Here’s a story that didn’t quite fit where i pitched it first time round….so, when in doubt…publish:
“Is it ethical for a doctor to stimulate little girls’ clitorises? That is the startling question being asked this week by Alice Dreger, Professor of Medical Humanities and Bioethics at Northwestern University in Chicago, on discovering that one leading New York clinician has been doing just that – to test for sexual function following surgery to correct “masculinised” genitals.”
The issue came to light as Professors Dreger and Feder investigated how medical professionals deal with a condition known as CAH (congenital adrenal hyperplasia). This can lead to a number of effects, including abnormal or enlarged genital development in women.
While the condition itself can have serious consequences for health, enlarged genitals, with no further complications, do not necessarily create a health risk.
The academics’ first encounter with these issues was in respect of the administration of a steroid – dexamethasone (“dex”) – to pregnant mothers at risk of carrying babies with CAH. This is an attempt to prevent female fetuses from developing genitals that are more in-between the male and female types. According to fetaldex.org, a web-site set up by Prof Dreger, it may also be the view of some clinicians that the aim of administering this drug is to prevent female fetuses from being psychologically “masculinised”.
She cites the leading advocate of administering “dex” during pregnancy, Maria New (then also of Weill Medical College of Cornell University), as telling parents: “the challenge here is […] to see what could be done to restore this baby to the normal female appearance which would be compatible with her parents presenting her as a girl, with her eventually becoming somebody’s wife, and having normal sexual development, and becoming a mother.”
Professors Dreger and Feder then discovered a paper, published in 2007, by Professor Dix Poppas, of Cornell Weill Hospital New York and Dr Jennifer Yang. This described tests carried out following clitoral surgery to determine whether the subjects – girls with an average age of just 6 and a half – had suffered any significant loss of sexual function.
The paper reported: girls “older than 5 years were evaluated for clitoral sensory testing and vibratory sensory testing”. That is, a cotton tip applicator was applied to “various points of the inner thigh and genitalia (labia majora, labia minora, vaginal introitus and clitoris)”. Patients were then asked to rate the degree of sensation on a five-point scale. The paper further reported “vibratory sensory testing performed using a biothesiometer”. These are not, apparently, vibrators in the conventional sense but, allegedly described elsewhere by Prof Poppas as “medical vibratory devices”.
There are problems of consent and damage in relation to both the surgical procedure and the subsequent testing. In general, surgical intervention is not advised, unless in respect of a direct risk to health. That view may be compromised in cases of CAH either by direct homophobia (fear that a girl will turn out lesbian) – or proxy homophobia (fear that parents’ fears will affect a girl’s psychosocial development).
Where surgery is considered, then, according to Anne Tamar-Mattis, Executive Director of Advocates for Informed Choice, (AIC) ideally these decisions should be left to the child. She added: “if parents and doctors are going to make decisions on behalf of the child, they should have complete information.
“Too often, medical practitioners tend to minimise risks and play up the consequences of not following medical advice. Some doctors even pressure parents.”
In respect of the follow-up testing, both AIC and Professors Dreger and Feder are seriously concerned about the ethics of what was done. Again, according to Anne Tamar-Mattis: “Where a medical procedure is involved, parental consent can often over-rule that of a child: where a procedure is being carried out solely for research purposes, any child has the right to refuse to participate as soon as they are old enough to say no.”
The two professors also questioned the ethics of the testing. Research of this kind should be subject to an institutional review board: Dreger and Feder suggest that clearance for the full test procedure was never obtained: only a technical permission to analyse test data after it had been obtained.
They also argue that not only is the original procedure (which removes the shaft of the clitoris and preserves the glans) mis-directed: there are also strong grounds for considering the post-op testing itself to be intrusive and psychologically damaging.
We asked the Weill Children’s Hospital to comment on these matters: at time of writing, they have declined to do so.
At the end of the day, this affair throws some wholesome light on a corner of medical practice that many would consider has been allowed to build its own empire, unquestioned, for far too long. The American Academy of Pediatrics has recently stated its opposition to all forms of female genital cutting, whilst continuing to offer tacit support for surgical procedures that many would consider are themselves based in archaic and homophobic models of sexuality.
Surgeons who advocate techniques of this sort are, ironically, quite proud of treating “masculinisation” without having to remove the clitoris entirely. The medical PR focuses on “normalisation” and girls being able to enjoy a “normal” sex life – although one surgeon quoted by Dreger clearly has little or no idea as to how women achieve sexual satisfaction.
The research takes place against a backdrop of criticism from intersex activists, that surgeons carry out medical procedutre with little or no thought for the human outcome. It is possible to argue that in this instance, the research, however flawed, represents a real attempt by the medical profession to come to terms with these criticisms.
The difficulty, however, as Anne Tamar-Mattis suggests is that when it comes to issues of this sort, we have to be sure the research itself is ethical. Yet it is difficult – maybe impossible – to ethically conduct research into the sexual function of children’s bodies.