Eric Vilain. Disconcerting

[Sophie338]

Hi I have to say this...

I have reached the stage where I feel I need to say this because if I dont I will not feel
as though I have said what I need to.

Recently there has been a lot of discussion on the internet about one Professor Eric Vilain. A lot of this
has been very positive about him. However there are some ideas that he has in the past and at present put foreword that cause me some concern.

A few years ago he did a study into a gene known as WNT4. The technical details of this are quite lengthy to describe here. But the basic outcome of this was that Eric Vilain suggested that he could one day
use this information to ensure that no child is born with “malformed genitalia”, Rather they can be modified using gene therapy in utero.

More recently Eric Vilain has published numerous articles about “brain Sex” where, he suggests that an intersex child can be assesed by a “Genetic brain sex test” to ensure that the correct gender is selected when opting for surgery, on a child.

I have to ask this question. Why? when Professor Eric Vilain is making such uncomfortable claims is he regarded so highly? I am not going to be accusing him of indulging in Eugenics or some other form of
social cleansing. But often his remarks do tend to leave me with the impression that he perrcieves intersex people as people who must be fixed to fit. And suggesting some disconcerting methods to achive this. (Such as somatic gene therapy in utero, post conception).

If some medic suggested bleaching an Afro Carribean child’s skin in utero by knocking out the genes that produce melanin. He would not be facing such an elated audience I dont think. So what makes an intersex child so different?

All the best wishes

Sophie.

[Betsy]

I don't get it either Sophie. It's assuming that our queer bodies are in need of even more fixing because in his mind, being born with a queer body is a problem. A problem for who? Society.

It may seem to add validation to some within the trans* community but even then I see grave danger. Expectant moms have abortions for all sorts of reasons when they learn through genetic testing there may be a problem. While I am pro-choice, I have some issues with abortion as a quest for perfection.

"I'm sorry, Ms. Someone, but your baby has a female brain and an SRY gene which indicates that little Steven will want to be little Susie. "

Tell me that mom is not to be running off to have an abortion. It's society that needs fixing, not our brains, our genes, or our bodies.

Betsy

[Sophie338]

Hi Betsy :)

Well this is what is bothering me basically. Everything you are saying about abortion is perfectly true. It is this somewhat patronising idea he seems to promote, that our lives are not worth living unless "modified" to fit the "norm".

Worse still is the way Eric Vilain seems to be accepted so openly when actually saying things like "We must correct a child with malformed genitalia" and "We can one day find a way to ensure all children are born of one or the other sex".

Then I read things like "Eric Vilain has made big Breakthroughs for intersex people". I ask myself How is finding ever more insidious ways to treat us a breakthrough?

Eric Vilain has made one big breakthrough. He has shown us all that people can be seduced into believing that designer babies, IGM and human vivisection (I think of the somatic gene therapy gaffe) are all part and parcel of the answer to the "intersex problem"

Whatever Eric Vilain is trying to say, the language and tone he uses scares the crap out of me to be honest. Either Eric Vilain comes clean out with what he is really up to, and tells everyone exactly what his agenda is, or he will be fostering a lot of mistrust.

I should make the allowance that his first language not being English means that some things may be lost in translation. But I will be honest, Somatic Gene Therapy on unborn children, Defining reasons for proceeding with IGM and Eric Vilain not even considering things like the abortion issue you mention, scares me.

I am prepared to say this.

Is he prepared to come on to this site and discuss it with us, the people he will no doubt be affecting?

If there is anyone who knows him on this list. I am challenging him, now, to come onto this list and to answer these questions.

Because if he is so wonderful he wont mind answering the many concerns people have about what he has been saying in the past four years.

All the best

Hugs :)

Sophie.

[Dana Gold]

I only have one word to say in all of this thread and the topic implications:

Eugenics.

Dana

[blue]

i'm heartened to see people call this kind of "science" what it is--eugenics is the accurate word.

i believe we'd benefit by building strong coalitions with Deaf activists who oppose cochlear implants on infants, as well as other disability activists who fight similar battles. there is a strong relationship between all of these surgical/medical "normalizing" projects.

[Sophie338]

Hi :)

Well I have encountered a website that is I understand, a website that is supporting intersex people. Only I read this..

http://www.intersexualite.org/Supporters.html


"Our respects to Doctor Eric Vilain, our authority on scientific questions.

All the members of OII are deeply moved by the kindness of Prefessor Vilain who has agreed to help us understand scientific questions related to brain sex.

We are convinced that his research offers the greatest hope for intersexed infants of the future."

If anyone from this website is on this list, can they please explain to me where the benefits lie in Professor Vilain's application of his research?

I am not being hostile or antagonistic, I just need convincing, as both a genetecist and as someone who is interesexed.

All the best wishes

Sophie.

[blue]

hi Sophie--i am new here but have been voraciously reading the archives and have really appreciated many things you've had to say.

in re: the eric vilain question--the only thing i can construe from that quote (about the benefits of his research) is that whoever said that believes his research will help doctors assign intersex infants more accurately... from what i have read (for example, at http://home.vicnet.net.au/~aissg/UCLA.htm) eric vilain thinks the way to help intersex infants is to improve the accuracy of sex assignment for surgical reasons: ""WNT-4 offers another diagnostic clue that explains why certain cases of sexual development go awry," Vilain said. "Firm diagnosis through genetic testing will equip physicians with the information they need to help parents make important medical choices early in their child's life.""

So the goal there is not to stop IGM but to perform it with greater "accuracy."

*shudder*

and the greater implications? exactly what you mentioned in an earlier post:
"Vilain's laboratory next plans to explore whether scientists can reduce the chromosomal dose of WNT-4 in the embryo of pregnant women whose first child possessed malformed or ambiguous genitalia.

"Our findings suggest that clinicians could identify the WNT-4 duplication prenatally," Vilain said. "If this proves true, in the future we may be able to correct the defect in the womb and restore the embryo to its original male status. This may repair the genital malformations before the child is born.""

and that, to me, says eugenics. but to some, this is seen as great compassion. it makes me feel so sad and sick i barely know what to do with myself.

what i can't understand is saying this will offer hope to intersex infants of the future--to me it seems to imply the hope is that there will *be* no intersex infants in the future!

i hope there is actually some reasonable explanation for all of this that i am missing somehow. maybe someone from that list will elucidate.

in the meantime, i am thankful not to be alone with my concern.

[Dana Gold]

I whole-heartedly believe in these words (quoted) by Betsy in an earlier reply post in this thread:

"It's society that needs fixing, not our brains, our genes, or our bodies".

Amen, Betsy.

Dana

[Sophie338]

Hi Blue :)

You Said..



in re: the eric vilain question--the only thing i can construe from that quote (about the benefits of his research) is that whoever said that believes his research will help doctors assign intersex infants more accurately... from what i have read (for example, at http://home.vicnet.net.au/~aissg/UCLA.htm) eric vilain thinks the way to help intersex infants is to improve the accuracy of sex assignment for surgical reasons: ""WNT-4 offers another diagnostic clue that explains why certain cases of sexual development go awry," Vilain said. "Firm diagnosis through genetic testing will equip physicians with the information they need to help parents make important medical choices early in their child's life.""

I know :) I wrote at some length on this, and this can be found at:


http://home.vicnet.net.au/~aissg/gender_genie.htm

I think the idea that people consider such things to be compassionate really makes me angry. You are right it is very sad.

Heres my rant medics rant...

I think what bothers me the most is the fact that surgical intervention (That can be very painful), Designer Babies (Somatic Gene therapy in utero is really scary) and the like, seem to tell me that My life is either worthless, and that being "sexed" was a good thing. (In my case not is wasnt it was sheer hell).

Today after my expereinces of being "Fixed" as a child I hear people saying "This did what they thought best they didn't want to hurt you" I say "indifference to my integrity as a human being from conception onwards was and is both insulting and malicious, they did what they did out of malice!"

It never goes down well, but then I was somehow brought up with the message that I didnt have the right to exist unless I was
"Fixed" what am I supposed to think.

I will say that the notion that an intersex child is regarded as less than human until they are "fixed" is really disturbing. What hurts me the most is that the website I quoted, is from what little I understand (I cannot read French very well) a website that supports intersex people. When people accept the unnaceptable, then bad things happen.

I genuineley believe that there will be another David Reimer like scenario. If Vilain does this "Brain sex" test and gets it wrong. (And based on what he and his fellow medics like Mc Ginley say on my condition, they will!). I just have this terrible feeling that the Reimer case taught them nothing. In Money's time it was fashionable to say gender was social, today it is fashionable to point at genes. Sort of "Oh we got it wrong with nurture, lets test the nature hypothesis".

I am being outspoken and I have felt nervous about confronting the Eric Vilain issue. I am glad myself to find that I am also not alone with this concern :)

Thanks :)

All the best

Hugs :)

Sophie.

[Sophie338]

Hi Dana :)

I whole-heartedly believe in these words (quoted) by Betsy in an earlier reply post in this thread:

"It's society that needs fixing, not our brains, our genes, or our bodies".

Amen, Betsy.



I second that :)

Many hugs

Sophie

[Betsy]

But of course, convincing those who would seek an empirical solution to the 'intersex problem' is another situation. I had to laugh today when I was sent yet another copy of his lame Op-ed piece that I responded to previously. It's been published three times and three times I have had the same letter printed in reaction to it.

Betsy