Children are being born with severe genetic abnormalities because their parents are being refused funding to screen their embryos, those working in the field have claimed.
Fairer provision of pre-implantation genetic diagnosis (PGD) - in which embryos can be screened for a particular abnormality - could also mean fewer abortions when problems are picked up further down the line, experts from the Assisted Conception Unit at Guy's Hospital say.
The new, fully integrated IVF and PGD centre in London opens on Thursday and will serve couples from across the UK who want to ensure their baby does not carry a potentially life-threatening inherited condition - from cystic fibrosis to some forms of early onset cancer.
But a "postcode lottery" means many parents who would like to use the service cannot necessarily get their local primary care trust to put up the £7,000 needed for the treatment, according to Alison Lashwood, a consultant nurse in genetics and PGD at Guy's.
Funding decisions can take up to a year to be reached, she added.
"There is no doubt that there are couples who go ahead [and conceive naturally] and go on to have further affected children," she said.
In one case known to the centre, a couple who were refused funding despite having lost one child at birth to a severe chromosomal abnormality went on to have two other babies with exactly the same condition.
....
"We should not be in the business of making judgements about what is a life worth living and what isn't at any stage of the process," she said, adding that there were couples who would consider simply not reproducing at all if they knew themselves to be carriers of serious abnormality.
Parents 'refuse genetic tests'
Published by s.b.f on 23 April, 2009 - 12:55
Is this only in the case of IVF?
"For too long, we have been a passively tolerant society, saying to our citizens 'as long as you obey the law, we will leave you alone'" - David Cameron, UK Prime Minister. 13 May 2015.
For screening embryos for any genetic disorders that exist.
yes, but that would only be for ivf, no?
Otherwise would it not be "too late" to do anything about it?
"I know that you're kid is not born yet, and also that you can not do anything else about it, but the baby will have three eyes."
What would be the point?
"For too long, we have been a passively tolerant society, saying to our citizens 'as long as you obey the law, we will leave you alone'" - David Cameron, UK Prime Minister. 13 May 2015.
They can look and then get rid of embryos with genetic defects and insert back in the 'normal' ones.
which would only work in the case of ivf, no?
"For too long, we have been a passively tolerant society, saying to our citizens 'as long as you obey the law, we will leave you alone'" - David Cameron, UK Prime Minister. 13 May 2015.
I keep avoiding the question.
Erm..I think they can take the embryo out after its been formed, can't they? And then insert it back in?
Doesn't it mean that if people find out that there as-yet-not-fully-formed baby will have severe disabilities, they can get an abortion and try again for a healthy baby.
I've been told that this is the reason that we see very few people with Down's Syndrome nowadays.
Don't just do something! Stand there.
Unless it's ivf, its not "fiddling with the genes" as the tests will happen way after the woman finds out that she is pregnant.
Ya'qub is presenting valid concerns - things that ought to be thought about. IMO. No idea if that is why there are less down's sufferers though. I have no idea how many is "natural" and wether the current rate is above or below that.
"For too long, we have been a passively tolerant society, saying to our citizens 'as long as you obey the law, we will leave you alone'" - David Cameron, UK Prime Minister. 13 May 2015.
But someone with Down's Syndrome is pretty much promised a very short, unhappy life (don't say 'but they're always smiling'). Isn't it more cruel to the kid as well as the family to bring someone into the world who is only realistically going to live until their early twenties?
Disabilities which don't mean someone is going to die very young are different, of course.
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but then ud have to abort it and therefore killing it
"How many people find fault in what they're reading and the fault is in their own understanding" Al Mutanabbi
When exactly does it become a 'person'? You can't say killing it is 'wrong' just because it's 'alive'.
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People with Down's syndrome can live up to the grand age of fifty now but the likely chance that they have Alzheimer's disease is high.
I think aborting any embryo which has the potential to become a human being is wrong unless the mother is ill or if the child will seriously suffer (hmmm). But what about young mothers? Who people think will be unable to bring up a child at a young age? Should abortion be right for them?
No, this is not only for IVF. IVF is the process where they take the egg cell and the sperm cell and make it conceive outside the womb and then inject it back in the uterus after the fertilization. This news story applies to PGD (Preimplantation genetic diagnosis )too. This is where after the fertilisation and the embryo forms in the womb. Then it is taken out. Screened for any 'abnormal' genes. Then it is put back in the womb again. Some risks with PGD are that it can lead to miscarriages but I think that's rare.
This all reminds me of Eugenics.
What does Islam say about PGD? I'm guessing it's not allowed?
Why wouldn't it be?
Don't just do something! Stand there.
I don't know. I thought it wouldn't be, because it involves getting the embryo out of the womb?
Or because it involves 'scientific progress'?
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Why would it involving scientific progress, make it wrong?
Because a lot of Muslims seem scared of it. The point is it wouldn't make it wrong, but... oh, never mind.
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No..carry on? I want to know what the point is.
People (non-muslims too) are generally afraid of it because they associate it with gender selection too i.e choosing what sex your child is born. This potentially what it could lead to in the future. That's one argument against it.
No one has mentioned the fact that aborting a baby after 120 days is completely forbidden in Islam, regardless of abnormalities. There would have to be a dire case like the mothers life being at risk, or the child having a very dangerous life threatening abnormality. So downs syndrome wouldn't come anywhere near this "exception" list.
I remember the midwife asking me if i want the tests done on my foetus at some stage to test for downs and other abnormalities, but i refused only because i knew there was no choice for me, Allah had decided. I was a little scared, but even with tests only Allah really knows what is in the womb, science and technology can't foresee every problem.
“O my people! Truly, this life of the world is nothing but a (quick passing) enjoyment, and verily, the hereafter that is the home that will remain forever.” [Ghafir : 39]
I didn't realize that there was a exact number of days within which the abortion was clearly wrong to carry out. 120 days is about 4 months. So before 4 months of time..it's okay to have an abortion?
I like the last sentence of your paragraph.
Down's Syndrome is pretty much a very dangerous life threatening abnormality.
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Why is it?
no even then there are exceptions. Depending on what school of thought you follow it differs, kind of complicated.
“O my people! Truly, this life of the world is nothing but a (quick passing) enjoyment, and verily, the hereafter that is the home that will remain forever.” [Ghafir : 39]
Cos the life expectancy is really short, and its a very painful degenerative disease (I may be completely wrong, you probably know better).
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Thanks for that.
I don't know better. Generally they do get more ill as they get older and they require more help and attention. Their mental age is lower too. But I don't know about the painful bit.
Life is a life threatening illness. Having life means that you will eventually die.
fwiw, I have absolutely no idea how hard the life of a downs sufferer is.
But one thing to consider is what if within the life of that child some medication is brought to market that vastly relieves some of the problems? Of course the chances of discovering something that reverses damages is minute...
and then there is the question of where do you draw the line? Do you go all 300 on the fetus? Once again this reminds me of the film Gattaca - those that watch films, please watch it.
As for when is the latest for allowed abortion in Islam (under special conditions) - no idea, but I know there is a hadith that mentions when the sould is blown into the fetus, so that would be a good cut of point. However I had thought that to be 40 days, not 120...
"For too long, we have been a passively tolerant society, saying to our citizens 'as long as you obey the law, we will leave you alone'" - David Cameron, UK Prime Minister. 13 May 2015.
I can't find anything on Islam and PGD. :S
no brother that's actually a myth life expentancy can be up to 60 yrs of age. ppl with downs can live a fulfilling life albeit with assistance. They have learning difficulties, but many nowadays go on to achieve GCSES,Alevels. Some even work, and live independently in specially designed apartments.
I haven't got a downs syndrome child but I know a woman who has. Even with all the sacrifices, and hardships she would never say i wish i had aborted this child. The child is like any other child, but physically she stands out because of the characteristic eyes that downs babies often have. She has learning difficulties, but she is an exceptionally happy child, and the happiness she has bought to the family cannot be denied. In islam it is a grave sin, tantamount to murder for aborting a foetus with downs.
“O my people! Truly, this life of the world is nothing but a (quick passing) enjoyment, and verily, the hereafter that is the home that will remain forever.” [Ghafir : 39]
Are you seriously suggesting allowing a severely disabled child to be born, merely to treat them as a guinea pig?
(I know you're not suggesting that at all, but it asks an interesting question: why not do that?)
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It is? Really? Have you got any evidence for that?
What about the morning after pill?
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