In viewing the ISNA website, I found the following resolution. It is a product of the "Society For The Study Of Social Problems". I am definitely interested in feedback.

RESOLUTION

"WHEREAS five times per day in the United States, plastic surgeons at major hospitals perform cosmetic surgery upon the genitals of infants of young children, and

WHEREAS these operations to improve genital appearance often result in severe negative effects, including the permanent loss of sexual sensation, lifelong bladder infections, and the loss of fertility, and

WHEREAS having genitalia that look atypical is not a medical emergency, so that surgery can be postponed until a child matures sufficiently to make a full informed decision whether s/he considers the risks worth the benefits,

THEREFORE BE IT RESOLVED that the Society for the Study of Social Problems urges all legislative bodies to draft legislation prohibiting genital cosmetic plastic surgery and/or accompanying hormonal treatments upon minors if it involves substantial risk to health or physical function, including future sexual function and fertility, unless the minor is sufficiently mature to give full informed consent to the procedure, and

RESOLVED that the Society for the Study of Social Problems urges
legislative bodies to define as medical malpractice cosmetic plastic surgery upon minors that involves substantial risk to health or physical function, including future sexual function and fertility, and that is performed upon a minor who does not consent or who consents and is insufficiently mature to give full informed consent."

I agree with the resolution.

If parents and families would focus on all of the wonderful and positive aspects of their child / loved one and take the focus off of what's "different" about them, the child would have higher self-esteem and quite possibly not spend as much time focusing on the fact that some part of them is "different".

We have drugs that can hold off puberty if the child needs more time to make an informed decision, so there's no rush to do anything as long as it's not a life threatening medical problem.

If doctors become accountable for the new set of problems they create for many of us from unnecessary surgery, maybe they would think twice about performing them. One would hope anyway.

I'm afraid that a resolution like this wouldn't pass though because of all the fear, predudice, and stigma that runs ramid throughout the medical field, not to mention the rest of our society. (Working in the medical field myself, I experience it on a daily basis.) That's why we need to get out there and educate everyone who will listen to us. MAKE THE MOST OF EVERY OPPORTUNITY !!!

That's my soapbox speech for the day.

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Kara

Hi Kara,

Thanks for your post. I have done reseach on the "Society For The Study Of Socal Problems", and have discovered that the organization was founding in 1951, and publishes the respected sociological journal "Social Problems" through the University of California Press. Here is some of what I found:

(**** 9/26/04 UPDATE: As noted further down in this thread, the Resolution many not be the product of the Society For The Study Of Social Problem, but rather the name might have been made up by ISNA as a place holder. I have sent ISNA an email about this issue. At this point, there is no documented connection between the Society For The Study Of Social Problems and the Resolution. ****)

Peter

A nice symbolic feel-good item. However, it presumes a one-size fits all approach, particularly when it comes to hormonal treatments. At what age is "mature enough"? And in the cases that Miriam has pointed out in the past, it doesn't fit at all.

And I'm not sure that using drugs to hold off puberty is any better than using drugs to ensure development. Drugs like lupron come with their own set of pitfalls as well and you could be substituting one bad choice for another.

Betsy

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Until you've lost your reputation, you never realize what a burden it was or what freedom really is. --Margaret Mitchell

Hi Peter,

Thanks for the reference to ISNA's website, which I visited and was pleasantly surprised to find a whole new format....I haven't visited their website for quite some time. In browsing more of the links offered by ISNA's home page, I came across this ( URL below) which discusses medical rhetoric inre treatment of intersex..... of particular importance/interest to me was this excerpt from the link:

A "small" penis must be constantly reaffirmed in its adequacy to fulfill masculinity. After testosterone treatments [HCG] are administered on the child, physicians look for a reaffirmation "of his allegiance to all things masculine." (Newman, Randolph and Anderson 1992, 645) Parents are reported as having "encouraged more appropriate male behavior". (Guthrie, Smith and Graham 1973, 250)


http://www.genders.org/g38/g38_hester.html


My step-father did a lot more than just merely encourage me......... I wonder how many more parents (in the same situation) were that "avid" as my step-*&%$# ?

I'm thinking child (psychological, physical and perhaps sexual) abuse are major issues in the lives of many children, and feel especially so (various degrees) in intersexed children. I looked into Society for the Study of Social Problems homepage, and they didn't have all that much (maybe I just expecting more

Dana

Hi Betsy,

I would like to know more about what you are thinking. I personally think that the resolution is a step in the right direction for some of the following reasons:

1) It strengthens the concept of informed consent. I believe that parents are often influenced by a cultural bias in favor of normalizing surgery. In cases where surgery is necessary for the physical health of the child, I believe that there should be requirements that the doctors have provided parents with adequate information about the possible benefits and risks of proposed procedures. I would like there to be some written documentation that full informed consent has been provided to parents. I recommend that parents be provided references to organizations like Cares, Bodies Like Ours, and ISNA so that they can get a broader perspective. In cases, where the surgery is primarily cosmetic in nature, I believe that treatment decisions should be postponed until an age when the child can provide informed consent. What I found significant in the New York Times article was that the idea of involving the child in CAH treatment decisions at an appropriate age was seen as the best possible compromise between competing social demands.

2) I like strengthening the informed consent requirements because it avoids to obvious pitfalls. The first pitfall, as Miriam, Emi, Thea and others have pointed out, is that requirements that the definition of intersex be legislated will encounter sharp disagreements as to who is intersexed. (**Line removed at Emi's request as being inaccurate statement of what she said**) The resolution strengthens the rights of all children faced with normalizing surgeries that are basically intended to increase their acceptance by others. A second pitfall that the resolution language avoids is trying to directly ban genital surgeries and other hormonal treatments. In the past, Miriam has said that teenagers can be fully involved in making treatment decisions, and they can request genital surgeries if desired. I believe that surgeries should be available to intersex people, if we provide full informed consent for the medical procedures.

3) I like the clause of the resolution that asks that legislative bodies consider making non-consensual medical treatments a form of malpractice, in cases where the surgeries are cosmetic in nature. I would like to add that, as you have said in the past, that following the removal of the statute of limitations for priest abuse cases, that we seek to remove the statute of limitations for past intersex treatment abuses.

Peter

Duplicate post, sorry. -- Peter

it's right here too as a PDF-file

http://www.bodieslikeours.org/resea...calresearch.htm

Point by point, or paint by numbers

As I wrote, it was the hrt issues I was responding to. Anyone can come up with a resolution (and many orgs have regarding IS treatment). No matter who does, they are symbolic in nature and mostly feel-good for the org that does it.



I'm not sure how it would strengthen informed consent rather than merely shifting it. Not that there is anything wrong with that, and I would like to see that to occur if done properly. And yes, referral to support and advocacy orgs is vital. And yes, I agree with the premise of supplying lots of information to parents but you cannot legally force them to read it.

Not all treatment can wait until the child is old enough to participate and each condition (and even within the same diagnosis, each person is different) and has its own considerations and issues.

Even with CAH, not all surgeries are purely consmetic and often there are urinary tract issues that must be dealt with. The problem arises when docs convince parents that they can do one-stop shopping, including cosmetic clitoral surgery. Also, there are vaginal issues and that surgery must be done before puberty and while I believe it is better to wait so the child can participate to a certain extent with the process, I don't think the child is able to give informed consent at the age I would prefer to see them done (11 or 12). I don't see delaying puberty as a solution because the drugs used to do so come with serious side effects. I don't see opting out of vaginal surgery as an option because I think removal of the uterus and ovaries is a choice that only an adult should make after very careful and serious consideration.

One of the problems with the current state of affairs at least with CAH is everything is being done in infancy on the assumption the child won't remember. That in itself is a fallacy because the child will be reminded by the scars and frequent exams.

This example is just CAH, other intersex conditions have different needs and one size won't fit everyone.

Finally, while I have great respect for Cares Foundation and consider Kelly a colleague and friend, I'm not sure that someone who feels that surgery is ok if done by someone who does it frequently is a good solution. Check out their medical advisory board. To give you an idea of where she is on surgery, she feels the article in the Times was horribly biased.



I'm not sure trying to encompass craniofacial conditions is a wise move in our struggle to change medical protocol for intersex conditions. One major difference is that we don't wear our genitals on our face. The other being I don't see a movement by those who had cleft lip surgery in infancy speaking out against the practice.



It is a form of malpractice already. The current informed consent laws are not being broken. Instead, it comes down to who has the right to give consent and for what reasons? And how do we legally legislate the differences between procedures that are truly cosmetic and others that may be depending on personal definitions. Do we seek laws that treat clitoral surgery separate from hypospadius surgery? Do we seek laws that cover all consmetic surgery on children? What if you have a child with a lame leg? Laws that treat all cosmetic surgery as equal could have unintended and horrible consequences. If we seek only laws that are IS specific, you end up back at square one trying to define what exactly is an intersex condition. Not even all physicians agree on what makes up an intersex condition. I read a post from a physician on a listserv for docs just yesterday where he said CAH was not an IS condition, yet go to websites of places like Johns Hopkins and they have it defined as one.

I think kicking around legislative or legal remedies is a great exercise, but I don't see the fruition of the vast majority of them as a reality or even beneficial. Regarding informed consent, I'm pretty sure I have made myself very clear in the very recent past in regards to my support of it http://www.bodieslikeours.org/forum...74&postcount=28. Right now, the consent that is given by parents passes legal muster. As I pointed out in the above post, legislation that requires further certain steps (even if symbolic) be taken could open that door to civil redress in the form of malpractice. legislation such as this is easily implemented, doesn't require an overhaul of current legislation because it only expands it rather than revamping it, and would not need differentiation of different situations. This is where those pesky statutes of limitations could get in the way though and seeing those laws change would be a good start.

One reality I do see is changing the protocol that doctors use when confronted with the birth of child who looks a bit different. There are many human rights violations that have gone the way of the dodo without laws but by reason, ethics, and outrage. Thankfully, that is already happening, albeit slowly.

Betsy

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Until you've lost your reputation, you never realize what a burden it was or what freedom really is. --Margaret Mitchell