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prenatal screening for autism

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A comparison:

 

The first baby to be selected (as an embryo through genetic screening) not to carry the BRCA1 gene was born today. Had she had the faulty gene she would have been at high risk (50 - 80%) of developing breast cancer. However, genetics only accounts for a small percentage of breast cancer cases (so some similarities to the discussion about screening for autism - what can be screened for only accounts for some cases and even if the individual has a particular gene/high levels of a particular hormone it is not a 100% link to having the condition).

 

I find it very difficult to come up with an argument as to why you wouldn't want to screen to remove the BRCA1 gene and prevent possible suffering/difficulties for the individual and their loved ones. Such an argument, I believe can quite easily be transferred to many other diseases/disabilities.

 

What then, separate ASDs out in discussion - what is it about ASDs (or other conditions where we debate keeping the difference) that signify it as different from others? I think if we can debate this question we can better think about the issues.

 

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It's because breast cancer is relatively easy to diagnose, and it's therefore relatively easy to identify the gene(s) which carry a predisposition for breast cancer.

 

Autism is not a 'condition' in the same way; take ten people with a diagnosis of autism and you could have ten different causes (different for each person) for their autistic symptoms. We haven't even begun to identify autistic phenotypes clearly, so we've nothing to match with possible genotypes. Add to this people who would meet the diagnostic criteria if anyone got round to assessing them, people who wouldn't have autistic symptoms if their sensory processing problems could be addressed, the lack of longitudinal research about the developmental paths of toddlers showing early autistic symptoms etc, etc. and you have a huge muddle.

 

What we need to do is to identify the specific 'abnormalities' in each person showing autistic symptoms and track those back to possible causes. The current diagnostic criteria are so broad as to be almost meaningless - they are certainly no use in trying to work out phenotypic sub-groups. There will be sub-groups, because a variant of gene A in one person will produce similar symptoms in another person with the same variant of gene A, but we need to do some serious categorisation on our phenotypes before we can work at that level.

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A comparison:

 

The first baby to be selected (as an embryo through genetic screening) not to carry the BRCA1 gene was born today. Had she had the faulty gene she would have been at high risk (50 - 80%) of developing breast cancer. However, genetics only accounts for a small percentage of breast cancer cases (so some similarities to the discussion about screening for autism - what can be screened for only accounts for some cases and even if the individual has a particular gene/high levels of a particular hormone it is not a 100% link to having the condition).

 

I find it very difficult to come up with an argument as to why you wouldn't want to screen to remove the BRCA1 gene and prevent possible suffering/difficulties for the individual and their loved ones. Such an argument, I believe can quite easily be transferred to many other diseases/disabilities.

 

What then, separate ASDs out in discussion - what is it about ASDs (or other conditions where we debate keeping the difference) that signify it as different from others? I think if we can debate this question we can better think about the issues.

 

 

The first question I would have in regard to this case is : what happened to the other embryos and in particular to the embryo(s) carrying the defective gene? Donated to research, frozen or discarded?

Secondly, having watched my granmother dying of breast cancer but my mother-in-law beating the cancer 10 yrs later, could early detection and further advances in medicine not have spared the suffering/difficulties by the time this child would have been (if at all) affected?

Thirdly, now that the mother of this child knows to have the gene, will she be able to get life insurance (or private medical insurance)? Afterall, if the mum develops breast cancer it would be classified as a pre-existing condition that she would need to disclose (let's remember that some mortages will require life insurance).

 

I don't think the pre-natal tests are a problem per se, as they would have the potential of early 'help', but it's how the results are going to be used.

 

Just as a basic example: sex determination via scan. When I was expecting dd (15yo), the county I was in had a policy of not disclosing the sex of the child because in the past they encountered high abortion rate of girls!

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What we need to do is to identify the specific 'abnormalities' in each person showing autistic symptoms and track those back to possible causes. The current diagnostic criteria are so broad as to be almost meaningless - they are certainly no use in trying to work out phenotypic sub-groups. There will be sub-groups, because a variant of gene A in one person will produce similar symptoms in another person with the same variant of gene A, but we need to do some serious categorisation on our phenotypes before we can work at that level.

 

Just wanted to add an extra complication or two. :wacko: The same gene A could produce different phenotypes. Different genes (singly or in combination) can give rise to the same phenotype. And that's before using the extra terminology!

 

I followed your link for the Nature article,but I'm not a subscriber and the abstract is a bit skimp, do you know whether it's published elsewhere? I'd really like to know the 20 genes mapped, I'll be happy with just their names (but chromosomal location would be a bonus). Thank you.

 

 

 

 

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Just wanted to add an extra complication or two. :wacko: The same gene A could produce different phenotypes. Different genes (singly or in combination) can give rise to the same phenotype. And that's before using the extra terminology!

 

I followed your link for the Nature article,but I'm not a subscriber and the abstract is a bit skimp, do you know whether it's published elsewhere? I'd really like to know the 20 genes mapped, I'll be happy with just their names (but chromosomal location would be a bonus). Thank you.

 

There's a fuller abstract at

 

http://www.ncbi.nlm.nih.gov/pubmed/17322880

 

Well, it's glutamate, who'da thought it? (Implicated in sensory processing).

 

 

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Incidentally you don't need to subscribe. For only $32 dollars you can download it and print it off. I believe they have some very nice pictures - everyone was using them at the ARC conference!

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Incidentally you don't need to subscribe. For only $32 dollars you can download it and print it off. I believe they have some very nice pictures - everyone was using them at the ARC conference!

 

 

Thank you. For a moment there, I thought it was a review I've missed. You might enjoy this article, of course you might have already. :)

 

 

http://www.biomedcentral.com/1755-8794/1/50

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A number commented that removing the cancer gene was a very positive step (And who will argue), but carrying the gene doesn't always mean it will develop,some are dormant some not. All hearing parents carry a defective (!) deaf gene only a small percentage carry a deaf child. The difference between a cancer gene and any other is actually quite small in that the government would declare some disabilities as 'life threatening', deafness was deemed a serious and life threatening condition too, we had to really fight our corner to reverse that. It's in the lap of the parental gods really. Once identification is there, then the choice exists to carry on yes or no. In America they have long pushed for choices like this and aborted many disabilities we would be horrified to see included. There they pursue the American dream of perfection, as do the Asian continents pursue traditions of male children so abandon or abort female children. It IS happening now, so the discussions whereby people are saying it won't happen for years are way out I'm afraid ! Big countries like China/Russia have none of our sensibilities, nor 3rd world countries struggling, they will think nothing of going for the best they can in people terms. Fascism has been overtaken by sheer necessity for some. We are too complacent in the 'Western Worlds' but I suggest these choices are here now, and, America leads in taking them, as well as the UK leading in gene identification. Sad fact is, parents are NOT going to wait until they are completely assured a gene is good or 'bad', they will CHOOSE the least option of difficulty. Deaf ? Blind ? autistic ? whatever, no thanks not if I have a choice, but do they understand that choice ? or the implication of it ?

 

I Once asked on a woman's website (!) OK I can offer you a gene identification to show you may have a 'disabled' child, however, I can show an embryo that doesn't have this, which one will you opt for ?

 

79% went against the disabled child option, because the choice of an disability free embryo was there, although it was by no means certain that embryo would be totally free of other issues.... some genes take generations to 'out', some parents won't take any chance of it..

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its a more pity they can't find the despot gene the one that Hitler, Mugabee,Stalin,Aidi Amin,Saddam Hussien etc had finding those genes would be far more beneficial to humans than finding disabilits gene, i have had this discussion on the wider boards and the attitiude is if its likely to be disabled,the choice should be the parents on the information they get and and if they can choose to terminate whatever test shows up to be. There seems to be in this modern time a complete lack by a human compassion and respect for human life and its distrubing, its almost back to Roman times where humans are entertained by human suffering and differences ,the greater joe public seems only concerned with as much materail things as they can get. Family and children have to fit in with this consumerism mentality instead of complimenting it.

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I'm convinced that the tests will go ahead. The NHS may not offer them but private clinics almost certainly will unless the government stops it. However, there is nothing stopping a British woman from using the services of a test centre in another country where testing for autism is legal.

 

I remember reading about scientists identifying genes responsible for criminal behaviour in certain individuals. They think that eliminating these genes will reduce crime levels significantly. After all how many people really want to live in a world with another Jack the Ripper or 10 year old yobs with no respect for the law whatsoever. If the behaviour of these people are the result of "bad genetics" then would it be irresponsible to create any more people like them?

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Once identification is mooted, people will want to know, and then take or not action on it. Americans can be tested any time on 50 types/degrees of disability, because of patient confidentiality, we will never know how many parents act on it, reading between the lines thousands of abortions have taken place, some were because of a history of obesity, others because asthma was in the family.... You can also post off DNA and get a 'hit list' now. the listings do not guarantee complete removal of a gene at all, they simply select an embryo without one in many cases. They don't really know the effect of removing one gene on another..... The 'uncaring' attitude to life, is that many simply do not see the embryo as that, they cannot agree on when life is there or viable. It's chemistry. Parents also want complete right over their child to be as well..... some can cope fine with a severely disabled child, others cannot face it..... sadly we are not all born saints. Parents in this country routinely are tested for downs, again we have no idea how many act on it when they know. That's the problem really, via patient confidentiality, we can't get statistics, or debate the issue properly, meanwhile, claim after claim comes out they have ID'd another gene for their hit list.... God is redundant, a victim of the gene crunch....

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Does the EU have any policies on prenatal screening?

 

I'm very anti-EU myself although after discussions in AS circles it was decided that it could be a better move to restrict prenatal screening with EU legislation rather than British law.

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Does the EU have any policies on prenatal screening?

 

I'm very anti-EU myself although after discussions in AS circles it was decided that it could be a better move to restrict prenatal screening with EU legislation rather than British law.

 

God no ! Nothing good ever came out of the Euro and contributed to many problems to us in the UK, Human Rights, immigration, and Child laws were the worst aspect of the European Parliament and its nanny obsession with telling Brits how to think and behave, whilst NOT doing it themselves, I lost interest when they demanded square bananas, banned curved cucumbers...

 

[rest of post deleted by moderator]

Edited by Kathryn

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Mod hat on

 

Melow, I deleted the most xenophobic comments in your post and was very tempted to delete the whole thing as it is off topic anyway. Please bear in mind that this forum is read by many people of many nationalities and backgrounds.

 

Kathryn

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I lost interest when they demanded square bananas, banned curved cucumbers...

That is a myth. 'Straight' fruit came about as a result of supermarket demands on growers in response to customer preferences.

 

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That is a myth. 'Straight' fruit came about as a result of supermarket demands on growers in response to customer preferences.

Not so sure about that (or were you being ironic, Mumble?). A friend of mine, employed in horticulture, was once working on a project to develop a cubical apple (takes up less space for transport). Long experience suggests that 'customer demand' is actually a euphemism for 'increased profit'. [And in case any one is wondering, this is directly relevant to genetic screening in response to alleged customer demand.]

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Not so sure about that (or were you being ironic, Mumble?). A friend of mine, employed in horticulture, was once working on a project to develop a cubical apple (takes up less space for transport). Long experience suggests that 'customer demand' is actually a euphemism for 'increased profit'. [And in case any one is wondering, this is directly relevant to genetic screening in response to alleged customer demand.]

I wasn't being ironic - no energy left for that! It was on QI that I originally heard that it was a myth and many seemingly reliable sources on the Internet seem to have suggested the same, but I could be wrong. They really should develop octahedral apples if they are concerned about stacking, as not only will these be (slightly) more apple shaped, they will also stack in such a way as not to slide about in the box, particularly when the boxes are put at an angle on the supermarket shelves (which currently results in all the apples rolling to the bottom, bumping into one another and becoming bruised. :eat:

 

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And in case any one is wondering, this is directly relevant to genetic screening in response to alleged customer demand.

 

Genetic screening IS to satisfy customer demand. I'm convinced that most parents with little knowledge of ASD would much rather have happy but conventional children who are popular at school, than geniuses who are unhappy or troublesome to deal with. Dare I say this applies to some parents here - no names mentioned.

 

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I wasn't being ironic - no energy left for that! It was on QI that I originally heard that it was a myth and many seemingly reliable sources on the Internet seem to have suggested the same, but I could be wrong. They really should develop octahedral apples if they are concerned about stacking, as not only will these be (slightly) more apple shaped, they will also stack in such a way as not to slide about in the box, particularly when the boxes are put at an angle on the supermarket shelves (which currently results in all the apples rolling to the bottom, bumping into one another and becoming bruised. :eat:

Have you missed your vocation, perhaps? :lol:

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Genetic screening IS to satisfy customer demand. I'm convinced that most parents with little knowledge of ASD would much rather have happy but conventional children who are popular at school, than geniuses who are unhappy or troublesome to deal with. Dare I say this applies to some parents here - no names mentioned.

 

I don't know many conventional children so I am not sure where you get the measure of ''most parents ''.All children in my experience are individuals .Most children are unconventional at one time or another....if at no other time it is part of normal teenage development to be unconventional.I am also not sure where you get the idea that happiness at school and being ''conventional'' go together.As far as being well functioning in school terms and abiding by the rules are concerned myself,my other half and my elder son would all fit the criteria very well.We were all desperately unhappy at school at one time or another .Karen.

 

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Mod hat on

 

Melow, I deleted the most xenophobic comments in your post and was very tempted to delete the whole thing as it is off topic anyway. Please bear in mind that this forum is read by many people of many nationalities and backgrounds.

 

Kathryn

 

It's a pity you see it like that. I was recounting facts from the media, we shall have to correct them then. I didn't think it off topic, since the comment I responded too, suggested the Euros could legislate against the British in the genetic issue. Personally I think they have interfered enough (The parliament mostly), and drew up examples where I felt (And a LOT of other British do), they were too incompetent to do so.

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God no ! Nothing good ever came out of the Euro and contributed to many problems to us in the UK, Human Rights, immigration, and Child laws were the worst aspect of the European Parliament and its nanny obsession with telling Brits how to think and behave, whilst NOT doing it themselves, I lost interest when they demanded square bananas, banned curved cucumbers...

 

[rest of post deleted by moderator]

I don't understand why you would think it is pity that a mod - or anyone - would take objection to comments such as this. I certainly do.

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God no ! Nothing good ever came out of the Euro and contributed to many problems to us in the UK, Human Rights, immigration, and Child laws were the worst aspect of the European Parliament and its nanny obsession with telling Brits how to think and behave, whilst NOT doing it themselves, I lost interest when they demanded square bananas, banned curved cucumbers...

 

I know several adults with AS who are anti-EU but a high proportion of parents of kids with AS and people who run organisations supporting people with AS and ASD I have encountered are pro-EU (mostly without good reason IMO). This is the explanation for the consideration of using EU legislation to restrict prenatal screening.

 

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It's a pity you see it like that. I was recounting facts from the media, we shall have to correct them then. I didn't think it off topic, since the comment I responded too, suggested the Euros could legislate against the British in the genetic issue. Personally I think they have interfered enough (The parliament mostly), and drew up examples where I felt (And a LOT of other British do), they were too incompetent to do so.

 

Not just me, Melow, complaints were made by other members. The part of your post considered offensive contained sweeping and derogatory generalisations about specific countries.

 

If you want to discuss it further, I'll be happy to do so via pm - this thread has been derailed enough I think.

 

I think both you and Canopus have made your points about the EU - now can we please get back to the topic of prenatal screening?

 

Kathryn

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I know several adults with AS who are anti-EU but a high proportion of parents of kids with AS and people who run organisations supporting people with AS and ASD I have encountered are pro-EU (mostly without good reason IMO). This is the explanation for the consideration of using EU legislation to restrict prenatal screening.

 

I suspect it's more complicated than that. The World Trade Organisation has an explicit agenda of liberalising global exchange of goods and services. This market-driven model (which the EU, and thus the UK has signed up to) would mean that if 'customers' wanted genetic screening for their unborn children, and someone was offering it, the genetic screening industry would be driven by customer demand. This puts governments into a quandary because they also want to be popular with voters and a lot of voters are uneasy about tinkering with genes. Personally, I think genetic testing will be inevitable, but that it should be regulated according to whether or not the outcomes are desirable for the whole population, now and in the future, not by 'customer demand'.

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I suspect it's more complicated than that. The World Trade Organisation has an explicit agenda of liberalising global exchange of goods and services. This market-driven model (which the EU, and thus the UK has signed up to) would mean that if 'customers' wanted genetic screening for their unborn children, and someone was offering it, the genetic screening industry would be driven by customer demand. This puts governments into a quandary because they also want to be popular with voters and a lot of voters are uneasy about tinkering with genes. Personally, I think genetic testing will be inevitable, but that it should be regulated according to whether or not the outcomes are desirable for the whole population, now and in the future, not by 'customer demand'.

 

I believe the World Trade Organisation is pushing for the privatisation of the NHS because it acts as a roadblock for establishing large scale private (and foreign owned) healthcare providers in Britain.

 

Very few people know about the World Trade Organisation but it is a dangerous development that transfers power and authority from democratically(!) elected governments to unaccountable corporations and global finance houses.

 

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I believe the World Trade Organisation is pushing for the privatisation of the NHS because it acts as a roadblock for establishing large scale private (and foreign owned) healthcare providers in Britain.

 

Very few people know about the World Trade Organisation but it is a dangerous development that transfers power and authority from democratically(!) elected governments to unaccountable corporations and global finance houses.

 

 

Game, set and Euro match I think... no-one is going to tell parents what to do about their child's genes, and no-one is going to accept legislation to that effect either. Least of all from a foreign country and system.

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I believe the World Trade Organisation is pushing for the privatisation of the NHS because it acts as a roadblock for establishing large scale private (and foreign owned) healthcare providers in Britain.

 

Very few people know about the World Trade Organisation but it is a dangerous development that transfers power and authority from democratically(!) elected governments to unaccountable corporations and global finance houses.

 

I wrote to my Euro MP asking how I could find out more about the Lisbon Treaty and how it linked in with the WTO's agenda - didn't expect him to tell me, just to tell me where I could find out. He didn't know, and referred me to the relevant government department!!! You couldn't make it up. Maybe the credit crunch will make them stop and think about what they are doing - but frankly I doubt it.

 

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:offtopic:

 

Can we get back to the original subject of this thread please? :)

 

 

K x

 

 

I understand what you mean Kathryn, but this is relevant and it's important other posters understand why certain services might be difficult to access and others might be readily available. My son's audiologist cannot test him for CAPD not because he doesn't know how to, but because the protocols haven't been finalised yet. Using the same protocols throughout the NHS is not just an attempt to iron out the postcode lottery but to eventually ensure standardised treatments across Europe, because the free movement of workers is a tenet of the EU. Just trying to give some background. :)

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Hi Coolblue

 

Another big subject in itself, and definitely worthy of discussion here. Feel free to start a new thread. :)

 

K x

 

 

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Can I just remind everyone that this is not the correct forum if you want to have a political discussion. There are plenty of political forums on the internet, I suggest anyone wishing to discuss the merits or otherwise of the EU or the World Trade Organisation discusses the issues there.

 

I am sorry if this sounds dictatorial but this sort of political discussion makes many members here very uncomfortable. Any further postings that are not directly relevant to the topic in hand will be deleted without further warning.

 

Simon

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Part of the problem is that very few (would be) parents know a thing about ASD unless they know people with the condition. They get most of their information about ASD from the media and the recent Daily Mail article doesn't help us one bit. This will probably result in a much higher rate of terminations for positive prenatal tests for ASD than if the public had a better understanding of ASD.

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Part of the problem is that very few (would be) parents know a thing about ASD unless they know people with the condition. They get most of their information about ASD from the media and the recent Daily Mail article doesn't help us one bit. This will probably result in a much higher rate of terminations for positive prenatal tests for ASD than if the public had a better understanding of ASD.

 

I think that with current genetic screening that is offered it is not undertaken lightly.There are protocols in place to ensure that parents are given enough accurate information to enable them to make an informed choice in agreeing to any tests.I would hope and expect that the same would apply with any future test for ASD.

It is possible that the need to provide parents with accurate information could lead to increased understanding of ASD.Karen.

 

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I think that with current genetic screening that is offered it is not undertaken lightly.There are protocols in place to ensure that parents are given enough accurate information to enable them to make an informed choice in agreeing to any tests.I would hope and expect that the same would apply with any future test for ASD.

It is possible that the need to provide parents with accurate information could lead to increased understanding of ASD.Karen.

 

I cast doubts over this. It takes much time and effort to fully understand ASD and having a misinforming media makes things worse.

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Simin Baron-Cohen has apparently been misrepresented in the media(again) and responds here: http://www.communitycare.co.uk/Articles/20...not-cancer.html

 

I have a lot of respect for SBC; he has done some interesting work and has worked tirelessly to keep autism research on the public agenda. However, research by Kate Plaisted and Laurent Mottron (referred to in LizK's link) is far more rigorous, IMO, and consequently is much less likely to catch the eye of the news media, because it doesn't translate well into sound-bites. Well worth looking at via Google scholar, if you're interested.

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