The Cause For Concern

The internet has been buzzing with much disquiet – in fact, even fury – at the way some young girls are being followed up postoperatively at the pediatric urology department at Cornell University, New York. What is being called into question is the ethics of the postoperative follow-up testing.

The Surgical Operation

The girls had been born with congenital adrenal hyperplasia, a hormonal disorder that causes enlargement of the external genitalia, which can, depending on the degree of enlargement, cause confusion as to whether the child is a boy or girl. In some cases, the girls undergo surgery, called clitoroplasty, to re-fashion (mainly to reduce the size of) the clitoris. Whether surgery is done or not is very much down to judgment in individual cases by the surgeon and the parents. As CARES ( Congenital Adrenal Hyperplasia Reseach Education and Support) Foundation, a self-help group for people needing help with congenital adrenal hyperplasia points out, there is no “right decision”. Some parents are worried that children could be psychologically affected by having abnormal genitalia. Other people question the necessity, safety, and efficacy of the operation.

Older techniques of clitoroplasty used to cause loss of sexual sensation. The newer technique that Dix Poppas, chief of pediatric urology at Cornell, is said to preserve nerve function (and hence sexual sensation).

The Annual Postoperative Follow-Ups

One of the tests that Dix Poppas uses is to check the circulation of the clitoris, to test whether the area operated on remains heathy.

The other follow-up test he uses is the controversial one. It is the clitoral sensory test, which he does on girls over the age of 5. Here he applies a cotton-tipped applicator and/or  “vibrator” to the clitoris, and the vibrator  to the various parts of the external genitalia and inner side of the girl’s thigh, and asks her to grade on a scale of  0 to 5 the degree of sensation she feels for each part.

The Research Paper

When Alice Dreger, professor of medical humanities and bioethics at Northewestern University’s Feinberg School of Medicine in Chicago, and Ellen F Feder, chairman of the department of philosophy and religion, College of Arts, American University, Washington DC, heard about this practice from a colleague, they were so stunned that they did not believe it, until they read a research paper by Dix Poppas and his colleagues describing the practice that was published in 2007 in the Journal of Urology. Writing in the Hasting Center’s Bioethics Forum, Alice Dreger and Ellen Feder point out that the girls undergoing the clitoral sensory test are at an age when they would be able to recall the whole procedure and the sensations they felt during the test.

Acceptability Of Clitoral Sensory Test?

When challenged about the practice by Ellen Feder, Dix Poppas replied that the test was conducted in the presence of a family member.

Alice Dreger and Ellen Feder were unable to find clinicians who approved of Dix Poppas’ practice. In fact, most clinicians they spoke to thought their description so outrageous that they disbelieved Alice Dreger and Ellen Feder until they were shown the 2007 research article, and then their reaction turned to agitation. Ken Zucker, a psychologist at the Hospital for Sick Children in Toronto and “member of the clinical establishment”, said that he was happy to be quoted as saying “Applying a vibrator to a 6-year-old girl’s surgically feminized clitoris is developmentally inappropriate”. Alice Dreger and Ellen Feder could not find any clinician who disagreed with this statement.

Questions About The Ethics Of Dix Poppas’ Practice

Can the follow-up tests be justified by viewing them as means of confirming whether the surgical technique that Dix Poppas is using will be useful for treating congenital adrenal hyperplasia? Alice Dreger and Ellen Feder point out that Dix Poppas has no control group – ie, a comparison group of girls who are normal or who have not undergone surgery – against which to compare the findings on preservation of sensation, and that he is unlikely ever to get a control group because no sane parent is likely to allow a child to be a control for this kind of test. Another problem is that there is no way of knowing how the girl’s sensations at this young age will reflect what they will be as adults. Yet another problem is uncertainty about how the tests that Dix Poppas is conducting will affect their psychosocial development.

Ethics Approval

The 2007 paper said that the research had been approved by an Institutional Review Board, the committee that must approve the ethics of a piece of research before the work can proceed. However, Alice Dreger’s and Ellen Feder’s interpretation of the research article is that approval was given only for review of case-notes but not for the postoperative sensory testing.

Think about It?

How well informed are parents before they give consent for surgery on their children? Do they just accept what the doctor says, or do they ask or read around more widely? Are they given enough help to make informed choices? Is it easy for doctors to push through their own preferences as to treatment? When concerns arise about a certain practice within an institution, what should that institution do? When doctors are very uneasy about the practice of one of their peers, what should they do? How closely is the ethics of a research project monitored after it has been granted ethics approval?

One Thought on “Is There A Serious Breach Of Medical Ethics?

  1. cahproudwoman on July 16, 2010 at 1:35 AM said:

    Having grown up with this disease and spent much of my life dealing with the physical effects of older surgical techniques, I am glad Dr. Poppas is trying to help make it better. First of all, despite my less than perfect surgery, I am glad my parents chose to have surgery for me when I was a baby. I don’t remember it and am glad I did not have to grow up with ambiguous genitals. I had a fairly normal life (except for the CAH) and can only imagine how bad my self esteem might have been and how different I would have felt had I grown up without surgical correction. I have asked my parents about how they made the decision about the surgery for me and they told me they struggled with the decision (they were not told to do it by a doctor).
    Secondly, in the US, parents are in the room with all physical exams of the child (I work in the health care field), so wouldn’t the parents have stopped the test if they felt uncomfortable with it? The test does sound weird, but how else can they test the surgical area without touching it. He is a urologist after all and must touch genitals. That is his job. We may feel uncomfortable with it because he is touching children’s genitals, but that is what he is supposed to do.
    I don’t know who this Alice Dreger or Ellen Feder are. They don’t speak for me. I don’t think they have CAH–why are they in our business anyway?

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