Group challenges Down testing

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Group challenges Down testing

3News NZ

Taya, Dylan and Molly are friends, all with Down syndrome, born with an extra 21st chromosome

Taya, Dylan and Molly are friends, all with Down syndrome, born with an extra 21st chromosome

By Alex O'Hara

The International Criminal Court is set to launch a formal preliminary examination into the New Zealand Government's antenatal Down syndrome screening programme.

Saving Down’s, the group who filed the complaint, says the Government programme devalues the lives of their children and that's a form of persecution.

Taya, Dylan and Molly are friends, all with Down syndrome, born with an extra 21st chromosome.

Dylan’s mother, Janine Bezencon, says bringing up a child with Down syndrome is “an absolute joy”.

“I really mean that with all my heart.”

A group of other parents, known as Saving Down's, agree and have taken the Government to the International Criminal Court for its antenatal Down syndrome screening programme.

“We have got pregnant women going to their midwives,” says Mike Sullivan, father of three-year-old Down-affected Rebecca. “They've got a wanted pregnancy. They're being given the opportunity to engage in a testing programme that selects that child on the basis of its genetic difference and that's a practice of eugenics and that's prohibited under international law.”

Last year they filed a complaint with the ICC at The Hague, which usually deals with war crimes. They've now learnt the court has decided to go ahead with a formal preliminary examination, making it one of only eight cases worldwide.

“This is unprecedented,” says Mr Sullivan. “They've got a result after a thorough legal analysis of the situation. It means the prosecutors accept that there are merits and concerns with the information raised by the court.”

More information will now be tabled and further discussions held between the prosecutor’s office and the New Zealand Government. 

Saving Down’s hopes this will eventually lead to the end of the programme, but what if it doesn't?

“They'll be a dying breed pretty much,” says Ms Bezencon. “That will be a real shame.”

The Ministry of Health says New Zealand’s antenatal screening programme is in line with others overseas. 

But Saving Down’s says that if they can stop the programme here they can use it as a precedent to stop programmes in other countries.

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Comments

5/08/2012 1:54:05 p.m.

ANN wrote:

Let's produce people with DS to the joy of the authors !!! What are the courts? nonsense!

30/07/2012 3:55:24 p.m.

Nat wrote:

I think what people need to remember is that it is a child right from conception when should it ever be ok to kill your child... at 8weeks when it has hands feet brain forming or 12weeks, 18 weeks 35 weeks? When is it suddenly not ok to kill your child? When it's born because honestly people that is a child you are forming inside you not a bunch of cells. they have done no research on the amount of babies that are aborted that have been told they have something wrong with them when they dont. Because i would love to know that figure. I know quite a few people that have been told this and have carried on with the pregnancy and the child has had nothing wrong with it at all. Abortion is wrong and it's extremely sad to watch people make it ok in their heads.Because realistically when you hold that baby in your arms you would not just then turn around and suck it up a vacuum cleaner, chop it up or inject it to kill it.So I dont think people really think about what abortion is, they are thinking about themselves.

27/07/2012 4:21:55 p.m.

Alley wrote:

I resent people enforcing their will, opinions and choices on me and I resent my options to make informed decisions regarding my own life & what I value as important being taken away. I would not dare to force someone else to comply with what I beleive regardless of what side of this argument I sit on. Why should some group, who dont know me or my situation get to decide for me? You live your life according what you value and I wont force you to live the way I think you should - deal?

27/07/2012 8:23:55 a.m.

Rebuttal wrote:

Let me take a look at the comments supporting Downs abortion. Yes, no surprises. Let me see. First, a parent's choice to have a child does not excuse eugenics, which eliminating children because they have downs syndrome most patently is. Second, exactly why is it that people are using their emotional experiences with a child who has down syndrome in order to argue for eugenics? This really does hammer home the 'He's not perfect so I'll abort him' mentality of these people. And that isn't an insult, that's the truth And third, what sort of awful parent would say that a child who they are caring for was not worth raising? I mean come on people there would be nothing more devastating for the child to hear the words of their parents saying 'I wish I aborted you'. And all in all the most disgusting thing is that this will be considered 'progressive' by some people. No, this is reaching back in to the darkest corners of human nature, right in to the bad stuff.

26/07/2012 10:45:13 a.m.

russelle knaap wrote:

what a bloody cheek. for some older parents they are only going to have one shot at a child. How dare they. I would in all probabilty have kept the child in event it was Downs but how dare these people tell others how to live their lives.

26/07/2012 9:09:09 a.m.

Janet wrote:

medical intervention in pregnancy needs a complete overhaul. Life is precious, if New Zealanders respect and appreciate human life from conception the child abuse also will diminish.

26/07/2012 8:42:24 a.m.

Deb wrote:

As a parent of a child (14)with DS I feel qualified to comment. I agree that this decision should be the parent's choice and that it should be a fully informed one. I am always coming across people who say we are somehow 'blessed' to have such a 'special' daughter. We do not feel blessed. She is an absolute darling but her presence in our family is an almost daily grief and stress. These children are extra vulnerable and they are best not to come into families that aren't equipped and prepared to go the extra miles for them.

24/07/2012 12:56:49 p.m.

Sue wrote:

Nobody is stopping Mr Sullivan from rejecting to have the antenatal Down syndrome screening. However, he cannot take that choice away from parents who want to have the screening. As a taxpayer, I am quite happy for him not to take up the screening. He also have the choice of raising as many Down kids as he like to stop them from dying out. There are quite a few for adoption if he is interested.
If he believes in democracy, then let there be choices!

20/07/2012 12:21:28 p.m.

Snowdrop wrote:

I had a baby with trisomy 18 this was picked up via a nuchal scan and followed up with an amniocentesis. The whole process was extremely stressful, the amniocentesis was risky, it could have caused a miscarriage. The prognosis for a child with trisomy 18 is that she (because they are usually girls) would likely die before she was born, failing that she had a 95% chance of dying in the first month (usually in the first few hours and only a 1% chance of making it to her first year. I chose to terminate. I made a fully informed choice, I looked for success stories, I looked for a miracle cure, I did everything I could to see if there was any hope for a positive outcome. I learned everything I could about trisomy 18 and decided that termination was best as it meant being at the end of the tunnel. I am fairly certain that if the diagnosis had been Downe Syndrome, my choice would have been different. I think this "test case" is the anti abortion people targeting a vulnerable group of mothers who care deeply about their children and the choices they are faced with. I really think that perhaps they would be better focussing on the huge number of unwanted pregancies that are terminated rather than those that are terminated after an agonising choice. Unless you have walked a mile in the shoes of a mother or family who have been in this situation, you really have no idea. Those fighting to have the test withdrawn are looking at the picture with a very narrow focus. They are lucky, their angels are here on with them on earth.

19/07/2012 11:25:20 p.m.

Tommy wrote:

There are some very heartless comments in this thread. The fundamental points is this: this DS abortion program has consequences for the surviving people with down syndrome and their families, so it is wrong to say that this isn't a social issue. If there are less people with DS, the survivors will feel less part of society and less "normal" in spite of the fact that it is an inherent part of the human condition that people will be born with 21 chromosomes. Therefore, it is harder for people with DS and their families, and the program (by encouraging abortion of babies with DS and not giving families the facts rather than the stereotypes) is a form of genocide (a deliberate attack on a group of innocent human beings). Thanks goodness the UN is looking into it, it is a disgrace.