[tri-med] Re: Non-Invasive Direct Testing for Trisomy

----- Original Message ----- 
From: "Barbara Farlow"
> Sequenom has been working on this for a while.

Yes,
I have been following the trials for a long time and have given the lists 
updates every so often.
I dont thing the problem is genetic testing or diagnosis. We already have 
that, this is just going to make it more widespread and a one visit answer 
instead of a screen, ultrasound then amnio. It took what 10 - 15 years for 
prenatal screening to become common place. Lets see how long it takes this 
test to be "routine" for all pregnant women and if pre-test counselling goes 
with it.

My personal opinion on the matter is that the primary issue for our kids is 
genetic discrimination. Unfortunately very few people will see the 
possibilities of genetic discrimination until it directly effects them. Of 
course by then the legislation has been passed and its so much harder to 
change.

Of course then you get such rapid inaction as here in Australia. I 
participated into the enquiry into the Law Society's Protection of Genetic 
Information in 2002 (requested by the government) and papers were produced. 
What action by our government - NONE. So at the moment everyone born in 
Australia has their DNA on file via postnatal screens - if the government 
wants it - and presently there is no legislation only "guidelines" to stop 
them getting it. And there is nothing to stop your employer requesting 
genetic testing when you are employed along with your medical etc etc. 
Similarly we cannot protest the non-treatment of our kids based on their 
trisomy as its not illegal. We could try under the "disability" part of the 
human rights laws but the government and all government agencies are exempt 
from them. Offa my soap box now before I get a nose bleed :-))

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (14 years, T-18 Mosaic)
http://members.optushome.com.au/karens



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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