A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

this is very relevant to me right now as I am currently awaiting the results of this test.

I think (as some others have said) we're focusing on the wrong thing. Rather than denying women (and their partners) the right to choose, but focusing on giving them better choices. Which for me means:

-better information and counselling in the event of prenatal diagnosis of DS

-much, much better funding and support for people with disabilities and their families, particularly disabled adults.

As an older parent a big consideration for me is that whatever I would be prepared to sacrifice to support my child, I know that I will not be there to provide that support for long into their adulthood. So I would be either burdening my existing DC with a lifetime of care responsibility, or leaving the disabled DC at the mercy of horribly inadequate state provision. These are not futures I would wish upon any child of mine.

Is SP pro life though? I thought when someone said "It should be the woman's choice." she said "I'm glad to hear you say that." I thought it was more about wanting people to consider the option of not aborting kids because they have DS more, rather than not wanting women to have the option to abort at all?

I seem to remember her saying she was in fact pro-choice in an interview somewhere, but, either way, a practicing Christian often has ideas about 'God's plan' etc, rather than viewing human events (including the occurrence of extra chromosomes) as random occurrences.

I do wish the documentary had included someone asking SP forthrightly what she actually advocated - no abortion? Termination for DS only after compulsory education about possible HF outcomes for babies born with DS?

The whole thing left a bad taste in my mouth. There is a huge difference between adorable, gentle, Ollie and parenting him with the middle-class privilege and resources to get all possible extra help in place, or that immensely cool American advocate with DS, and some of the chronically ill and vulnerable adults with DS I gave known and known of, whose elderly or unwell or poor parents struggle to look after them and worry desperately about their children outliving them. Absolutely, their life has equal value to any other life - as people who exist in the world like the rest of us, and deserve help, support and all possible consideration -- but I can't find it in my heart to judge any parent who chooses not to face that possibility.

I do think there is a film to be made about the social effects of there being far fewer babies with DS being born in terms of the implications for specialist resources, education etc - might choosing not to screen or to screen and continue with the pregnancy with a baby who has DS come to be viewed as selfish, misguided or akin to benefit scrounging? -- but this wasn't it.

And not wanting hospitals to put pressure on women to abort babies with DS

Completely biased view of what to do. Who is Sally Phillips to say what someone should and shouldn't do. Also agree that the DS children were all high functioning. Again biased view.

I so agree with the PP who said that its OK to terminate when you don't want a baby but when you know that your child has DS its not OK.

there are ethical implications to our choices, and that one of those is the possibility that DS will be eliminated. And the ethical problem with that is that it suggests that the lives of people with DS do not matter.

Sorry, but that does not follow.

How does eliminating a condition suggest that the lives of people with the condition don't matter.

Should we not have taken steps to eradicate polio because to do suggests that all the polio sufferers didn't matter?

I was logically consistent to admire FDR and still think the world would be a better place without anyone getting polio.

It is not being anti- choice to say that there are ethical implications to our choices, and that one of those is the possibility that DS will be eliminated. And the ethical problem with that is that it suggests that the lives of people with DS do not matter

^This

It's not like aborting in the case of DS causes herd vaccination against it. Ds and other chromosomal abnormalities will continue to occur regardless of whether existing cases are aborted or not. So the 'creating a perfect race' argument doesn't stand up as I relies on all parents continuing to abort all cases of chromosomal abnormality. I know plenty of people with ds and they are every bit as valuable and loved as anyone. I'm still not totally sure what my decision would be. I know there can be many additional complications along with Ds that you wouldn't necessarily know about the severity of until baby has arrived. In any case I don't know enough yet and if the situation arises DH and I will properly consider, study, understand about the possible implications and decide accordingly. Ultimately it is or should be the individual parents decision whether a pregnancy continues or not regardless of the reasons.

I can understand her point.

Wider screening will make Downs far more rare. Therefore people like her son will be even more 'different' and marginalised.

Many people in the world don't abort, surely, because they are Catholics. Perhaps I am wrong there.
I think she made a good prog about something she feels strongly about. I don't think she deserves all this criticism.
In a different society we could provide what is required to support different people with needs but we choose not to and have different priorities. It is good to debate this.

Wider screening will make Downs far more rare. Therefore people like her son will be even more 'different' and marginalised.

So we should endeavour to make sure lots of babies are born with DS so people like Sally's son will have an easier life?

That is quite an extraordinary ethical argument.

And not really a moral one when made by the parent of a child with DS.

We should be working towards people who are different not being marginalised.

But not at the expense of deliberately choosing disability for children not yet born.

No, bias does not = something I don't agree with. Bias is the lack of balanced, factual information. It's the refusal to accept that the NIPT detects more than just Downs Syndrome. It's the refusal to consider that parents have the right to know if their child will be stillborn, or miscarried late into the pregnancy, or die shortly after being born with horrific symptoms. It's the deliberate concealment of information that enables people to make an informed choice.

Complaining about the way HCPs discuss Downs Syndrome is hugely important. The way to do that is not by encouraging misinformation of your own.

Suggesting that women should be forced to continue pregnancies they don't want to prevent the eradication of Downs Syndrome doesn't sit right with me.

What happens if a woman goes for an abortion for "social reasons", but there's a high indication of DS on the scan they do beforehand? Do they force her to keep the baby because otherwise DS might be eliminated?

I worry that people will refuse NIPT testing on the basis of this programme, under the guise of being oh-so-enlightened and "I'd love a baby with Downs Syndrome anyway", because they think that's all the test detects - and then be completely sideswiped and utterly unprepared if their child has one of the more severe trisomies that aren't compatible with life.

Wider screening will make Downs far more rare.

Not necessarily. In fact, I believe the data so far suggests that the termination rate is pretty much the same rate it always was.

And screening hasn't become "wider". It's always been available to any woman who wants it. The only difference is that screening is now better: less traumatic, less invasive, less risky and more accurate.

Sally Phillips argued that more cases of Downs being detected would lead to a greater percentage of terminations. I'm not sure that's that logical conclusion, and I'm fairly sure the professor who helped develop the test said as much during the film.

Should we not have taken steps to eradicate polio because to do suggests that all the polio sufferers didn't matter?

That does't make sense as an argument. A polio vaccine was created, people with polio were not eradicated.

I have a brother who developed schizophrenia at 16 and his quality of life in the 20 years since has been questionable and my mother has since said (to me privately of course) that if she knew then what she knows now she would have terminated the pregnancy. Because of his illness, his life and her life has been very very difficult.

I certainly don't judge anyone who makes the choice but it is an ethical issue, it is the eradication of a disability.

I think the screen tests and abnormality scans are important because it gives people the choice. Each persons journey is private and personal, they should be able to make the decision what is best for them and shouldn't endure judgment for it.

A polio vaccine was created, people with polio were not eradicated.

A better test for certain chromosomal abnormalities has been developed.

People with those conditions are not being eradicated.

So it is very similar.

What is the ethical argument in favour of retaining a certain disabilities?

If there was a way to eradicate schizophrenia, what would the moral arguments be for not eradicating it?

We need to stop talking about the "eradication" of Downs like it's a possibility. It isn't. There will always be babies that are born with Downs, either because a woman refused the screening, or accepted the screening, tested positive, and proceeded with the pregnancy. That will always be the case.

And, as an aside, I personally don't see the difference between (theoretically) eradicating Downs, and eradicating any other severe or life limiting genetic condition.

But what makes Downs so special? If you know you are a carrier of cystic fibrosis, then you can have your embryos screened. If only those embryos which carry no CF gene are reimplanted, eventually we could eradicate CF.

Would anyone object to that?

DoinIt
You are missing the point.
Polio as a disease is gone due to the vaccine.
There is no DS vaccine as it is not a disease. Therefore it cannot be vaccinated against. Same with schizophrenia.

There is a difference between eradication people with conditions and eradicating diseases.

Eradicating diseases means that the people that might have contracted the disease, live but live without the disease.

Eradicating a condition means that no one with this condition is born.

Therefore these are very different

So merrygoround - cystic fibrosis is a condition. It's a fault gene. What's your argument for retaining that?

I don't know anyone with CF or indeed their families who would be petitioning parliament if there was a antenatal test to identify CF positive foetuses.

Lynda Re CF, in many ways this is similar but in many ways not at all.
With DS screening you are pregnant for a period of time, with CF you are not.

I also think CF is different because its a life limiting condition whereas DS is not always such, but it always comes with intellectual disabilities.

I completely understand why someone might screen and terminate, but its a wider ethical issue for society to consider.

With DS screening you are pregnant for a period of time, with CF you are not.

So it's really just about the involve of a woman's body?

Lynda Cross posts.

I am not arguing against termination, I might well have taken that road in the circumstances.

If all diseases/life limiting conditions could be eradicated that would be great. BUT where does it stop re intellectual disabilities.

What is deemed worthy?