Friday, 18 June 2010

'Science speak and minifisms': hiding the horrible truth

An article on the Bioethics Forum highlighted the way that medical jargon and a 'scientific' approach can be used to obscure ethical, moral and philosophical breaches in medical interventions.

Recent attention has been paid to the issues around genital mutilation, currently focused on the suggestion taken up and rapidly dropped by the American Pediatric Association that a 'ritual nick' in a young girl's clitoris would reduce the risk of parents taking girls overseas for more debilitating tradition based cutting

However, under the guise of medicine, a paediatrician, Dr Poppas, at Cornell University, is performing nerve sparing ventral clitoroplasty on baby girls. What that means is that his surgical team is cutting the sides out of a girl's clitoris. Why are they doing this surgery? The girl's clitoris is deemed too big.

Another blogger suggests that the reason for the clitoral reduction surgery  may be more to do with homophobia than cosmetics because apparently, a woman with a large clitoris is more likely to identify as lesbian. An interesting suggestion.

Whatever the reason, the medical explanation is not in any way acceptable to any thinking person. Far from being benign and helpful, the surgical reduction of a girl's clitoris has been associated with physical, emotional, psychological and relational harm. A most disturbing and chilling aspect of this surgery is the follow up process.

The girls, aged six and over, fully conscious, have their clitorises stimulated with a vibrator by Poppas. Their parents, other researchers and probably students look on.

Alice Dreger, Professor of Clinical Medical Humanities and Bioethics at Northwestern University's Feinberg School of Medicine and Ellen Feder, Associate Professor and Acting Chair in the Department of Philosophy and Religion at American University have been arguing that the surgery performed by Poppas and his team has no benefit for the last decade. Dreger and Feder have only just become aware of the follow up process, which is described in this way:
"Using the vibrator, he also touches her on her inner thigh, her labia minora, and the introitus of her vagina, asking her to report, on a scale of 0 (no sensation) to 5 (maximum), how strongly she feels the touch. Yang, Felsen, and Poppas also report a “capillary perfusion testing,” which means a physician or nurse pushes a finger nail on the girl’s clitoris to see if the blood goes away and comes back, a sign of healthy tissue"
The article states that  "Study received medical institution review board approval".  I can only wonder how. Board approval could reflect the fact that people tend to over ride their ethical and moral compass in favour of the expert's view. Stanley Milgram provided a graphic example of that phenomenon in his research in the 1974. Researchers at Wellcome Trust Centre for Neuroimaging at UCL (University College London) in collaboration with Aarhus University in Denmark  have found activity in the reward centre in the brain shows that the opinion of other people matters and demonstrates why people change their mind to agree with someone they believe is an expert.

Milgram's experiment was repeated on a French reality TV show in March 2010. The show aimed to show how ordinary, decent people could become torturers. The outcome created an uproar.
Added to our tendency towards obedience, an illusory sense of superiority has been found to over inflate both self confidence and a sense of competence.  The Wiki page on illusory sense of superiority does a good job of bringing together a lot of the research about our ability to self evaluate and recognise our inherent biases.  There are some very good references on that page that are fascinating to follow up and explore further.

Back to our man Dr Poppas and his team. Does he/they suffer from an illusory sense of superiority and competence and because of that, posed as experts and managed to fool the board?

The webpage of the Pediatric Department at the Cornell University gives no indication that 'clitorplasty' is still contentious and criticised by both clinicians and patient advocates for the last 15 years.

The webpage states:
"The type of surgical repair performed must be tailored according to each individual patient's anatomy. The first important issue is the timing of the reconstruction. This has been a controversial area in the past, but presently the standard of care is to perform reconstructive surgery at an early age rather than delaying until adolescence. Reconstruction is generally initiated between the ages of 3 and 6 months old. An early one stage repair is recommended because female patients are able to undergo a more natural psychological and sexual development when they have a normal appearing vagina. The major features of reconstructive genitoplasty are clitorplasty, labioscrotal reduction, and vaginal exteriorization (vaginoplasty)".
The words on this web page sound so clinical, so medical, so scientific, so right. All those big words that mean nothing to most people. How would parents know anything different? Most parents believe what experts (paediatricians) say and are too intimidated to even ask questions, let alone ask for a second opinion.

Alice Dreger continues
"Yang, Felsen, and Poppas describe the girls “sensory tested” as being older than five. They are, therefore, old enough to remember being asked to lie back, be touched with the vibrator, and report on whether they can still feel sensation. They may also be able to remember their emotions and the physical sensations they experienced. Their parents’ participation may also figure in these memories. We think therefore that most reasonable people will agree with Zucker that Poppas’s techniques are “developmentally inappropriate.”
Each girl child from the time testing starts (about 5 -6 years of age) has her "thigh, her vagina, her labia minora, and her clitoris stroked with a Q-tip while she's asked if she can feel the doctor touching her. ("Can you feel me now?")"

There is doubt as to whether Poppa had/has ethics approval for the sensory testing he and his team conducted. That little detail seems to have slipped through unnoticed. 

We don't know what parents are told or not told. Talking through procedures such as Poppa promotes should take many hours of compassionate counselling and information sharing, shifting through the various ideas and schools of thought about these interventions on what appears to be variations on normal healthy genital structures. Many parents feel concerned about challenging the experts, even if the parents feel uncomfortable with a treatment that is being suggested. Parents can feel anxious about their child being victimised if they as parents 'rock the boat' and ask too many questions of health professionals.  Can you imagine what that 'sensory testing' would be like for those babies and young children and Poppa says testing is ongoing!  Poppa would prefer that the vibrators he uses to test the sensory ability of the surgically altered clitoris are referred to as a 'medical vibratory device'.  This abysmal story is full of 'minifisms' - words used to scale down the significance of the intervention. 

I'm reminded of the Butcher of Bega with this story.

Thank goodness for people like Alice Dreger and Ellen Feder who bring these abominable acts to light. Our job is to write to the authorities asking for an explanation.

Yang, Felson & Poppas (2007) Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and Viability, The Journal of Urology, Vol 178, Issue 4, pp 1598-1601 Supplement (October)

Correspondence: Institute for Pediatric Urology, Rodgers Family Professor of Pediatric Urology, New York Presbyterian Hospital, Weill Medical College of Cornell University, 525 East 68th St., Box 94, New York, NY 10021 (telephone: 212-746-5337 begin_of_the_skype_highlighting            212-746-5337      end_of_the_skype_highlighting; FAX: 212-746-8065).

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