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?

No one elses business, but the woman and man who are having to think about a termination.

No. But as she points out, the new test will technically reveal ALL cases of DS. And technically 9 out of 10 of all cases will end in termination. And suddenly you've stepped into potential eradication territory. And the word "eradicate" has been used, publicly, and in the reports and research. And that raised further ethical issues. Because this isn't a disease you're getting rid of. It's a race of people.
And once you've dealt with DS, autism will be next. And the list will go on.

I support the existence of this test, and would probably chose to have it in a future pregnancy. But I understand her uncomfortableness that it might lead to people having to justify why they didn't abort their DS baby. It baffles me that people can't understand this perspective.

So you favour retaining a less safe test, which will result in some miscarriages, or pregnant women opting not to have the test, for fear of miscarriage, AGirl?

It's a race of people - no it's not.

I had this test privately after showing markers for DS at the 20week scan. A previous m/c meant I wouldn't consider an amnio. The test screens for 3 syndromes, DS being one of them. As an older mum (39) I wanted to know - to prepare- to decide- to research- an this test gave me knowledge. Knowledge and choice can NEVER be a bad thing -in my opinion. I worried about being elderly or dead and what would happen to my child? It was our choice to make a no one else's. The test should be available on the NHS and people who know they would have the baby regardless can choose to have the test or not!

GirlWithAPearlNecklace, if you are this concerned with the preservation of DS as a "race", would you change your own genetic makeup to acquire DS?

Sorry the point I was going to make is, does it stop being about choice - but the choice you actually lose is the one to keep your baby.

You can't eradicate Down's Syndrome, it's a genetic condition caused by a mutation.
I'm delighted things worked out so well for Sally Phillips but she is a wealthy actress with access to resources and assistance that many of us do not have. What happens 30 years from now when she's dead? Who looks after her son then?

Freedom of choice should be allowed.

Implementation of NIPT as a contingent test within a public sector Down’s syndrome screening programme can improve quality of care, choices for women, and overall performance within the current budget. As some women use NIPT for information only, the Down’s syndrome live birth rate may not change significantly. Future research should consider NIPT uptake and informed decision making outside of a research setting.

From the BMJ - results of the study. Also of 71 confirmed cases of DS revealed by NIPT, there were 12 live births.

So no eradication. It's pure hyperbole

girl but you pointed out accurately that it is impossible to eradicate DS. If at some point in the future, society is less shit at dealing with disability, and balance is more forth coming in the perception of disability, people might have more DS children again.

It isn't like the mitochondrial technology now being tested, that actually will eradicate the genetic problem for all future generations.

DS can't be eradicated. It's a spontaneous genetic mutation. Fewer people with DS will result in fewer adult women with DS becoming pregnant. Adult women with DS have reduced fertility but many will ovulate and can conceive and have a higher chance of a fetus with DS. However, how often do pregnancies happen? Genuine question. My impression is that many women with DS are on effective contraception and that pregnancies aren't that frequent.

So, essentially, DS usually occurs as a random event. And that won't decrease.

Because this isn't a disease you're getting rid of. It's a race of people.
I strongly disagree with that. Its generally considered unfair for people with Downs syndrome to have children, therefore they are not a race. Downs Syndrome is a genetic medical condition.

It won't be possible to eradicate DS occurring in foetuses. However if everyone had NIPT and if everyone with a positive chose to terminate, yes that would eventually eradicate DS in living people.

That is very unlikely to happen. There will still be people who choose not to test, or choose to test but not terminate. There will therefore still be living children and adults with DS.

The difference is, they will be born to people who actively chose to have a child with DS (or to take the chance of having a child with DS) rather than terminating. They will not be born to people who would have chosen to terminate if only they'd had better information.

I think that can only be a good thing.

I have a child with DS. I am also 100% pro-choice.

I have no issue with the test itself, however it must be rolled out with up to date information about what DS really means in modern society. We must be given the full picture.

I think it is unfair to judge Sally's story as being overly positive or misrepresenting family life with DS, unless you are in that situation. We are not wealthy celebrities, we don't have home help or child care, but I still identify with what she says about how your child enriches your life. I'm tired of hearing negative views about what my life must be like from people who have no idea.

It's a woman's choice, and I don't dispute that.

The medical profession need to act responsibly with care and balance however, and currently this is not the case.

No Maud. I don't. Read my posts. Tell test COULD be a good thing. In conjunction with proper information.

And yes. They are a race. www.thefreedictionary.com/race

"race1(rās)

n.

1.A group of people identified as distinct from other groups because of supposed physical or genetic traits shared by the group. Most biologists and anthropologists do not recognize race as a biologically valid classification, in part because there is more genetic variation within groups than between them.

2.A group of people united or classified together on the basis of common history, nationality, or geographic distribution:the Celtic race.

3.A genealogical line; a lineage.

4.Humans considered as a group.

5.Biology

a.A usually geographically isolated population of organisms that differs from other populations of the same species in certain heritable traits:an island race of birds.

b.A breed or strain, as of domestic animals.

6.A distinguishing or characteristic quality, such as the flavor of a wine."

as others have said, a baby with Downs isn't much different. A child with Downs can be helped and managed.

I think we need to hear more from adults with Downs or those caring for them. The stories of pain and trouble on here are coming from those times, as parents age and have a child who will never be independent.

Phillips' thoughts on that would be interesting. It may not all be kittens and sparkles in thirty years. What are her plans then?

I listened to the radio interview and got angry. She is indeed very selective about the questions she will answer.

I've just done a literature search on DS and dementia and it seems fairly ubiquitous with onset of cognitive decline beginning 35-40 years with self care skills, forgetfulness, energy and impaired understanding progressively worsening after this.

One study followed 27 adults with DS for 27 years and found that 35 was the "turning point" for cognitive decline with all subjects having dementia by the end of the study.

This is why I'd terminate, because the increased care needs would coincide with my own older age and possible physical difficulties and it would worry the hell out of me.

Did SP address this in her documentary?

Sorry - one study followed 45 adults withDS for 27 years...

Kapoww, I see what you say, but the whole "people with disabilities are enriching others' lives" discourse sometimes really grates me. Why is it their function to enrich others' lives?

My mother has Alzheimer's. I naturally read about it, and the subject of "enriching lives" comes up regularly in discussion of suicide and assisted suicide in Alzheimer's sufferers. People who don't like the notions of suicide often say things like "oh, but interaction with Alzheimer's patients can be so enriching!" And I just want to shout at them "Fuck you! My mother's suffering, the years she spent being terrified and confused, is not designed to enrich your life. Go and find enrichment somewhere else." But I don't shout as I understand that they care and mean well. But I still want to.

Autumn I completely get what you are saying. It wasn't the point I was trying to make. Of course it isn't his function to enrich my life. But he does, anyway just by being him. At point of diagnosis I didn't expect to feel that my life would be better, and yet it is. It's better than it would be without him in it.
The difference in our stories is that my son does not suffer. He is a boy who goes to school, reads, loves sport, hates homework, loves his family. There is no more suffering than any other child.
I get it though - the things people say. We get "oh I bet he's so loving", well yes but sometimes he is not!

Kapoww, yes, I get it. There are certainly differences between our cases.

Minipie has summed up my feelings.

If everyone was forced to terminate their Down's pregnancy that's wrong.

If everyone wanted to terminate their Down's pregnancy, I'm fine with that.

NIPT is being offered as an alternative to amnio in the NHS plan, not as the first line screening tool. Therefore people like Sally Phillips would not have been offered NIPT under the NHS scheme.

"this isn't a disease you're getting rid of."

You're right, it's not a disease because that implies chance of treatment and healing. It is a condition.

"It's a race of people."

No, it's not. No more than people with Klinefelter Syndrome (XXY) are a race. There are black Africans with DS, Caucasians with DS, Eskimos with DS, Chinese people with DS. They don't all stop belonging to their own races because they have an extra chromosome.

Bravo for trying to pull on people'a heartstrings by implying that abortion of fetuses with DS is akin to genocide, though. That's new.

How early can NIPT be done? Surely it makes sense to find out as soon as possible if a foetus as downs as soon as possible. An abortion at say 10 weeks is less traumatic than an abortion at 20 weeks.