure.”
Tamar-Mattis’ and AIC’s public complaints, however, result from uncertainty around whether Poppas received Institutional Review Board approval to perform clitoroplasties and the follow-up research. The Institutional Review Board is an independent research ethics review service, which Tamar-Mattis said would ensure that parents of intersex children were fully informed before making any decisions.
But Nachman said that Poppas received “complete IRB approval for research” and that the follow-up procedures to the clitoroplasty “do not fall under the IRB.”
“I know Cornell students are very interested in what’s being done in their institution, but I must stress that this is a much larger issue than the individuals [at WCMC],” said Carla Golden, professor of psychology and women’s studies at Ithaca College and the moderator of the panel.
At the beginning of the discussion on Monday, Golden reminded the audience: “We are not talking about medically necessary surgery today. The concern is more about elective services that are not medically necessary.”
In addition to Poppas’ work, panelists discussed the issue of informed consent, parents’ rights and abilities to make medical decisions for their intersex children, and cultural perceptions of normalcy that affect intersex people.
Of the various types of disorders of sex development, the panelists referred mainly to congenital adrenal hyperplasia, the most prevalent cause of intersex among people with XX chromosomes. CAH is the most common cause of clitoromegaly, the condition where a female has a larger-than-expected clitoris.
Janet Green, a patient advocate representative on Accord Alliance’s board, shared her experience as a patient with CAH.
“I was told I was the only one in the world who had this body,” Green said. “I felt like a purple person in a very white world.”
All of the panelists, with the exception of Nachman, the WCMC professor, agreed that parents should not be able to decide whether or not their intersex child undergoes surgery. In most cases, parents must make these decisions within the first months of their child’s birth, according to Tamar-Mattis.
Tamar-Mattis expressed concern that she meets many parents who do not receive sufficient information about the controversies surrounding and potential negative effects of clitoroplasties. Of these effects, clitoroplasties can inhibit a girl’s ability to reproduce and experience sexual pleasure later in her life. Tamar-Mattis does not think ignorance is specific to parents: she believes doctors are not psychologically trained to counsel parents faced with such decisions.
Ultimately, Tamar-Mattis argues that parents are not ethically able to be surrogate decision makers for their intersex infants.
In her personal story, Green describes some of the two main reasons parents elect to have their child go through surgery: a desire to protect their children from being different and a fear of their own limitations to loving an “abnormal” child.
Alternately, Green believes that society needs to embrace the option of not undergoing surgery. She reminded the audience that there is no rush to these cosmetic surgeries, and that oftentimes, they produce unexpected results.
“I can tell you that my body and the bodies of people who have undergone surgeries do not look anything like the bodies doctors were trying to promote, that they were saying were normal,” Green said.
Emily Feder, a philosophy professor at American University and member of the Intersex Society of Northern America Advisory Board, echoed Green’s sentiment. Over the years, there has been change in the ways doctors respond to intersex children. For example, the medical community no longer practices vaginal dilation before puberty, because parents felt uncomfortable performing regular dilation on their daughters and reciprocally, the young girls felt violated.
“We do not have evidence yet on the great harm that Poppas’s procedures has done,” Feder said. “But [the group of young girls undergoing the procedures] may later provide the evidence that results in change.”
Original Author: Margo Cohen Ristorucci