Today's ruling re Down's Syndrome

[Shirazboobaloo]

Sorry to hijack AIBU for this but can someone explain this ruling to me please?

What I can't understand (from press reports) is how this has "come to this".

Who is Heidi Crowther and who are those supporting her?

I am genuinely confused but don't know where to ask

This is the new consensus statement referred to in the judgment:

www.rcog.org.uk/en/guidelines-research-services/guidelines/consensus-statement-prenatal-screening/

It looks good to me, I'd be interested in what others think. The following paragraphs are highlighted in the statement:

Some parents whose babies have been identified as having a higher chance of Down’s syndrome, Edwards’ syndrome or Patau’s syndrome, and who have decided to continue with the pregnancy, have reported being asked repeatedly if they want further diagnostic tests or an abortion.

They report having their decisions challenged and being pressured into changing their minds.

This should not happen.

Parents should have the scope to change their minds, but not be pressured into doing so – their decisions should be accepted and respected at all times.

I have read things which suggest this has been a genuine problem and I agree, this should never happen. No woman should be pressured, either to end or to continue a pregnancy.

This appears to have been the basis of the second claimant's argument in this case. She is the mother of a young child with DS (the third claimant) who argued that this pressure violated her Article 8 rights to private and family life. She's right about that but it's not clear what remedy she was seeking through this case. It has nothing to do with the remedies sought - to reduce the time limit to 24 weeks in all cases.

I remember when the 'don't screen us out' campaign was running. They denied being against NIPT as such, they said they just wanted unbiased information and better support to be provided to women before it was rolled out. On the face of it, this consensus statement, published well within the timeframe of the initial NHS roll-out, is exactly what they were campaigning for, or at least the solid start of it.

I can't find anything on their website that welcomes this statement or even makes any comment on it, it's just on to the next thing - reducing time limits.

Agreed Langcleg.
Give all information
Do not pressure either way

Levelling up of the age where termination is allowed - because let's be honest, it isn't going to change anything. No women is just going to have a termination at 38 weeks for the lolz

Hard no. The rarity of something isn’t an argument against this. We still need ethical guidance. Why not the point of viability?

^The absolute focus on solely "down patau Edwards" is misleading
As tho once those three ruled out you got some kind of guarantee on your fetus/baby^

No, women are not stupid.

We take the best information we can find to evaluate our risks and options. We know the available information is never complete.

No woman thinks she is guaranteed a healthy baby. Aside from the properly evidenced risks, we are constantly bombarded with new things that could maybe possibly potentially harm our babies.

We had a Harmony test at 10 weeks to rule out chromosome disabilities. My DH and I decided before we fell pregnant that we would terminate if they had DS or one of the three they test for. If we had found at out at 20 + weeks, we still would have terminated. Whilst a termination would be awful and upsetting, especially after 24w, I still wouldn't want to take the risk.

@LangClegsInSpace I think it looks good. All the normal caveats - there needs to be mandated training with time set aside to do it and funding for that. And it needs to be followed - PHE guidance around neutral language in screening has been in place for a while and often isn’t. Plus a lot of challenging biases of people (clinicians) who a) only really see people with DS when they need medical care and b) are likely to place a disproportionately high value on conventional measures of intellectual ability (I’ve definitely had to work my way out of this bucket!!)

You might be interested in this doc from DSUK which is a survey of 1400 parents of children with DS and their experiences of ante and postnatal care. Obviously not totally unbiased (but then it’s only DS organisations who are collecting this info) but a big sample size and reflective of what I’ve heard anecdotally.

downsyndromeuk.co.uk/flipbook.html

@UsedUpUsername

Levelling up of the age where termination is allowed - because let's be honest, it isn't going to change anything. No women is just going to have a termination at 38 weeks for the lolz

Hard no. The rarity of something isn’t an argument against this. We still need ethical guidance. Why not the point of viability?

The point of viability is a complex beast. What exactly do you mean - the point where a large majority or babies are born without severe and lifelong disabilities? Because that sits above 24 weeks. Or do you mean the point where they survive at all, which sits between 22 and 24 weeks, but that would force some families to live with children who have long term serious problems, with all the social and financial implications that come with that.

And beyond that of course, if you argue for a full cut-off at the point of viability you are still forcing women to give birth to babies who have long term health issues, you are still forcing women to give birth to babies who will not live.

Or alternatively we could trust women to make good decisions and behave ethically. As far as I can recall, there was one woman in the last few years who wanted a termination at 38 weeks for non-medical reasons. She was not permitted to have one because she was found to be seriously mentally ill. Let's allow the system to work. There's plenty of ethical guidance built in already.

@pointythings

* Or alternatively we could trust women to make good decisions and behave ethically*

Oh go on, let’s do this

@UsedUpUsername

Levelling up of the age where termination is allowed - because let's be honest, it isn't going to change anything. No women is just going to have a termination at 38 weeks for the lolz

Hard no. The rarity of something isn’t an argument against this. We still need ethical guidance. Why not the point of viability?

Ethical guidance is fine. That's not the same as having a strict cut-off date. There's nothing ethical about that.

You say 'hard no', I say 'hard cases' - the circumstances of the tiny number of women and girls seeking late abortion for non-medical reasons are harrowing.

If this child's pregnancy had been known about earlier, but after 24 weeks, do you think she should have been denied an abortion?

www.thesun.co.uk/news/15404373/girl-11-gives-birth-britains-youngest-mum/

'Why not the point of viability?'

Because this has nothing to do with the rights of the woman, who is the person subject to the law.

Because viability is not a 'point', it's a percentage chance of survival which has nothing to say about the amount of intervention a baby in the lucky half of the percentage needs to survive and nothing to say about the likely quality of life or continuing care they may need.

Because technological advances are likely to push 'viability' progressively earlier and each time this happens, women's reproductive rights will be further curtailed.

Just to clarify: Harmony IS NIPT as is Panorama. They are brand names essentially. NIPT is just non invasive prenatal testing (cell free fetal dna testing) so you are looking at fetal dna in mum’s blood. It’s used for other conditions by genetics departments and there are studies looking at using it for other conditions that you can currently only diagnose by CVS/Amnio.

The ‘accuracy’ isn’t straightforward. It’s most accurate for trisomy 21 and less so for T13 and T18; it is most accurate in the cohort of women who have had a high chance combined screening or quadruple test before opting for NIPT (ie there are fewer false positives or negatives) compared with the general pregnant population.

It’s a useful tool- as it’s more accurate for women with a high chance initial screen so it gives a bit more information. But it isn’t diagnostic. However if you have been TTC for years, the NT is low and your chance is 1:125 then it is just that bit more accurate to help you make that decision to go for diagnostic testing or not.

I firmly agree that if a woman has said she is committed to continuing the pregnancy she should be supported in that- and that means not ‘offering’ termination at later gestations. No matter if the outcome is inevitable that the baby will die. It’s the woman’s choice.

And that means it’s still got to be the woman’s choice if she wants to have a baby AT ALL.

Thanks Mjf, I'll have a proper read in the morning.

Ethical guidance is fine. That's not the same as having a strict cut-off date. There's nothing ethical about that

Why don’t you think it’s ethical? The point is to give a time when we can start to consider the fetus. Viability is the obvious point to do this.

You say 'hard no', I say 'hard cases' - the circumstances of the tiny number of women and girls seeking late abortion for non-medical reasons are harrowing

After 24 weeks (actually a bit before), the way to extract a fetus would be harrowing in any case. You know it and I know it. Giving birth to a dead fetus is preferable how?

*If this child's pregnancy had been known about earlier, but after 24 weeks, do you think she should have been denied an abortion?

Do you think a late-term abortion would really take all her trauma away? It’s a grim business however you slice it and one route is not obviously better than the other. Hard cases are not magically solved this way—I could throw back cases where the child never knew she was pregnant until someone took her to hospital.

Because this has nothing to do with the rights of the woman, who is the person subject to the law

And here we have it. You don’t believe in giving the fetus some rights at 24 weeks (how Roe v Wade balanced things) so we are clearly not going to see eye to eye here.

Because viability is not a 'point', it's a percentage chance of survival which has nothing to say about the amount of intervention a baby in the lucky half of the percentage needs to survive and nothing to say about the likely quality of life or continuing care they may need

I don’t see how this contributes. The point is that this is around the point a fetus can survive outside the womb. It’s an arbitrary point, but is useful when setting protections for the fetus.

And as you may be aware, 24 weeks is actually quite late among Western European countries, where the limit is around 12-16 weeks for healthy fetuses.

It’s not a suitable norm for the UK (nor the US) due to social reasons, much more endemic poverty for example.

Because technological advances are likely to push 'viability' progressively earlier and each time this happens, women's reproductive rights will be further curtailed

The 24 week limit was set by Roe v Wade in the 70s and technological advances has not changed this, so I think this fear is unfounded tbh

UsedUpUsername
Terminations just before 24 weeks, as in 23+5 don't necessarily mean the woman has to give birth.
It can be done under general anesthesia.

And as you may be aware, 24 weeks is actually quite late among Western European countries, where the limit is around 12-16 weeks for healthy fetuses.

What's the limit in Europe where the mothers life is at stake?

I don't believe in forcing women to have abortions - as they once did in China - or of, in effect, forcing them to have their babies adopted - which was common practice in the 50's - as was denying women contraception. I also don't believe in making women go through a pregnancy and labour when they do not, for whatever reason, feel able to, or want to, do it. They are all examples of the state taking control of a woman's body, to the possible detriment of her health and mental well being.

Why are you talking about US law, UsedUp? There's a good potted history of UK law in the judgment. The time limit in the UK has nothing to do with Roe V Wade.

I think we should be giving anything based on US law a very hard swerve, given how that's working out.

My last pregnancy was 10 years ago, then it was a scan (?? Fold) and blood test. Is what is offered now different?

I didn't have it, at the time the NHS literature said if you wouldn't have invasive testing don't have the non invasive. Also (imo) a risk number is still fairly meaningless. I did however have a separate and specific heart scan with all three, that would probably have been a better indicator of any possible issues.

@Whitefire I think I had more blood tests with my 4 yo than I did with my 10yo.
They definitely did bloods, for spina bifida, Downs, Edwards? maybe and something else, began with a P that I'd never heard off.
I don't remember get those with the first.

Two of the things were life limiting if I remember rightly.

@LangClegsInSpace

Why are you talking about US law, UsedUp? There's a good potted history of UK law in the judgment. The time limit in the UK has nothing to do with Roe V Wade.

I think we should be giving anything based on US law a very hard swerve, given how that's working out.

What is the 24-week limit based on in the UK if not viability?

@Lockdownbear

And as you may be aware, 24 weeks is actually quite late among Western European countries, where the limit is around 12-16 weeks for healthy fetuses.

What's the limit in Europe where the mothers life is at stake?

It of course varies, but it’s generally extended for physical/mental health. A poke around here on various barriers to access in Europe can be found s here: europeabortionaccessproject.org/

The problem with giving a foetus personhood after 'viability' is that it has horrific unintended consequences for the woman. This has already happened in the US - look up the case of Marshae Jones. Women who have late miscarriages will end up under scrutiny at the most horrific time in their lives - did she do something to induce it? Did she exercise too much or otherwise engage in risky behaviour? That's where the personhood option takes us and it must never happen.

@pointythings

The problem with giving a foetus personhood after 'viability' is that it has horrific unintended consequences for the woman. This has already happened in the US - look up the case of Marshae Jones. Women who have late miscarriages will end up under scrutiny at the most horrific time in their lives - did she do something to induce it? Did she exercise too much or otherwise engage in risky behaviour? That's where the personhood option takes us and it must never happen.

So the Marshae Jones case is weird all right. She was shot in the stomach by another woman during some sort of altercation.

Ordinarily her shooter would be jailed for killing her unborn child. But they couldn’t prosecute the shooter because of ‘Stand Your Ground’ laws and moved to indict Marshae instead. Thankfully it was dismissed. Fodder in America’s culture wars, sadly.

I understand your point but I don’t think giving the fetus zero rights is the answer. Obviously you feel differently.

You say never to ‘personhood’ but the fetus already has some rights and considerations according to most legal systems. Its not something that will happen, it’s already happened.

You want to change the status quo, basically.

@UsedUpUsername

Levelling up of the age where termination is allowed - because let's be honest, it isn't going to change anything. No women is just going to have a termination at 38 weeks for the lolz

Hard no. The rarity of something isn’t an argument against this. We still need ethical guidance. Why not the point of viability?

My personal view is that rather than termination on demand at any gestation, we should have termination on demand until (for example) 28 weeks, and induction on demand thereafter. At this point there is a very good chance of the baby surviving without major health issues, and finding a home for them shouldn’t be too difficult as there is huge demand to adopt small heathy babies.

I would keep the law in place with regards to babies with disabilities however, purely because there simply isn’t the demand to adopt them and they are less physically robust to endure a premature birth.

Is this unfair? Yes. Is it the compassionate option? Yes. I would rather take an uncomfortable stance that actually leads to better outcomes than assuage my own conscience and turn a blind eye to how it actually affects people.

My personal view is that rather than termination on demand at any gestation, we should have termination on demand until (for example) 28 weeks, and induction on demand thereafter. At this point there is a very good chance of the baby surviving without major health issues, and finding a home for them shouldn’t be too difficult as there is huge demand to adopt small heathy babies

Iirc wasn’t the limit in the UK a bit later after it was first decriminalised? I want to say it was around the 26 week mark?

[quote Lockdownbear]@Whitefire I think I had more blood tests with my 4 yo than I did with my 10yo.
They definitely did bloods, for spina bifida, Downs, Edwards? maybe and something else, began with a P that I'd never heard off.
I don't remember get those with the first.

Two of the things were life limiting if I remember rightly.[/quote]
Patau and Edwards are trisomies
Babies rarely live beyond 12 months

Down syndrome highly variable and can live to 60s and be one cbeebies presenter...but wide variation in presentation