Inquiry into the Protection of Human Genetic Information.
The Australian Law Reform Commission (ALRC) is conducting an inquiry on behalf of the Commonwealth regarding the protection and use of human genetic information. As a group concerned with genetic variations, this has many important implications for people living with intersex conditions for current and future generations. We urge all members to participate in the community consultations, and to submit private comments to the ALRC.
The ALRC's website is located at http://www.alrc.gov.au .
AISSGA Submissions:
First Submission (February 2002)
Second Submission (January 2003)
"Genetic
engineering with its pre-determination disturbs me. It robs humanity of
the unknown factor that makes life worth living."
- Jean Luc-Picard, Captain USS Enterprise NCC1701-D
"Murdoch Children's Research Institute Sex Study"
By Assoc. Professor Andrew Sinclair
"The Sexes: New Insights into the X and Y Chromosomes"
The distance between Mars and Venus might be closer than previously thought.
The Scientist 15[15]:18, Jul. 23, 2001
By Bob Beale
Prenatal Diagnostic Testing in Victoria 1983 - 1998
By Tony Briffa
(This article appeared in dAISy March 2001.)
In light of the recent discussions on
prenatal genetic testing for intersex conditions, I have obtained and reviewed
the publication “Birth Defects in Victoria 1983-1998” Perinatal Data
Collection Unit, Victorian Government Department of Human Services, Melbourne,
August 2000.
Note: I
do not support the use of words like “defect” or “abnormal” when it
comes to intersex conditions like AIS, CAH, Turners and Klinefelters.
As I am reporting on the facts contained in this publication, I will use
their terminology.
Some statistics in this publication include:
Birth Defects 1983 – 1998
•
213 Turner
•
77 Klinefelter
•
189 Other Sex Chromosomes
Terminations before 20 weeks gestation, 1989 – 1998
•
98 Turner
•
28 Klinefelter
•
39 Conditions due to other sex chromosome anomalies
I have many friends with Turners and 47XXY (otherwise known as Klinefelter Syndrome) and I am appalled that terminations are recommend or that they are even classified having a “major defect”. These friends include academics, a retired politician and schoolteacher (who was knighted for his service to the Parliament), Engineers etc. I am concerned that women who are told they have a child with in intersex condition are being told that their child will have major abnormalities without even contacting the relevant support groups and meeting some adults with the same condition that their child has.
There are still many doctors who refuse to let teenage and adult patients know about the presence of support groups, just as there are doctors who withhold the full truth about a child’s intersex condition from their parents. Given that this is the case, what are the chances that some doctors will be upfront and completely honest with a woman who is pregnant and who may consider terminating a child with this “major defect”? I know not all doctors would recommend this, that didn’t stop the termination of 165 children with intersex conditions in a ten year period in the state of Victoria alone.
There recently has been has been talk of screening for AIS along with other “major defects” such as Down Syndrome, Cystic Fibrosis, and Spina Bifida. I am personally against this, and think of all the wonderful friends I have with AIS all over the world and how much they have added to my life and that of all their friends and families.
In case of prenatal genetic testing I have to agree with Garry Warne’s comments of dAISy September 2000 “It is a mistake to focus too much on the medical aspects of AIS.” (Dr Warne is also personally opposed to genetic testing for the termination of intersex infants). I believe that screening for AIS will lead to the further medicalisation of AIS and those of us with it without any benefit to our lives, while culling future generations of our special AIS siblings.
I would rather see a focus on improving our quality of life with an emphasis on counselling, support, research into osteoporosis, fertility and hormone therapy, truth disclosure, improved surgical techniques for adults wanting vaginoplasties or phalloplasties, increased knowledge and emphasis on non-surgical dilatation, legal status of people who identify as intersex (i.e. not exclusively male or female), public education programs on AIS and our issues, etc
Following a private discussion on this article, Tony responded:
I'm glad that Eric Vilain is
on NATFI, but I feel he has much to learn from the various intersex groups and
our representatives. Without wanting to sound overly unfair, I think he
first needs to understand the concept of gender, and that looking completely
male or female does not make someone identify in that gender. We have seen
this time and time again with both intersex and transsexual people.
Vilain is quoted as saying "Our discovery offers insight into the genetic
pathway of sex determination - what makes a man male and a woman female".
This is incorrect. What makes a man male or a woman female is the
individual's brain and their self-identified gender. The way the body
looks has nothing to do with it.
"These findings suggest that WNT-4 influences the sex determination pathway
at each step of the way," Vilain said. "We discovered that when the
amount of the gene fluctuates even slightly at any stage in the genetic
blueprint, it changes the embryo from male to female." This part is
mainly correct,
but what he means is that the amount the gene fluctuates changes the embryo from
looking phenotypically male (or along male lines) to phenotypically female (or
along female lines).
"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."
Presumably he is saying that genetic testing will then enable physicians to
surgically and hormonally reinforce the gender of assignment more confidently.
I think this is dangerous. Very dangerous. Why not settle for simply
raising the child as either male or female (without surgery) but leaving the
right to self identify and body integrity to the individual? I think most
children know by the time they are 12 if they want to develop as a male or a
female. I am yet to see anything that suggests that genetics can ALWAYS
predict the gender a person identifies. Given this, why should there be
such a rush in surgically assigning gender?
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." I find this highly
offensive. Many intersex people do not consider themselves defective.
I certainly don't. If anything was defective it was the medical treatment
I received. The treatment Vilain is hoping to create is vile. It is
blatant gendercide. This so called treatment would have everyone with
AIS born with completely "male" genitals, with nothing to guarantee
the self-identified gender of these individuals. Whilst this outcome would
be of benefit in my particular case as I am male, I am gravely concerned for the
future generations of people with AIS as most identify as female.
I hope that NATFI listens to the intersex community about this very important
issue. After all, intersex people are the true experts in living with
intersex conditions.
I - like most in the intersex community and in line with the policies of the AIS
Support Group Australia - would love to see the focus on research into intersex
conditions shift into:
 |
research into hormone therapy (both testosterone and oestrogen), |
|
surgical techniques for intersex adults including vaginoplasty and phalloplasty, |
|
non-surgical dilatation, |
|
timing of gonadectomies, |
|
bone mineral density, |
|
fertility etc. |
"The Gender Genital Gene Genie"
An article in response to genetic
research conducted Eric Vilain at
the UCLA. Written by Sophia Siedlberg, Bio-informatics Developer in
the United Kingdom and supporter of the AIS Support Group Australia.
with
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