[tri-wings] Genetic Testing

I just watched a tape I made ages ago of a television programme on the ethics 
of genetic testing. It was definitely an interesting program which looked at 
both sides of the question of genetic testing. 
In it they gave figures related to some British research regarding the way 
genetic testing was offered. It was incredibly interesting and anecdotally 
related to what I have seen amongst the general population with regards to 
prenatal testing. 

So I would like to test the same question on the families of triers. This will 
not be a full fledged study - rather a amature pilot. I had already decided to 
stop working full time in a few weeks to give more time back to the list, SOFT 
and to TRIS anyway. So this seems like a nice place to start. (Yes I really 
will miss the income, even if its only about $500 aus a month - $350US but its 
an altrusic decision and I will live with it for the sake of our kids and their 
families)

So, I am going to throw a few questions to everyone, you can answer on list or 
direct to me personally ( trisomy@ optushome.com.au ) note you need to remove 
the space after the @ symbol. I will follow stringent research principals and 
any and all identifying information will be coded and removed from what I am 
looking at. Of course if you answer on list people will know who you are - so 
if you want a confidential response answer OFF LIST. Its not easy for me to go 
through and dig out information that you want deleted from the archives!!!

Everyone who responds will get a copy of the results. I will set a time frame 
for this initial set of questions, 2 months, however depending on what comes 
out of it I may make it longitudinal and place it on the web site. I will also 
ask the questions in a block at a rate of one every day or two. You can answer 
them as you have time within the 2 month time frame. However I would like folk 
to answer them as I post them because responses may change the way I pose the 
questions :-) 

You can forward these questions on to others that you know personally - please 
DON'T post them to public forums though eg other lists or message boards.

The general aim of these questions is to answer the hypothesese that:

1. How genetic testing/screening is offered to an expectant mum will effect the 
number and type of testing that expectant mothers / fathers will undertake.

2. A parents understanding prior to testing/screening will effect the number 
and type of testing a parent will consent to.

3. Prior results and experiences will effect subsequent consents to genetic 
testing/screening.

Some of the questions and responses may tempt folk to discuss the implications 
on list - which is fine - but please, please, please remember that this is a 
list open to everyone and that as a list we RESPECT everyones decision to have 
differing beliefs and values. Keep any responses non judgmental please or I 
will regret opening this can of worms and start moderating the list - something 
I havent had to do in a long time (because everyone is so good)

Some of the questions may also stir up feelings and thoughts that you have 
hidden, I apologise now in advance if any aspect of these questions causes 
anyone any distress.

Now for the questions..............

I have not lost my mind - it's backed up on disk somewhere.
-- Unknown

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (9 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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