To think a test for downs that is nearly 100% accurate will not result in more terminations

[PlayOnWurtz]

I'm getting increasingly annoyed with Sally Philips at the moment and her insistence testing for downs syndrome is a negative thing and that living with someone with downs syndrome is a wholly positive experience.

Whatever happened to choice? Who is she to lay the guilt trip on people? Why is it seen as shameful to say "I would not be able to raise a person with significant health and learning disabilities" and seen as a negative decision made on a whim rather than a decision made with consideration and thought and heartache?

I'm all for having as much information as possible - knowledge is power. If this can be gained in a non-invasive manner all the better. I don't see why someone would deliberately choose not to know tbh.

I am pro choice that means I support women's CHOICE to have the tests or not to have them, to continue with the pregnancy or to terminate and to have the choice not to be told what they are doing is wrong but to be supported with their CHOICE.

I had the nhs tests at the start of September, I disagreed with NHS telling me I was low risk as the numbers they provided me with are high risk in other industries, I had the NIPT test and knew what I would do if the results were positive for chromosome disorders, what astonished me was how much some friends who say their are pro choice told me what I would be doing (nothing as it turns out and that it was only to prepare us for life after baby was born) but my very religious (and anti choice) friend told me I don't support termination but I respect your gviews and I will be there for you whatever you decide to do.

I have a close family member with downs and life for their parents is not the bed of roses the propaganda would have you believe, he has autism, is 25 in nappies, can't feed himself, his siblings have given up any prospect of a decent career and education to stay at home and support their elderly parents, this is not a choice I would make for my son.

Having a miscarriage is an awful experience and I am sure that all pro life and pro choice people would agree. At best a miscarriage is someone's dream being shattered And at worse religious person would consider a miscarriage to be the death of a baby.

The new test will mean that animo testing is no longer done. Nationally there will be fewer miscarriages. Even if more Down's babies are aborted overall the number of pregnancies that end will be less. Why are pro life people for anti animo testing when it results in so many miscarriages? Surely the number of foetuses lost from miscarriage is higher than the number of Down's babies conceived.

ohgoodlord I totally agree with that, I am not anti abortion, but parents should be given as much information as possible, and not be railroaded into termination by the medical profession if that is what they do not want. I have worked with adults with profound disabilities, who are in nappies and need 24/7 care, if I found out the baby I was carrying would be in such condition, I would terminate! As I said like ASD, DS seems to be on a spectrum, you have some who can live independent lives, who go to work, college, school. I have even heard of a couple of people with DS driving cars, but on the other hand you can get those who need 24/7 care, who will never lead such lives. There is no testing to see where on the spectrum they fall. Its armed with information such as this, that one has to make a decision.

I admire Katie Price for her honesty and candour. Id much rather she had done a programme like this I had the same thought. KP does not sentimentalise Harvey's condition. She says she works hard so she can provide for his future. SP came across really badly. The beginning sequence typified the whole thing. Everybody squirting paint everywhere. Such fun.
I hope that woman who talked about her termination does not get hate mail. Old smug face sitting there crying. All round appalling.

Aeroflotgirl, I don't think we have to worry about the coming of the perfect world. There will always be shit in the world, it's just in the nature of people - murder, rape, pillage, hunger, new diseases (bastard microbes evolve too!) and really bad TV. I think we are closer to establishing a metropolis on Pluto than to a world without disability. For every condition like Downs that has fairly clear genetic markers there are hundreds that depend on a very complex interaction between both genes and the environment and thus are not so easily detected. We are just too complex as biological and social organisms to be fully assessed through genetic screening.

Perhaps this is a little bit raw for me, but I was also appalled at Sally's glib mock-up of an amniocentesis procedure using a pear in a bag of water and a knitting needle, or whatever it was. I found it utterly distasteful and I must admit I lost respect for her even based on that alone, and let's not even go there on the interview with the lady who had been through the traumatic ordeal of a medical termination.

We recently received a high risk combined screening result. I would have done anything, paid anything, to avoid any invasive procedure going anywhere near my little one, and we were very fortunate that we were able to pay for NIPT. The results came back clear, our baby did not have any of the trisomies screened for. I sadly had a natural spontaneous miscarriage 4 days later, at 16 weeks. To see Sally Phillips waving a pear in a bag of water around (I presume) in a bid to frighten women out of invasive procedures is absolutely disgusting. They are by and large extremely safe these days, but how would you feel watching that if you were choosing to have one this week? Or if you were in the 1% who had lost a baby through the procedure? I lost my baby even though I chose not to have an amnio, so the thought of going through one in future frightens me very much. To make light of some of the harrowing decisions women have to make just because you didn't make them, and you don't agree with them, is totally disrespectful in my opinion.

I guess one of the issues here is that families who have a child with DS will find it difficult not to be biased, they aren't talking about a foetus, they are they are talking about their son or daughter and no matter how disabled your child is, you love them deeply and will did it difficult to be objective.

I'm getting riled now.
The ignorance in this thread is mind blowing.
You think Sally Phillips is biased? Want to know what happened to the BBCs policy of unbiased reporting?
Welcome to the world of having a child who is different. Try putting the boot on the other foot for a while. Because the crap in this thread is just a normal day for us.
This documentary doesn't even scratch the surface. As for unbiased reporting? You're living in cloud cuckoo land if you think that's been the case for a very long time, and not just about DS!
As for the rest of the speculation about the downside of Downs, I pity any of you having children. Because I've raised 2 "normal" children too. And it isn't a walk in the park. Take a look around you. I think you'll find that there's way more chance that YOUR child will grow up to be violent, antisocial, or a sex pest than mine will.
FYI, I'm not ANY of the things SP is accused of being. I can't afford a live in nanny, I can't afford petrol some weeks. We get no benefits, and very little official support now. My child was born with serious health issues, that were fixed by the NHS.
And you know what? My grown up kids don't give a shit about their role in her future. They were integral to the decision to have her in out lives.
Like I said before, you can sit on your moral high ground and speak in anecdotes, and opinions, but you'd better hope that life doesn't throw a spanner in your works.

Get riled all you want. I find it more 'riling' that people are trying to force women to carry pregnancies to term they do not want.

GirlWithAPearlNecklace, I don't think people on this thread are trying to present people with disabilities as a menace to society. They are unhappy with Sally Phillips's documentary because it brushes a lot of difficulties associated with DS under the carpet, which is also not fair as the presentation of DS as unproblematic can lead to people thinking that children with DS don't need any special support. Sally Phillips's presentation can help perpetuate the world where families with DS children and adults with DS don't have enough money for petrol, don't get benefits and receive no official support.

Why are pro life people for anti animo testing when it results in so many miscarriages? Surely the number of foetuses lost from miscarriage is higher than the number of Down's babies conceived.

I assume because it carries a risk and prevents people taking the test. A less invasive and less risky test will be more appealing. So in short their argument is about fear, bullying and control.

Quite Dylan.

The point is that if YOU want to go ahead with a pregnancy regardless of disability you have every right to do so, but to in effect force others to do so - and to use your own children as a means to shut down debate - is wrong.

I found Sally Phillips's programme interesting but quite irritating at times. I could have done with more footage of the interviews with people like Jane Fisher and Lynne Chitty and less of Sally saying "Iceland has lots of ice" or demonstrating an amniocentesis with a pear in a bag. It's great to see people with Down's who are doing well in life, but it would have also been interesting to have an interview with a parent of a "lower-functioning" DS child and/or a middle-aged person with DS, to see what kind of care in the community is offered to them if their parents are elderly or have died.

I expect the rates of termination for Down's are currently high because people who say they wouldn't terminate are unlikely to go for the amniocentesis given the risk of miscarriage. I don't understand why people are opposing a safe, non-invasive and accurate test that would allow women to terminate relatively early in pregnancy, if they wish to do so (for Down's or other reasons), or to continue with the pregnancy but with time to prepare themselves for having a child with DS. There are also likely to be more Down's conceptions in the first place given that more older women are having children.

If Sally stuck to spreading the word about her experience (and it is just her experience, and won't necessarily reflect other people's) of having a son with Down's syndrome, or wanted to campaign for better care and opportunities for people with Down's, I wouldn't have a problem with that. I do object to her apparent stance that women only terminate because they have the wrong impression of Down's or that the test amounts to eugenics.

I have a friend (grew up with her so have seen how hard it's been) with an older brother with DS.

He is not the happy, smiley, "can do anything he sets his mind too" idea that is often portrayed of those with DS.

He has multiple health problems, is non communicative and extremely aggressive and has been physically aggressive.

She has grown up always coming second, to being alone in her bedroom (because it was easier to keep her away from him then him away from her) for hours, to never being allowed friends around, to constantly being unable to go out i case she was needed when he had an outburst, she's been hurt by him, ignored, seen her parents desperate and pleading for help from people and authorities and no one has helped, at 28 she still lives at home because her parents are now in their 60s and are struggling

she would desperately love her own children but is too scared to risk having a child with DS and she knows that at some point, she will become his carer and doesn't want to subject her children to the same experiences she had growing up.

Her parents are wonderful, kind, generous people but they are broken ,they are desperate and they are so sad. They are not in great health themselves and spend every day terrified of what will happen to him when they die, each scared they will die first leaving the other to cope on their own.

They both agree they if this test was available 30y ago, they would've terminated the pregnancy and even more now they know what they know

They love him, he is they're son but This is no way for people to live

Why are pro life people for anti animo testing when it results in so many miscarriages? Surely the number of foetuses lost from miscarriage is higher than the number of Down's babies conceived.
If you research the background of NIPT there's a report released by the researchers with projected figures in it.
It says that the average number of pg lost per annum through miscarriage caused by amniocentesis is 28. The number of extra babies who will be screened as having DS will be well over 200.
Statically 90% of pregnancies diagnosed with DS are terminated. 90% of 200+ is WAY over 28!

How then can we have disability acceptance on one hand, where embryos with such disabilities are being terminated

I think this is the root of Sally Phillips' concern. However, I just don't agree that there is a conflict here.

I think we can have a society where it is acceptable to want to prevent disability, which is also a society that is fully accepting of and adapted to people who are disabled.

By way of analogy: We have a vaccine against polio. That doesn't lead to poorer treatment of those who have been affected by polio. If there were no polio vaccine and polio was much more common, that wouldn't mean those affected were treated any better. We can have a society where it is acceptable to try to prevent polio, whilst also adapting to and accepting those who have been affected.

She spoke at a SPUC rally

Vile organisation. No one who was pro-choice would go near them.

This newer, safer test is a very good thing in my opinion. If a woman or a couple do not want to have a child who will need lifelong care that is their choice alone. Just as Sally Phillips made her own choice.

Jessica, we don't want anyone FORCED to do anything. We want accuracy and balance.
What people see as a biased documentary is a rebuttal of everything that is said about DS pretty much everywhere. In media, in public life, in medical situations, you get the same old facts recycled over and over. Incorrect terminology, information out of the ark.
We dont want to cover up the bad parts. We want to counter them. Sally wants to show what can be the other side. And not just for the privileged rich. You'll find the majority of us are far from it.

The point is not that babies with DS are being terminated. It WHY. Because their lives are being quantified in terms of cost. They are being weighed and measured and found wanting. Because of a whole load of possibilities that can apply to anyone.

GirlWithAPearlNecklace, but in all pregnancy terminations the lives of potential children are quantified in terms of cost. A woman who already has many children may measure her resources and calculate that they will not stretch to support another child. A very young woman at the start of her working life may calculate that she has not yet build up the resources to support a child. A woman in an abusive relationships may calculate that having a child will curtail her chances of escape.

We use the concept of "worth" everywhere. Should we cease our efforts at preventing Alzheimer's, for instance, because we should see the lives of people with this disease as just as worthwhile as the lives of those without?

But DS is not a disease.

All the media coverage I have seen of this particular test - not DS in general bit the recent coverage of NIPT- has been heavily dominated by Sally Philips and the views of those campaigning against the test.

That's my concern. This issue isn't actually about how DS is portrayed or spoken about. It's about whether the NHS should provide women with access to a safer, more accurate and earlier test for a variety of conditions which are already tested for but in a less effective way. The issues about how disabilities including DS are portrayed in the media, whether doctors give biased info or push people towards termination are all existing issues and stopping this test being introduced won't change that.

Is genetically-caused Alzheimer's not a disease? I don't know ...

I am not really trying to argue. I am just trying to say that the discussion about DS has much wider implications. It forces us to ask uncomfortable questions about measuring the worth of lives. We do such measuring all the time (let's face it, even pro-lifers do it as they clearly see the lives of fetuses as more valuable than lives of women), but we rarely reflect on it. I find the "I am pro-choice but" position quite hypocritical as it totally ignores the process of choice as what it is - the process of weighing a life. No woman terminates a pregnancy just for the hell of it. It's always a value judgement. We are weighing lives, all the time, and it would be refreshing if we engaged directly with this uncomfortable truth.