Because this needs to be said...

[mijan]

I'm sure quite a few of you have already seen the rants on your f-lists.  No, not the SPN fanfic stuff.  I'm talking about the total uproar some people are making over the ALLEGED "female genital mutilation" taking place at Cornell University. 

Personally, I find it mind-boggling how many people are ONLY reading the ranty, non-scientific, highly-biased, slant-angled BLOG POSTS about this, and not reading the goddamned MEDICAL RESEARCH PAPER to see what was actually done!  I've seen rant after rant linking to blog-post after blog-post like a line of dominos, but nobody is referencing the actual research paper.  Nobody is linking it!  Everyone is just screaming their heads off without even going back to the actual research paper.

Fandom, I'm disappointed in you.  For all that so many of you are well-read individuals who seem willing to dig up source material, you're awfully quick to jump on the bandwagon and scream bloody murder about this.  I'd guess that some of the people ranting don't have enough of a biomedical background to understand the research paper anyway, but for those of you who are able to untangle the med-speak, you owe it to yourself to read the actual source material.

READ IT:  The actual published research paper.  Until you read it, with comprehension, shut up.  And stop "boosting the signal" of something you don't even understand.  That makes you no better than Tea Partiers parroting Glenn Beck.

I have seen people call this research the following things:
Female genital mutilation, rape, sex abuse, child abuse, homophobia, trauma, sexual assault, and even torture.

To those of you who have BLINDLY SWALLOWED THIS LOAD OF BULLSHIT, how about doing some research before you jump to conclusions?  Otherwise, you're blindly following propaganda, which is a bad thing, whether it's conservative or liberal propaganda.  So let's dig into the issue a little bit, shall we?

Do you people know what this research is actually about?  Do you UNDERSTAND that this procedure is NOT being done on "healthy little girls" whose only "problem" is that they have big clitorises?  Do you understand what Congenital Adrenal Hyperplasia is?  (Probably not, so go here and read up before you say anything else.)  Can you please wrap your heads around the idea that this is NOT about "slightly larger-than-normal" clits.  These are girls whose clitorises are big enough AND MISSHAPEN so that they look like penises, and the REST of their genitals are also malformed.  Labia may be fused together, blocking the opening to the vagina.  Or they could be engorged, resembling testicle sacs.  The entire genital structure is morphed, somewhere between male and female.  Milder cases might not have any long-term problems, but for others, you're talking about a possible lifetime of sexual anguish and dysfunction. 

In the paper, it mentions the lengths of these penis-like clitorises.  The lengths don't seem very long, until you realize that these are the non-erect lengths of the PROTRUDING portion of the phallus on very small children, and some are almost equivalent to the penis lengths of boys that size.

The kids who are born with this condition start off in severely poor health due to endocrine system problems, and THOSE issues are treated immediately after birth.  (Those problems can be life-threatening.)  After the initial medical treatment for the life-threatening issues, parents decide how to proceed with the other issues based on the severity of malformation.  Again, these are not "big clits."  Go ahead and look up some pictures of people with this medical condition.  Go on, do it.  THAT'S what we're talking about here.

People should note that two of the researchers listed as authors of this research paper are women.  Let's talk hypothetical for a moment.  Maybe one of them was born with congenital adrenal hyperplasia.  Maybe she grew up with severe self-identity issues because she was a "girl with a penis" until finally having plastic surgery as a teenager, and then because of archaic surgical techniques, she was left with a clitoris that had almost no sensitivity.  Maybe this is her chance to spare these girls from that fate.  Consider that possibility.  Just... chew on it for a while.

Oh!  Almost forgot the male doctor who is being so horribly demonized as a rapist and child molester.  Let's give a hypothetical example for him.  Maybe his sister had this condition.  Maybe his mother had this condition.  Maybe his WIFE had this condition!  Maybe one of them was subjected to a more archaic procedure that left them with nerve damage.  Perhaps he has his own personal reasons that run very dear to his heart, and he's seriously trying to help these girls.  Did any of you even start to consider those possibilities?  I know that in medical research, a lot of people fall into certain fields by chance, but a lot of other researchers try to find cures and treatments for diseases that have impacted themselves or someone they love.  Did you consider that?  Maybe you should before blindly demonizing this guy.

Now, as for the "stimulation" part of this study... the age RANGE for this part was 6 to 24.  My guess is that most of the patients were in the older part of that range, but regardless, here are a couple of points to note:
1. This is not something where the doctors use a "toy" vibrator and stimulate the girl to arousal.  It's a small probe (the same type used to test neuropathy and other nerve damage issues), and the length of contact is more "Can you feel that?  Okay."
2.  HOWEVER, I don't think this was a good idea for a study anyway.  A verbal survey of the girls who are at least teenagers ("Are you satisfied with your level of sensitivity?) should be sufficient, and then, if the girls OVER the age of 18 wanted to volunteer for testing, then they can volunteer themselves.
3. Still, I wouldn't call this rape, sex abuse, or any of those other accusations I've seen tossed around.  Yes, the ethics committee should have screened this study more carefully, and no, I don't think the stimulation portion was necessary, but it's NOT RAPE.

Next medical issue:  Capillary refill testing.  Do you know what capillary refill testing is?  Try this: Press down on one of your fingernails for a couple of seconds (not very hard) and then remove the pressure.  Watch how the tissue underneath the nail changes color as blood refills the capillaries.  The amount of time the refill takes indicates HEALTHY CIRCULATION.  After any sort of surgery, it's an important test to make sure that a person is getting enough blood flow.  It can be performed on any part of the body, not just the fingernail.  It's painless.  It's quick.  It's not sexual assault.

Okay, what about you folks who are set on the idea that parents and doctors should wait until these kids are 18 years old before letting them get the surgery?  I can understand that philosophy.  I can also understand that some people would argue that if they fix it before the kids are old enough to remember, it spares them the psychological trauma.  Those arguments will go back and forth endlessly, and I'm not going to get involved in that one. 

Yes, some people who are physically intersex have embraced their identities.  Some people who have ambiguous genitalia decide not to get cosmetic surgery as adults.  And some of them grow up not really sure who they are.  Some of them have severe body image issues.  I say this as a queer person; I don't identify as either gender.   And still, I recognize how traumatizing it might be for a young girl to grow up with malformed genitals (not "large clitoris"; I mean MALFORMED).

To compare this delicate medical procedure with FGM, rape, or torture is an insult to medical professionals, and shows a gross misunderstanding on the part of people perpetuating this terminology.  To compare this with homophobia (because lesbians often have larger clitorises) is ALSO obnoxious, and as a fairly masculine queer person, I find it offensive that this medical procedure would be considered homophobic.  (So all of you folks getting up in arms about homophobia on this one, DROP IT.  It makes you sound ignorant.)

So, here's my opinion, summarized: 

1. I do not agree with physically testing nerve sensitivity on patients under the age of 16 for research purposes.  (I think a 16-year old can consent.  Many teenagers are sexually active, and they can make the decision of whether or not to participate in further research.)
2. This is NOT FGM. 
3. This is not being perpetuated against women by men (an accusation I've seen on a couple of LJ's).
4. This is not rape.
5. This involves an actual medical condition, and as a biologist who works on a medical research campus who has been involved in the approval process of human research projects, I find the insults aimed at medical researchers to be off-putting at best, grotesquely insulting and libelous at worst.
6. While I do NOT completely agree that surgical intervention is the best or only approach to this condition, I believe that it's a legitimate approach, and is medically justifiable on a case-by-case basis.
7. My primary point is NOT about whether this procedure is a good one or not - it's all about the fact that too many people are jumping to conclusions, and really should read up before screaming about it.

Also, the brilliant and creative lizardspots posted about this issue, HERE.  She's just about to finish up med school and has already been working directly with patients for a couple of years at this point, and quite sharp and fair-minded.  Give her a listen, ok?

That's all I've got.  If you want to argue with me, read the actual research paper first.  If I decide to lock horns with someone over this, it would have to be a well-considered argument.  I agree - the decision of whether to surgically "correct" genital malformations is a very touchy subject.  The severity of the malformation different case to case, and only some girls have severe deformities.  I think the decision is extremely personal to the individual if older, and the family if it's a baby, and can only be decided on a case-by-case basis.  I'm not in those shoes, and I wouldn't dare to judge those decisions either way.  There are valid arguments on both sides of the issue.  

If you read the research paper itself and come to different conclusions from mine based on the facts, then I can fully respect that.  That's the nature of debate in medical research, and there will ALWAYS be differing opinions.  I welcome that discussion.  There's a lot of gray area in this sort of thing, and that's why rational discourse is so important.  However, if anyone wants to continue to scream that this medical procedure is rape, torture, FGM, or sexual abuse... back up your argument with medical science before you click "reply."

Comments

[calmnla.livejournal.com]

Hear hear! No more Glenn Becks! No more Glenn Becks! (your analogy is spot on)

[mijan.livejournal.com]

*tips hat* Thank you.

Again, I'm not saying whether the surgical procedure is always the right answer for this condition. I'm just trying to get people to stop blindly parroting the accusations of rape, abuse, torture, and FGM. It was getting to be a bit much, seeing stuff so horribly misrepresented.

[graspless.livejournal.com]

Thanks for posting about this and providing a logical perspective.

[mijan.livejournal.com]

Thanks for reading. I was just getting tired of the situation being so grossly misrepresented.

[the-willow.insanejournal.com (from livejournal.com)]

Hi,

I honestly can't remember how I ended up here. I was sure I was looking up information about the J2 BB AU.

But I find myself wanting to point out that perhaps the individuals who see the procedure you're discussing as a sexual violation, are individuals who've had their needs and autonomy brushed aside by doctors and are imagining the discomfort of a young girl or even a young woman trying to tell an authority figure, like a doctor - no.

I haven't been able to do more than read the one, I believe it was a news article on the topic (but it might have been a blog). I'm not in a place to handle something I find so creepy (I've read the accounts of various intersexed individuals who were also stimulated as children to confirm their parents had made the right choice in choosing their physical gender; and thus that image came immediately to mind). As well as myself being someone who's had some serious difficulties with medical professionals.

I don't know how up in arms fandom is, or is becoming on this topic. Your post points out the importance of going to source and linking it, and for that alone I hope it gets more attention. But isn't part of your opinion also that a certain emotional and mental maturity of the subject should go hand in hand with sensitivity testing?

Like I said, I don't know how explosive or not things have gotten. But I can understand the many abuse survivors in fandom being upset at young children having sexual sensation impressed on them at a young age, in a situation where they really have no autonomy. It might not read like abuse to you, but to individuals who were being 'good' when various family members or other authority/powerful figures stimulated them - it's likely fairly triggering.

[mijan.livejournal.com]

I did say, quite bluntly, that I didn't approve of the sensitivity testing in young girls, and that I felt the age of 16 was a minimum for consenting to such a test. I also have ambiguity about whether surgical intervention is the right approach, and said that I can't decide that for anyone, and it's a case-by-case situation.

My point, specifically, is that this is not rape, FGM, torture, or any of the other inflammatory things it's being described as.

Beyond that... how do you know I haven't had bad experiences with doctors? I've had a few, trust me. However, I refuse to paint this situation with a broad brushstroke of judgment.

Try this: If, for example, a young woman is raped by a man, is it rational for her to operate under the assumption that all men are rapists? Of course it's not rational. It IS an emotional response, and you can't necessarily change your innate emotional responses to things. So, just because a person has had a bad experience with a doctor (ob-gyn, urologist, whatever), does not make it rational or legitimate to accuse the doctors doing this research of abusing children.

You said you don't know how "up in arms" fandom is getting over this. The answer is "quite." I've seen several very inflammatory posts, linked to yet more posts, linked to other blogs... like a web being woven rapidly and recklessly. There's a lot to be said for responsible blogging. Posting a gut emotional response to half-facts (as many people on LJ are doing right now) and screaming "RAPE!" about something they haven't even researched is IRRESPONSIBLE at best.

I want people to look for more facts and first-hand sources, and then draw more rational conclusions. I want people to consider that there is far more to this research than what they expect. I want them to realize that a friend-of-a-friend's blog is NOT a reliable source. And THEN, if they're still upset, make a rational argument.

I'm quite tempted to send a message to Cornell myself. As a person who works at a medical research university, and who has been directly involved in the approval process for human research, I'm uniquely qualified. I would suggest to them that they re-evaluate their inclusion criteria for any test that involves the stimulation of genitalia, even if it's to legitimately test nerve function. I would actually suggest that under the age of 16, the doctors are permitted to ask "Do you feel that you have recovered good sensitivity? Are you feeling any pain?" Beyond that, the age of 16 should be required as inclusion criteria for patients to VOLUNTARILY undergo further testing.

So, yes, I think there were problems with the way the research was conducted. However, I still don't think it's rape, regardless of the visceral gut-instinct response is by some people. People who were abused as kids carry wounds and scars I can't imagine, and won't pretend to imagine. Still, they do these patients and doctors a severe disservice AND insult by making assumptions about the professionalism, purpose, and ethics of all involved.

That's all.

[the-willow.insanejournal.com (from livejournal.com)]

I wasn't actually focusing on the professionalism, purpose and ethics of the situation. I found you did a very good job in your OP of laying things out; the positives, the negatives, and the possibly not properly thought through.

The points I was trying to make were that people in fandom were likely having a very emotional response and there were likely to be some that had been triggered. Sometimes one can be triggered and not realize it; that is, how it is affecting one's reactions and emotions.

Personally it does make me twitchy to see you call it not rape. There's a lot of emotion and politics and isms surrounding 'rape' and people wanting to decide what is real rape and who can be raped etc. And it gets brought up and swirls around and clouds things. Which is why I referred to my view on it as a sexual violation or possible sexual violation.

My apologies for phrasing things to assume you had not been raped by a medical professional. One never knows who has or hasn't had to deal with sexual assault.

If I had the wherewithall to do a full post on this, after reading your entry, I'd suggest that there's nothing wrong with writing out one's visceral response to a thing, as long a one was aware that was what was happening. That the writing was all reactive and emotional and discussing upset and was not actual reporting.There's a difference between journaling and journalism, which I feel is the point you are making.

I sincerely hope you find the spoons to write your own letter to Cornell. The more peers pointing out problem areas, the likelier they are to do something tangible for this and future projects.

[elfflame]

Yay for some more facts-opposed-to-outrage out there.

I understand that this is easy to make a hot-button issue, and that there are problems with it, but I just really can't stand how much some are over-reacting.

I'm of the mind that intersexed should be allowed to choose whether to get any cosmetic procedures done, but I don't think most people who don't actually know someone who is intersexed really understand what the condition entails. But then, that's what comes from the medical professionals hiding this from the populace at large for so long.

And more than anything else, I think that this is no one's business but the people who love the person being given the procedure, that person themselves, the medical professional helping them, AND if necessary, the Medical board. Because otherwise it becomes too abstract.

We can get angry all we want. It still doesn't actually affect us. And keeping doctors from finding ways to decrease the trauma certainly won't help.

[the-willow.insanejournal.com (from livejournal.com)]

*to assume you had not been assaulted/troubled by a medical professional. {Whoa, focused on the word and ended up just making a really weird sentence}

[hitlikehammers.livejournal.com]

*sigh* People really need to learn that being informed does not equal being intelligently informed. Because I can inform you that the sky is green with shiny yellow polkadots.

For you to be intelligently informed, you'd have to take a look at the sky and tell me that no, the sky that you see is blue, and I'm actually wrong. Because what did you just do? You evaluated and analyzed the fact presented logically. You thought about it, formed an opinion from the facts and your thoughts about those facts, and voila: you made progress. Wonderful.

Yes, I'm being facetious; and yes, I'm only a student who's still pursuing the title of "Doctor" -- but it doesn't take training to learn how to freaking read and not jump on the controversy bandwagon without some logically-deduced, justifiable reason that an individual can defend and articulate for themselves. I mean, there are definitely moral and ethical questions and grey areas involving this study, and I don't know where, exactly, I fall on the spectrum at the present time. But as someone who has spent more than a year prepping for the dreaded human subjects review board shakedown? I do know that few institutions, and particularly ones that are so prestigious, would be allowed to do something blatantly illegal and/or unethical without some major backlash happening before now. And I also know that, while gross oversights occur more times than we like to think, if the gains outweigh the risks in the field of science? Ethics can, and will, be bent. Because ethics? They're tricky, even medical ones. Perhaps particularly medical ones. Because they're subjective, and they always will be. And there are always going to be these issues that polarize public, and even professional, opinions. And so yes, maybe it was a questionable endeavor, and there may have been better ways to have gone about it. But unfounded conclusions aren't helping anyone get anything out of the actual research being done. I mean, come on people: PEER REVIEWED JOURNALS. For pity's sake.

And I'm going to stop rambling now, because I'm rather exhausted, and I'm likely not making any real sense anymore. But ignorance and hysteria about things people don't bother to take the time to comprehend is unacceptable, in my book. Voluntary ignorance is a sickening epidemic, and this instance is a prime example of it.

[lurkitty.livejournal.com]

I agree with you for the most part.

That said, I would not be so quick to dismiss the sensitivity test. For decades, intersexed children were surgically altered with no regard for future sensitivity or sexual function. There were a variety of sick beliefs about women's sexuality including that a proper lady would never "enjoy" sex, so a woman having an orgasm was out of the question, that female sexual arousal was linked to hysterical and aberrant behavior of all sorts and that the clitoris was simply unnecessary. In my opinion, the fact that the research team is paying attention to sensitivity is a blessing, not a curse. A child as young as six is capable of experiencing sensations in their sexual organs. Why is that so repugnant? If done in a respectful way, I don't have a problem with it.

The decision to make alterations to genitalia of intersexed persons is a very touchy subject. Many such decisions were made in the Sixties and Seventies without regard to the person (and without informing them until they broke down decades later), and a lot of pain resulted. But it has nothing to do with FGM or any of the other things people are harping about.

[mijan.livejournal.com]

Understood.

[mijan.livejournal.com]

I do understand that there are people in fandom who are predisposed to have a strong, visceral, negative, emotional response to anything they could remotely perceive as a physical violation. And yes, the procedures in this research paper have a very foggy grey area. Still, if we open legitimate medical procedures to being subject to the label "rape," even if they do "trigger" those visceral emotional responses in some people, then anything can be open to interrogation and dissection.

Is a pap smear rape? Is a colonoscopy a type of sodomy? What about a breast health exam? Mammogram? I hate to say it, but some people need to understand that not everything is sexual. Sometimes, a medical exam is JUST a medical exam.

I have never been sexually assaulted, but I've had my own traumas, as have many people. Different things infuriate or upset me based on my own experiences. I had one particularly vivid incident on the 4th of July a couple of years ago when the excessive use of small fireworks and firecrackers in my neighborhood gave me flashbacks to my time in the Army, and it was all I could do to keep myself from jumping behind a wall and reaching for a weapon, or dropping to the ground and low-crawling to safety. (Betcha you weren't expecting that.) And then there was the first Bad Incident I had with a medical procedure, which I won't describe because it would take too long, but in short, for a long time, I would panic at the mere thought of being sedated or given any sort of drug that hadn't been fully explained to me, and feared that they would do things while I was unconscious that I hadn't agreed to.

I'm not saying that people's emotional reactions are not without reason. Emotional reactions are what they are, and there's no need for anyone to explain or excuse them. They simply ARE. What I'm saying is that while I recognize the validity of people's own emotions based on their own past experiences, I do not and CAN NOT accept those visceral reactions as legitimate fuel for a witch hunt. Just as I can't demand that they outlaw firecrackers because I might zone out and suddenly think they're machine gun fire, people who have experienced sexual trauma shouldn't be dictating medical procedures they haven't even researched because they had a bad flashback. People are screaming to have the doctor fired from his job, legally investigated, and I even saw suggestions that he should be arrested... all based on the misinformation being spread blog-post to blog-post.

Writing a post about your own emotional response to something you read is fine.

Writing an extremely exaggerated or falsified description of something (whether intentionally or naively) in order to incite rage in other people is NOT fine.

Anyway... it's been an exhausting week. I should get some sleep.

[mijan.livejournal.com]

This IS a hotbutton issue. And yes, there's a lot of ambiguity about which is the "right" approach... early surgical intervention so that the child doesn't even remember, or wait to let the child decide when he or she is older? Both have benefits AND drawbacks.

The thing is, congenital adrenal hyperplasia is NOT just being "intersexed." It's a complicated endocrine disorder, and ONE of the POSSIBLE effects is EXTERNAL genital ambiguity. On the inside, the girls generally have properly formed genitals and reproductive organs. Every individual is different, of course. Sex and gender are NOT easily defined. As a gender-queer person, I know just how hard it is to define gender.

But yes, in the end, it's up to the families, doctors, and the people directly involved. It's an intensely personal and private decision. I guess I'm also just upset that these parents who love their children are being called neglectful child abusers, and these doctors who are trying to help these families are being called rapists and child molesters.

[mijan.livejournal.com]

I understand your rambling. Quite okay. And yes, people clearly don't understand the scrutiny in the medical research community. Seriously. *headdesk*

[mijan.livejournal.com]

I'm not dismissing the value of the sensitivity test. Honestly, I see a great medical and research value in it. I think that the fact that people finally DO care about a woman's ability to enjoy sexual pleasure is great progress.

However... think about the society in which we live. Also remember that in ANY research involving underage patients, the absolute RULE is that you don't perform any test that isn't 100% medically necessary. So... yes, it would be prudent to ensure that these girls retain their sensitivity and function... but in our society, the implications of performing those tests in underage girls are touchy at best.

I fully agree - young children DO have sexual sensitivity. Hell, I can remember masturbating at the age of four. Not kidding. So... yes, kids can be sensitive at that age. I know this.

And yes, this is a touchy subject all around. I think that ten people can look at the exact same information and come to different conclusions about the best approach for treatment (or even non-treatment). That part is a matter of opinion. I guess what I want out of this is for people to at least get the REAL facts on this issue before storming off with torches and pitchforks. That's all.

[the-willow.insanejournal.com (from livejournal.com)]

I hope I've made it clear that I haven't been disagreeing with you. Any type of scandal-hunt based on emotions and reactions and NOT facts is something that leads to a lot of un-needed pain and strife and destruction. As I said before: There's a difference between journaling and journalism, which I feel is the point you are making.

My thoughts were on whether or not the people doing all this write-up, were triggered and not realizing it; reacting emotionally and viscerally to err on the side of protection. And also my thoughts on the initial 'reporting' or 'popularizing' (that might be a better term) of the study and the story and how that might be playing into things.

You've made it very clear you've been following this a LOT more closely than I have and that all sorts of things are being said and labeled and interpreted - without checking source.

But re: pap smear and rape. That was my experience. The doctor wouldn't listen to me about the size speculum needed, hurt me so badly because of that I bled afterwards for three days, had me screaming so loudly several people came to the door but the doctor wouldn't let them in, and had the nurse holding me down. And had my partner of the time torn between also telling the doctor to stop and take it out, and holding my hand and trying to deal with me screaming and being so traumatized after, that I couldn't move.

Granted I have a past I flashed back to during that incident which compounded the situation - but that was also in my records.

It's not penetration, or stimulation that automatically makes something a violation - it's the how. To my mind at least.

Thank you for talking with me. Rest well. And no, it's not a surprise to find a soldier on livejournal or in fandom.

[mijan.livejournal.com]

Thanks for taking the time to listen. I know you're not disagreeing with me. I think I'm coming off as potentially more abrasive or confrontational than usual because 1) I'm in mental debate mode, 2) I've had a hideously long and exhausting week, 3) I'm at my in-laws' house, and 4) I'm still feeling the residual effects from being sedated and drugged for a medical test/procedure yesterday. And of the people who worked on me yesterday, I have nothing but good things to say - proof to me yet again that I can't judge everyone by previous bad experiences. Either way, I know you're not arguing against me here. I'm just... reacting and jotting down thoughts as they come.

And I also appreciate and respect your willingness to share a traumatizing experience. I will fully support the notion that there are true asshole doctors out there (I've met more than one) who don't give a shit about patient comfort, who are careless and harsh, and who violate the trust that they're supposed to validate. I'm sorry you encountered one of those.

You're absolutely right - it's not WHAT is done, but HOW it's done. Truth be told, that's the way it is with many things in this world.

I didn't think it would surprise you to find a Soldier (veteran, actually) in fandom. However, when people talk about "triggering" things in fandom, they almost always seem to be talking about rape, suicide, psychological disorders, and so on... but nobody in fandom seems to think of battle scenes, violence, or combat situations as "triggering." There's a reason I don't like war movies. Sci-fi and fantasy are different - the element of disbelief (it's not raw or real enough) glosses over the stuff that gets to me. Phaser fire and laser beams? Photon torpedoes? No problem. Get a machine gun going, however, and I'm damned near ready to go into battle mode. It's like a different personality "switches on." I can push myself in my own writing because I control the story and the pace, but some things just get to me.

And... fuck, why am I still awake? LOL.

Thank you for talking with me, too. Take care of yourself, and be well.

[ias.livejournal.com]

Crikey, there's a fuss about a retrospective study of patients who've undergone a type of surgery to find out if the surgery has been effective? Do the people who object want to stay in the dark ages?

Personally I don't have a problem with any person over 5 (at which age you can expect truthful answers to 'can you feel this') having a sensitivity test when they have undergone an op which could have caused nerve damage. If they had had an operation on their hand they wouldn't not have their finger sensation tested because they were under 16. Genitalia shouldn't be exempt from this testing due to squeamishness over sex. Sensory testing isn't in any form sexual, no more than having a transvaginal ultrasound or a cervical smear test (or would these people still view a smear test as rape?). The mere fact that this sort of testing hasn't been routinely done on patients who have undergone NSVC means that much of the debate about whether the operation should be done at all is done from positions of ignorance of the benefits or disadvantages of the surgery.

The lack of a control group is problematic but the way medical science often works is for comparatively small studies to bring attention to the lack of solid research in an area and then another team of researchers to follow-up with larger, controlled trials (randomisation is, of course, impossible in this sort of area).

I'm shocked that people can be getting upset about this, which is a study of the efficacy of a surgical technique previously preformed on the patients by a single surgeon and is not an advocacy paper for the surgery being a 'cure' for any given disorder. Heavens the study group involved patients who has this surgery as a result of a variety of conditions.

Hey ho, bandwagons as you say.

[oconel]

I hadn't read anything before in my f-list, so thanks for the info :)

What saddens me is that there are several people on lizardspot's post that don't listen (it's the Internet, right?) to what she's saying about CAH and its problems and focus only on the intersex part (as if having a closed vagina can't be problematic).

[the-willow.insanejournal.com (from livejournal.com)]

The first recognized/diagnosed/observed PTSD patients were soldiers, under the term 'Shellshock'. I've never forgotten that. Plus I have my own intersections with violence and trauma.

But I also know one or two others who're both veterans of their childhoods and veterans of socio-political military engagements (deployments? the lingo is lost on me).

And now I'm getting my butt to bed.

[melusinahp.livejournal.com]

Thank you. This was a great, well-reasoned and well-researched post.

[kaberett.livejournal.com]

Parents do a lot of actively wrong and abusive things through simply being misguided. It doesn't mean that they don't (think they) love their children but it also doesn't make the actions any less abusive.

[mijan.livejournal.com]

"or would these people still view a smear test as rape?"

Some would.

The reason I'd advocate for an older cutoff for the sensitivity testing is because of the misconceptions and the risk of people throwing a hissy fit. I've worked on a committee at a medical research center that actually screens research projects with human subjects (patients) to make sure the project design is fully ethical and unquestionable. When the research involves children, the standards are EXTREMELY tight. The standard is that no test can be done for RESEARCH ONLY beyond a blood draw.

I agree - the sensitivity testing does seem prudent and highly valuable, and unlike what some people are imagining, they're not "sexually stimulating" these girls. They're just checking for nerve function in a clinical manner, but some people can't see the difference.

I'm not shocked that people are getting upset about this. (C'mon, this is LJ. Any excuse for wank, right?) It's controversial as far as many people are concerned. What I'm upset about is that people are snapping to flash judgments without getting the facts. If they read all the facts and THEN disagree with the ethics of the research, then I'm open to that debate. There is significant gray area in this issue, open for debate - whether they should be doing the surgery at all, whether they should wait until the kids are older, at what ages research and testing should be done, and more.

But simply put - people get squeamish about ANYTHING that could be remotely related to sex. Some people have had honest, authentically traumatizing experiences that would cause them to strongly object to any of these things. And some people simply don't understand medical science. It's not an easy topic.

Thanks for reading.

[mijan.livejournal.com]

Yeah, people aren't recognizing that CAH-induced ambiguous external genitalia cause a specific set of problems, and that perhaps these people's situation is NOT what they're imagining.

While I don't fully support the idea of the cosmetic portions of the surgery before the kid can make her own decisions, I understand both sides of the argument. It's an honest debate of medical ethics, and both sides have valid points. What I can't tolerate are the misrepresentations and false information being spread to incite anger.

Thanks for checking this out.