October 12, 2010

Letter to the Editor: Giving Parents Complete Information

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To the Editor:

Re: “Weill Medical College Says Poppas’ Surgical Procedure Is Standard” News, Oct. 5

I would like to thank The Sun for your article on Monday’s panel, “Differences or Disorders? Gender-ambiguous infants and Cornell’s role in the medical community,” in which I spoke as an expert on legal issues involving children with differences of sex development. This is an important issue that deserves wider discussion, and I appreciate your article’s careful approach to a complicated subject.

I also need to clarify a couple of points from the article. I did not state that parents should not be able to make decisions about surgery for children with disorders of sex development, although I did state that it is not clear that all such surgeries can legally be authorized by parents alone. Some may require court approval of parents’ decisions.

More importantly, I did not argue that parents are not ethically able to make decisions for their children with DSD. What I did emphasize is that children with DSD have a clear right to have an informed decision-maker, and that their parents have a clear right to full and complete information before making medical decisions. All too often, parents are not given complete information about the risks and unknowns of genital surgery before making irreversible decisions for their children. Indeed, the website for Weill Cornell Medical School continues to post potentially misleading information about the safety of these procedures. WCMC has yet to answer Advocates for Informed Choice’s questions about what kind of information parents receive when making decisions about genital surgery or about whether their child will participate in research on genital sensitivity.

Anne Tamar-Mattis, executive director, Advocates for Informed Choice