a new super race?

[rosieglo]

Re the article in the guardian about the baby that was successfully screened for the breast cancer gene and the controversy about 'designer babies' - what's the fuss? I'm thinking that breeding out illness and disabilty is a great thing. Improving intelligence also; hopefully the smarter the future generations are the more likely they will find ways to halt our destruction of the planet and stop fighting. What's wrong with wanting fitter, stronger, cleverer and healthier children? And I think it is so wrong for a deaf or blind parent to actively seek out a way to pass their disability on, I cannot begin to understand how they could want to deprive their child of the ability to hear music or see the world around them.
hmmn - for me it's a pretty straight forward matter.

Oh jute! your son is beautiful! Looking at your video, he is just another little boy who happens to experience the world differently.

Yes gorionine - it can be like that. Not to downplay severe autism- it is challenging for everyone dealing with it - every single day (the video 'autism every day' which is pretty controversial with some - does imo give an accurate picture of severe autism - it shows it how it is).

However, I have noticed that often people talk about individuals with severe autism/LD's as if they are somehow less human or less important or have less substances. I call it the vegetablisation of these kids/adults. And I guess its that I wanted to challenge with the video. The world can be a difficult and confusing place for him, but with help he can have an experience filled life. And given those opportunities he enjoys them as much and in the same way as any other child.

Which is my problem with the OP really. No thanks I don't want a more intelligent child or whatever else it was that was being suggested.

And anyway how do you judge 'clever' (from the OP about what's wrong with wanting cleverer children - quite a bit imo). Ds1 with severe learning difficulties can do things I can't do - his mind works in a totally different way. The things that he can do are outstanding (mainly involving memory). They're probably a side effect of his disability (ie wouldn't exist if he wasn't disabled).

Jute, what a wonderful video.

jute - Your DS looks lovely

If you had the chance to screen for autism in your next pregnancy, would you do it?

agree with jute (have seen your video before, but always enjoy watching it - I hope dd1 can access as many things in the future )

dd1's biggest problem is the rest of the world. she is mostly happy in herself.

she sees things differently form me, but not necessarily in a worse way.

she hears things very differently (very acute hearing - at the weekend we were in a shopping centre, and as we came out of one shop she started having a huge meltdown. we changed direction (incidental) and she calmed down. changed our minds again ([blush - we really help her, don't we?]) and went back the original way. she freaked out again. we got on the escalator, and halfway down, it became apparent that there was the worst grinding/squeaking noise ever. which she had heard over the general noise of the shopping centre (huge place, very busy). i hadn't heard it, and i have very acute hearing myself) but again, that's not necessarily a bad thing.

she has the most phenomenol memory.

her main problems stem from people outside the family not understanding or letting her be.

so she gets nice little old ladies in supermarkets talking to her, and persisting in talking to her even if it upsets her (which it does).

she gets people tutting and muttering if she has a meltdown because she is scared of something, rather than helping her remedy the situation.

she has come an awfully long way in her short life, and I hope she continues to be happy, but I do worry about a world where people would eb happy to screen her out - how is that going to help the outside world understand her more? how is that going to help her get the help she needs?

i do not want a cleverer child, or a brighter, fitter, healthier - whatever word you want to put on it, really.

i will not screen for autism in my next pregnancy. But then i don't have any other testing either.

d'oh! Obv will not screen for autism as not available - but I wouldn't even it it were available...

BNut if Jute they were for example able to give you a pill in pregnancy or say avoid XYZ or could do a simple operation to change genes in teh womb or whatever then surely most people with a child with problems would prefer them not to have them. My very mildly dyslexic daughter I think she would have found her life easier without that. She has PCOS too. I am sure if I could have done something to get the child I have without that then I would have done. I love all 5 children and some of the issues they have if they were solvable or could never have been present I would prefer that were the case. that doesn't mean I don't love them but I would rather they didn't have something which causes them a problem.

Also although I had no screening or tests for the twins except a scan on principle, screening should be available so people can make adjustmentsb efore birth and after for children who may have special needs. Knowledge doesn't have to lead to abortion.

Cote - Jute does have two other children already.
Ok - so let see what is not narrow minded about:

"what is all the fuss about designer babies?" so where the hell does it end - what do we screen for next?

"I am thinking in breeding out illness and disability is a great thing"

again - why do you think that - no further explanation.

smarter people will find ways to protect our planet - those men who made the atom bomb which has destroyed whole ecosystems due to being tested in the pacific by the french, generations of children around Chernobyl, people affected from the bombing of hiroshima and nagasaki - those very smart people who developed the phosphorous bombs raining down on gaza?!?!?! where does it end?

"I think it is so wrong for a deaf or blind parent to actively seek out a way to pass their disability on. I cannot begin to understand that"

So - their reality is not your reality and so can you not just accept that different strokes for different folks. That is what makes up the tapestry of life.

change ill and disabled for an ethnic group and see how it sounds.

Xenia - unfortunately in terms of ds 97% of antenatal diagnoses lead to termination of pregnancy so I think it is used far less as a source of information than a reason for termination.

I have no doubt that there are very hard and moments too, what I was trying to say ( in my habitual clumsy way!) is that he is a little boy, with his personality and challenges. I did watch the "autism every day" video ( the one with several mums talking about the difficulties they are facing on a day to day basis), and with all the heartache, the money worries, the education,the strain on the parents relationship, the worries about the future, not one said "I wish I did not have this child".

I would not be able to condamn a pregnant woman who decides for her own reasons she could not cope with a desabled child but to have a "compulsary screening" NEVER.

There would always be something a bit out of the norm we would need to get rid off anyway, like: children should not be born in a family with less than £..... income. Or children should not be born from parents who arenot both working full time and so on...

Once we decide as a society that some deserve to live and other don't there will be no stopping the stupid "machine".

I've gone onto have 2 other kids cote & was rather pleased screening wasn't available. We decided that we wouldn't terminate for DS, nor would we have any invasive testing. So I can't really see that we would have terminated for severe autism had there been a test.

I think the point about putting money into prevention vs services/treatment is an important one. Services, suitable education and yes treatment for autism makes such a difference. I am currently trying to get some screening to see whether ds1 has a mitochondrial disorder (the pattern of his development pre-regression and the form his regression took, along with odd movements and some apparent sugar processing problems suggest this is a possibility). I have had confirmation from an expert in the States (the expert in the States) that testing for such a disorder is indicated, and this morning agreement from a neurologist in Cambridge that testing is indicated. Now I need to persuade my son's paediatricians. No easy task.

So point being really I think we come to this from the wrong way round for autism at least. the UK medical view of autism and LD's is that it's a hopeless situation, best never met why would anyone want to have to deal with it, lets find a way to search and destroy. My belief (living with it day in day out) is no actually, let's find a way of making the world an easier place for those with severe autism (and their families). This will involve spending more on services and opening up the medical professions eyes to the treatments which already exist.

My son has made my world a better place. Really- I know that sounds like naff guff, but he has made my life better (as have my other kids). I can only say that recently and I am not denying the very big difficulties that go with autism (with 3 nights last week spent awake through the night with him I couldn't). Because he is happy (as can be seen in the video) I can't really see a negative to his existence. His brothers love him and are growing up happy and well adjusted.

So no I can't really see the point of screening for severe autism. Would what it achieve? An alternative life which may not be happier for anyone (you'd never know). I can see more point in screening for illnesses or diseases that affect health but am uncomfortable with binning an individual to achieve that.

The more I think about this, the more I think that instead of screening out illnesses and disabilities, we should be looking for cures for the illnesses, and ways in which to help the disabled live more independent and fulfilled lives, without the prejudice that seems to go alongside disability.

At the end of the day, breast cancer is not fatal to everyone. People do recover from breast cancer, so to suggest that breast cancer should be screened out and those babies with breast cancer genes should never even be allowed to be conceived is denying life to someone who might never have died of the disease. Let's not forget that a baby born today with the breast cancer gene probably won't develop the illness for at least another 30 years, 30 years in which medicine will almost certainly have advanced to a level where breast cancer is no longer seen as the killer that it is today. Is it right to make decisions today based on an unknown future? I'm not sure that it is.

As for screening out disability, I think some see that as the easy way out. Instead of learning about the disabilities, developing strategies to help those with certain disabilities to live full lives, and providing the necessary support in order to do that, some would rather not have the disability there in the first place.

I think that if we never had to be tolerant and accepting of those that are different to us, the world would become a very cold, selfish place.

It is the different people that make up the human race. Without certain people, the human race would have to change. And I don't think it would be for the better.

oh gorionine I know -don't worry. I just worry myself that the video presents a sort of version of reality that downplays the difficulties. That's not the intention, it's more about'look at me, I exist and deserve to be treated with respect'

xenia- I am utterly convinced that ds3 has the same genetic predisposition for autism as ds1 (not so sure about ds2-think he's escaped). It's why we treated ds3 very carefully during the vulnerable developmental years. He tests as autistic on every type of biomed test we do, but has developed totally normally.

So genetic screening (using a search and destroy method) would have got rid of severely autistic ds1 and typically developing ds3. I can't see much happiness in that tbh. Although life would certainly be very easy with just ds2 or a bunch of ds2 clones (he's a very laid back, easy going child).

Wouldn't be as interesting though.

For something like autism which is inherited either via many genes, or mutliple single genes (with an environmental trigger in some cases) then snipping out the relevant genes is never going to be a possibility. I could only work as a search and destroy and I wouldn't want any part of that.

It could only work as a search and destroy.....

This is not really a black and white argument. I can see why the couple in question would want to try and eradicate breast cancer from their family, even though in some ways it did not sit comfortably with me. But when a disease or illness has caused one person in your family so much pain and misery it is more than difficult, often impossible, imagine more than one person suffering. I really do not want to. But I can understand why they have chosen the path they have. This is not to say the child will not have 'something else' though and I think that is where medical professionals naivety often comes in. I read one article on this couple and the professor in question said it not only erradicates the breast cancer gene but it also ensures the child is born 'normal'. I know it said normal as it struck me at the time as a HUGE assumption to make prior to birth and quite a frightening one.

I think we can try as we might to create as little pain and misery as we can but we will never eradicate it completely and it is naive to even think so.

I think it is necessary to show people the happy positive side though. Because in general, people who don't know will only look at disability from the negative pov. It's as if the world doesn't want to acknowledge that there are positives, because doing so makes less of a justification for iliminating certain people from our society.

So there needs to be a balanced view. Of course it's right to acknowledge that living with a severely disabled child can be challenging. But it's equally right to acknowledge that with the challenges come the rewards, and that not all of life with a disabled child is a negative experience.

Fwiw I have met Jute's ds1 and I think he is possibly one of my favourite people.

I don't think anyone here is suggesting killing off people with terrible illnesses, or with disabilities. What is being discussed is screening embryos (several days old, just a few cells). These are not babies. They are not people. It is OK to choose one and discard the rest.

You and other parents of disabled children are understandably upset by this on a visceral level, because your children are adorable and worthy of life, and you feel this is an assault on their right to live.

It isn't, though. Of course each child or adult is precious and has a right to life. Embryos don't.

THere's often an assumption that people with a disability are 'suffering'. That's not an outsiders call. My son is severely disabled and very happy. He gets cross when he can't make himself understood which is why we put so much effort into communication. But he's not suffering at all. He's very happy. He gets more pleasure out of a picture of a set of stairs than I realised was possible.

cote- youre assuming some embryos have more of a right to life than others. That's not a world I want to live in.

Had that been possible I would presumably be without ds1 and ds3 (and have some alternatives instead). What would be the point? I'm happy, the boys are happy, dh is happy. Why would be want to be with alternatives rather than ds1 and ds3. We might be unhappier with alternative ds1 and alternative ds3.

"What is being discussed is screening embryos (several days old, just a few cells). These are not babies. They are not people. It is OK to choose one and discard the rest"

That is your opinion cote and you have to understand other people clearly do not feel the same way.

Jute, I was refering specifically to illness and disease when I mentioned 'suffering'. I was not refering to a child/adult with developmental disability or disorder.

but cote it is.

because if screening had been available five, ten, fifteen years ago, then there's a possibility that the posters' children might not be here. Can you not see that the statement which is essentially being made is that "children like yours should never be born in the first place."

The fact that these children are already here is irelevant when there are people that think it's necessary to prevent future such children from ever having a right to life.

Yes they may be embrios, but the only way they are removed is through human intervention, by someone deciding that these embrios may be allowed to become children and these will be destroyed in case they were to become children.

No Cote, for some people it is OK. That's such an emotive comment, thre's no way it would be reasonable to generalise with it! I couldn't live with it, ever. Youa re generalising your unemotive (is that a word? LOL) takje on termination to us all. Humanity varies too much for that.

If there was an op I could have given ds1 or ds3 in utero to prevent their ASD then yes I'd probably have gone for it. I'd have screened ds4 on that basis also- heck we have enugh interventions in place to try and prevent the asd developing if it is there! But asd.... we're looking at a population prevalence greater than 1%. With the costs of in utero treatment that will never be an option, so you're back to the termination thing. Which for me and many others is a no go.

I didn't screen ds4 for anything bar scans.... becuase ime if you get a high risk result the services hound you! If that was my experience with a high risk bloods (we wanted to know, would never terminate), I dread to think how they'd treat a Mum with a positive amnio for a disability but no intention of terminating.