Bioethics Discussion Blog: Clitoral Sensitivity Study in Children: A Question of Ethics

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Monday, July 12, 2010

Clitoral Sensitivity Study in Children: A Question of Ethics

The abstract presented for a paper by Yang, Felsen and Poppas “Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and Viability” in the October 2007 Journal of Urology sounds rather cut and dry:


“Purpose Enlargement of the clitoris is often a prominent manifestation of virilizing congenital adrenal hyperplasia and other disorders of sexual development. Controversy persists regarding the viability and sensitivity of the clitoris following clitoroplasty. We present 51 consecutive cases of nerve sparing ventral clitoroplasty performed by a single surgeon. Materials and Methods Nerve sparing ventral clitoroplasty was performed in all patients. Postoperative evaluation for clitoral viability included gross examination and capillary perfusion testing. Patients older than 5 years were evaluated for clitoral sensory testing and vibratory sensory testing. Results A total of 51 patients 4 months to 24 years old (mean age ± SD 4.6 ± 6.8 years) with clitorimegaly underwent nerve sparing ventral clitoroplasty. Of the patients 41 had capillary perfusion testing of the clitoris, of whom all had a viable clitoris. Ten of the 41 patients underwent clitoral sensory testing. Patients reported an average degree of sensation of 3.6 ± 0.9 at the labia minora and 4.8 ± 0.4 at the clitoris. Nine of the 10 patients also underwent vibratory sensory testing. Average values for the introitus, clitoris, labia and thigh were 3.56, 1.61, 5.08, and 5.83, respectively. Mean time after surgery for the patients who underwent clitoral sensory testing/vibratory sensory testing was 2.0 ± 0.8 years. No variations in the sensitivity results were reported at followup in 2 patients. Conclusions To our knowledge this is the largest report of followup testing of clitoral viability and sensation after clitoroplasty. Continued long-term followup is ongoing to document long-term sexual function using this nerve sparing ventral approach for clitoroplasty. “

And ends with “study received medical institution review board approval.”

However, ethicists Alice Dreger and Ellen K. Feder writing “Bad Vibrations” 6-16-2010 in the on-line Hastings Center Bioethics Forum consider along with others including surgeons surgery to reduce the size of a large clitoris as medically unnecessary but their main concern with the study was expressed as follows:

“we are writing to express our shock and concern over the follow-up examination techniques described in up exams – which involve Poppas stimulating the girls’ clitorises with vibrators while the girls, aged six and older, are conscious – we were so stunned that we did not believe it until we looked up his publications ourselves. Here more specifically is, apparently, what is happening: At annual visits after the surgery, while a parent watches, Poppas touches the daughter’s surgically shortened clitoris with a cotton-tip applicator and/or with a “vibratory device,” and the girl is asked to report to Poppas how strongly she feels him touching her clitoris. 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. Poppas has indicated in this article and elsewhere that ideally he seeks to conduct annual exams with these girls. He intends to chart the development of their sexual sensation over time.”


The ethicists concerns was not that this genital testing would provide general knowledge about sensory complications of the specific surgical technique but “but it isn’t clear to us how this kind of genital touching post-operatively is in individual patients’ best interests.” So it appears that the view presented is that the surgery is unnecessary in the first place and the repeated post-operative testing is not for the benefit of the patients. What may set this study apart from studies regarding sensation over other parts of the body? Is it because one might look at the testing as a potentially sexual experience for an innocent girl and potentially psychologically harmful? Is such a study ethical? Read the full Bioethics Forum commentary at the link above and let me know if you consider that the authors’ view hold merit. ..Maurice.

17 Comments:

At Tuesday, July 13, 2010 9:30:00 AM, Blogger Hexanchus said...

Dr. Bernstein,

I concur with Dreger, et al, and I find this truly appalling!

Clearly the post operative sensitivity testing exams are for Poppas' benefit and not that of the patient.

The IRB approval was for the review of the data, not the post-op sensitivity testing. As was pointed out, Dr. Poppas was conducting research without IRB review, which is highly unethical.

 
At Tuesday, July 13, 2010 1:13:00 PM, Blogger Maurice Bernstein, M.D. said...

When I read the commentary in the Hastings Bioethics Forum, I thought that this would be an worthy issue to consider by those of my visitors who have been reading and participating on the Patient Modesty volumes. Is what is going on with Poppas's followup "study" more than just a modesty issue for the little girls? Since most of the girls could not give informed consent and only some may have been old enough to give non-binding assent or dissent, what was the rationale the parent-surrogates could provide for giving consent to the followup procedure on their child? Do you think that their consent was an automatic followup reaction to the consent they gave to have the clitoris trimming procedure done on their daughter in the first place? I think a sociologic study on the thinking of the parents in this regard would be of great value and of importance in perhaps setting moral/ethical if not legal limits to the powers of a parent-surrogate. What do you think? ..Maurice.

 
At Tuesday, July 13, 2010 8:22:00 PM, Blogger Maurice Bernstein, M.D. said...

I created a link to this thread from my Patient Modesty Volume 35 thread and I got the following response today by gd to the issue:


"The realm of experience has to be examined by both doctor and patient. While this Poppas person may feel that this work has merit, from the patient perspective this is the sexual humiliation of children in front of others and will damage them for life.

This guy is a pervert and should be charged with sex crimes hiding behind his white coat.

I wonder how he would feel if someone pulled his pants down and stimulated in front of his family?
I rest my case
gd"

I responded:

"I don't intend to defend Dr.Poppas but I wonder if it is premature to call him a "pervert". Isn't perversion a psychologic term for a sexual practice or act considered abnormal or deviant? Can the term pervert be applied to an individual for a first time behavior carried out as part of a study of practical significance and without any knowledge about the individual's prior sexual proclivities? What I am trying to say is whether branding him a pervert is a bit premature without knowing a prior history. I am willing to listen to arguments against my cautionary comment. ..Maurice."

 
At Tuesday, July 13, 2010 8:32:00 PM, Blogger Maurice Bernstein, M.D. said...

Here is a comment from Anonymous today on the Patient Modesty thread. ..Maurice



"If it was done once by one method after the surgery with parental consent in regards to the young ones I could understand. Where teens and the older patients are concerned they could be told how to do it themselves and simply report their findings. I understand the surgeon wanting to make sure the procedure was successful.

One exam should be sufficient here. If the children as they grow up or the older patients have an issue they could report it to this doctor or their gynecologist. I'm very uncomfortable with this being done every year to check on their sexual response level. After the surgery is deemed successful it crosses the line to continue to check with no perceived problems. Do you really want your 6,7, 8, 9, 10, 1l and onward child checked in this matter every single year? Wouldn't be done to my child. "

 
At Wednesday, July 14, 2010 4:22:00 PM, Blogger Maurice Bernstein, M.D. said...

Wednesday, July 14, 2010 3:56:00 PM, swf said...
Traditionally measuring scales of anything ranging from pain to pleasure are based on known experiences. From 1-10....10 being based on the most you've ever felt etc. etc. How could a little girl possibly give a range based on anything comparitive unless they did a before and after stimulation?
(Which may have it's own set of concerns here!) These test would only prove she still maintains a degree of sensitivity. Same as before? Enough to justify the operation? Should the minor decide for herself how big is too big and have surgery accordingly?
Should parents be able to speak for their own preferred size?

 
At Wednesday, July 14, 2010 4:35:00 PM, Blogger Maurice Bernstein, M.D. said...

swf, I think that the quantization of the sensations (actually in the report: 0 to 5) is the one of the most worrisome aspects of the value of the followup examinations. Certainly it can't be the parent surrogates who make the needed mature judgment of the intensity of the sensation. What documentation is there in the literature or in Poppas preliminary studies to validate the significance of the subjective responses by the children. If the validity of their responses has not been previously established then the responses would be either "absent sensation vs present" at best. This would put the value and method of the followups under question and indeed whether any potential value is worth the potential emotional harm.
Wouldn't it be more scientific and ethical just to wait for the children patients to complain about symptoms later in their development? Just my thoughts. ..Maurice.

 
At Thursday, July 15, 2010 10:19:00 AM, Blogger Maurice Bernstein, M.D. said...

Mark B wrote the following today. ..Maurice.

"I agree. I just can't believe there is scientific value added by yearly check ups of this manner. The risk of psychological harm to the patient is also way too high to justify."

 
At Friday, July 16, 2010 12:02:00 AM, Anonymous Anonymous said...

I totally agree with the psycological devastating long lasting effects of all of this. From the patients point of view you are being sexually humiliated in front of an audience.

Again there is no doubt in my mind the parent viewing is meant to "calm" the child but who in the world wants a memory of basically being sexually stimulated by a doctor,a nurse , 2 medical students and mom and dad two feet away.

I won't go into the wholse story but my humiliating medical experience happened as a teen/minor and it's like you have no say once again about what's being done to your body,who is viewing you and why......it's absolutely devastating.

I agree I would love to see a study done on these parents. Perhaps they simply trusted the doctor and he gave them some medical mumbo jumbo that led them to believe in was in the best interest of the child.....I believe the parents may very well think they are doing the right thing but can you imagine the humiliation of what the patient is going through..........

 
At Friday, July 16, 2010 3:53:00 AM, Anonymous Anonymous said...

I would love there to be a study of these medical professionals who are making a perversion out of medical science. What is wrong with them that they cannot understand that the trauma from these experiences will ruin lives much in the same way torture and rape.

Authority figures took away their free will to object, subjected them to psychological torture. Let's call it what it is.

 
At Friday, July 16, 2010 7:17:00 AM, Blogger swf said...

Let's not let the parents off the hook too easily! Perhaps they believed correcting the "problem" was in the child's best interest, but yearly stimulation? When does blindly trusting someone stop and thinking on your own start?
Seriously, parents need to use some common sense. If it feels or looks like a bad idea then think again....and again.
If this guy is doing something wrong to children, the parents are letting him. Between the doctor and the idiot parents these children don't have a chance......

 
At Sunday, July 18, 2010 6:51:00 AM, Anonymous medrecgal said...

This just strikes me as all sorts of wrong ethically, from both that physician's perspective and the parents' as well. While it might be acceptable to test it ONCE to see if there's any sensitivity remaining after the procedure, beyond that is uncalled for and potentially quite traumatizing for the patients.

As for the procedure itself, I am in complete concurrence with the commenter who said that it would be best to not even do these procedures to minor girls in the first place, instead letting the patients decide for themselves whether their "enlarged" clitori need to be fixed. Most of the time it's purely a cosmetic procedure designed to appease parents and make the child fit a societal standard, rather than a medically necessary one. That's really the underlying problem. I say hands off unless the person asks about the procedure herself or the enlargement is causing some kind of legitimate physical problem. So that would address the other issue, as well: if you don't do a corrective procedure, you won't need to see if it "worked" by repeated testing. This one just hit my "ick" sensor about 3 sentences in. This is a case of just say NO...and that review board needs an examination of its own ethics, apparently!

 
At Tuesday, July 27, 2010 10:53:00 AM, Anonymous Suze said...

Well, as a woman who was traumatized by an exam much less involved than this at age 5 ... I say WTF is wrong with the medical profession that there is SO much concern about the genitalia of small children?

Certainly in very early infancy any major problems would be known (during the diaper wearing phase). And the parent could ask a doctor about it then.

After that point, LEAVE them alone.

There is no need to poke, prod or 'measure the development' of any child. AGAIN, if there is a problem it WILL come up.

Kids see other kids parts and ask questions. If your kid comes to you and asks why they are 'different' then certainly a trip to a doctor to have 'normal' explained might be in order.

How these parents decided their daughters clitorus was 'too large' is a big concern for me in this issue. I seriously suspect that it was a doctor that started this whole thing by telling the parents that their child was 'abnormally developing'.

So what if you little boys penis is considered larger than 'normal' in infancy? Do ya shorten it? Certainly not, since most likely the doc would never say he was abnormal, rather he'd say 'quite the little man you got here' or some other euphemism.

Unless the girl can't wear normal clothing due to it being grossly oversized - LEAVE it alone.

Certainly if you as an adult would NOT allow a doctor to do it to you, why would you allow them to do it to your kid? Would the moms be okay that the doctor might want to see if the problem is inherited so he needs to check their 'sensitivities' as well?

Why can't people THINK before they allow or plan such 'interventions'?
Certainly these girls may have been happy with their parts just as they were, who knows what they would have grown into?

Like in circumcision, it should be the choice of the one being cut on ... not the parents, not society, and certainly NOT the doctor.

 
At Sunday, August 08, 2010 8:06:00 PM, Anonymous Anonymous said...

Suze, we've discussed this obsession on Unnecessary pap smears and couldn't agree with you more.

This is the apotheosis of the desperate need for doctors to get out of people's pants and sex lives, beginning with birth: infant circumcision, breaking infant hymens. If doctors didn't feel so entitled to do surveillance on a child's genitals, would any of this have happened in the first place? In a free country why should abnormal genitalia bother anyone but their owners. From what I have read and seen of intersex folks (just trying to think of a reason that doctors can't get their noses out of children's privates) they are deeply resentful of their lack of privacy/bodily autonomy and are desperate to be left alone.
Western medicine has worked long and hard to chip away traditional mores and destroy privacy esp. within children and families. Worst of all it is the parents who try to protect them from such psychologically damaging invasions whose hands are tied and held suspect.

I remember this blog's beginning as a dr. trying to undesrtand the then hidden rage of patient's against dr.s. And I was grateful for that. Well I can't think of a better source than this horror story. I try to stay healthy and know my own body so I will never ever be at the mercy of dr. Even in death. Check out this story on what has happened to those who donate their bodies to science.
http://www.smh.com.au/news/national/cadaver-abuse-unsw-apologises/2007/02/06/1170524072141.html

 
At Sunday, August 08, 2010 8:15:00 PM, Anonymous Anonymous said...

"Certainly if you as an adult would NOT allow a doctor to do it to you, why would you allow them to do it to your kid? Would the moms be okay that the doctor might want to see if the problem is inherited so he needs to check their 'sensitivities' as well"?

Never understate American women's readiness to get naked and spread for any man in a white coat. The feminists really dropped the ball on that one. Moreover, remember Victorian vibrator therapy for "hysteria"? You wonder what it would take for women to take their bodies back.

 
At Friday, November 19, 2010 12:48:00 PM, Anonymous Anonymous said...

Horrible. I would imagine this practice would scratch the same painful things onto a child's soul that we worry about with forensic examinations during child custody disputes. While the later is necessary at times, WT holly F with the former? I struggle to believe this is actually happening at all. I doubt it. I pretty much just know it isn't, yet I don't care and want to comment/shout... IT WOULD BE HARMFUL.

 
At Saturday, November 19, 2011 1:56:00 AM, Anonymous Anonymous said...

Why on earth shud medical doctors be dipping their fingers into little girls vaginas all in the name of clitoral examination? Dont they have wives at home? If a little girl's clitoris is large,is God not a God of variety? Is dr. A penis and dr.B penis thesame? Or dont they know that these little children are getting some sexual psychological catastrophies or affectations? Are the children complaining of sickness in their body? To you parents allowing that,GOD will hold you responsible for sexual destructions you are laying on your children. Why don't you mothers give out your vaginas to those doctors to be examining your clitorises right in front of your husbands,if your husbands wont raise an invisible cutlass to matchet your heads and those doctors heads?Now, here's the warning! REPENT and do things right in the Name of JESUS CHRIST, or else you 'll receive the greatest punishment God has to give. Hear you doctors and parents. Thank you.

 
At Sunday, December 18, 2011 2:28:00 PM, Anonymous Anonymous said...

no Words! im so Shock!!!! i just cant believe this... there is so much perversion in this profession, every day becomes more evident...

and probably they have a thousand justifications for those studies that "ordinary humans" can not understand...

fucking Perverts!

 

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