Recently, two prominent physicians who treat children with intersex conditions or DSD have come under scrutiny. Dix Poppas, of Weill Cornell Medical College (WCMC) and New York Presbyterian Hospital (NYPH), has been criticized for performing genital surgery on children with atypical genitals and for questionable follow-up practices with those surgical patients, including the use of so-called “medical vibratory devices” on young children. Maria New, formerly of WCMC and now of Mt. Sinai Medical College and NYPH, has been questioned regarding her treatment with dexamethasone of pregnant women who may give birth to a child with congenital adrenal hyperplasia, in an effort to prevent a small fraction of these children from developing atypical genitals or growing up to be lesbians. Both doctors have also been criticized for possibly blurring the line between treatment and research, and many people have raised questions about whether required steps were taken to protect patients who were also research subjects.

What is AIC’s position?

AIC is here to protect the legal and human rights of children with intersex conditions or DSD and their families. We believe that doctors must provide parents with complete and unbiased information. We believe that doctors performing human research must have outside oversight, as required by law and by internationally recognized ethical standards. And we believe that doctors must be willing to answer questions about their treatment practices, especially when those treatments are controversial and elective, and even more so when they are treating children who cannot speak for themselves.

What is AIC doing?

We have heard from many people who are upset about what they have read in the mainstream press and on the blogosphere about clitoral surgery on young children, genital sensation tests on young children, prenatal treatment with steroids to prevent atypical genitals and “masculinized” behavior, and possible research involving children. We’ve also heard from several parents who are concerned about the public criticism. Some of them have taken their children to these doctors and found them to be caring and dedicated. Some parents feel that their personal decisions are being criticized by a public that doesn’t understand the situation. However, even the most caring doctors with the best intentions may fail to follow legal and ethical standards.

While we don’t have all the answers yet, AIC is deeply concerned about these reports. We are committed to act to protect the interests of the children we serve. This is what we are doing:

  • We have asked WCMC, Mt. Sinai Medical College, and NYPH to publicly disclose what kind of information they provide for parents making decisions about dexamethasone or genital surgery. We will also invite them to meet with us and other patient advocacy groups to share concerns.
  • We are serving as a resource to patient advocates and the media, providing information about the legal and ethical issues involved.
  • We are committed to following up on these investigations to see that any misconduct or institutional failures are addressed.

What can I do?

• Join AIC on Facebook and Twitter so we can keep you updated on what’s happening and how you can help.

• Write to the FDA (sample letter provided) and the OHRP (sample letter provided), encouraging them to investigate.

• Educate yourself about intersex conditions and DSD, and spread the word.

• If you are concerned that your rights or your child’s rights may have been violated, contact AIC.

• If you are a lawyer or law student, contact AIC to volunteer!

• Support AIC’s work by donating!