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.

xenia it's not true that society always values disability less. I don't have time to dig out the references now, but there are societies (current & historically) that have ascribed special status to individuals with severe autism for example.

I don't value lives in economic terms personally.

'It won't be so easy to do things with it that you might have wanted to do'. TBH I've found that all my children do their own things, it's not much use deciding what they will be interested in. The one thing that I wanted to do with my children before they were born was moor walking. DS2 (NT) refuses point blank. DS3 is too young at the moment, ds1 will happily tramp across miles of moorland. So not sure that one really makes much sense.

why would it be 'nicer for children too'. Which children?

OverSimplistica you are right - studies have shown where there is knowledge and experience of down syndrome those with an antenatal diagnosis are almost 70% more likely to continue with the pregnancy.

Because being black or female etc doesnt' stop you seeing or moving or doing all the things able bodied people do and because plenty of people who are disabled wish they weren't and because a good few suffer too in ways I doubt anyone would want their children to suffer.

Which children? Many with lots of disabilities. Surely a child who will die by age 25 wishes that were not so or who can't see or hear or whatever it might be and if on the planet we can help ensure through diet or whatever that children don't have those problems then so much the better just like we ban incest because it leads to problems with many of the children born and have women take folic acid in pregnancy to reduce the chances of birth defects, encourage them not to do XYZ when pregnant, don't now give them thalidamide etc. Of course want to minimise the number of children born with disabilities. I have obviousyl read the arguments of deaf couples who want to ensure their children are deaf because they believe deaf is different anda rguably better but I don't agree with them. Even so I would leave them free to engineer that and teh freedom is the important thing.

This whole thread makes me pretty sad. I don't understand how anyone can justify killing babies (or 'fetuses' - to me they are the same) for any reason... when does a 'fetus' become a baby? Is it at the abortion limit of 24 weeks? Babies born at 24 weeks can survive and live normal lives. I know a previous post has said that this is not a discussion on whether abortion is right or wrong - but if all abortion is wrong (which it IS!) then all this screening stuff is just irrelevant.

"i think the UK qwould be better off if few children with disabilities were born and also it would be nicer for children too. If you live in a culture where everyone walks and talks and mixes in a certain way no one likes to be different particularyl."

have to pick you up on that Xenia....
so you think the uk would bebetter??

"http://www.mumsnet.com/Talk/in_the_news/687634-This-make-sme-dizzy-and-sick-why-so-sh ort-a please read this"
you talk about the uk being a nicer place without disabled children. read the link, this crime (and most crimes) are done by NT people.
my dd won't be a criminal, can people with nt children be so sure??

Riven, couldn't agree more.

Would someone who only has 25 years of life wish that none of those years had existed? Surely each and every person's answer would be different, depending on how those years are filled.

I have a fairly restricting ASD and I also have arthritis and scoliosis and endometriosis. Yes, there's a list as long as your arm of things I cannot do or need help with, or need to rest from... but the sun rises and the rain falls on me as it does everyone else. The birds sing, there are friends and family, there is hope.

Goodness me, there is SO much to life that isn't measurable by the word 'disability'. I rejoice for being alive. I have no wish to be dead. I don't know of anyone else with a disability (some VERY major) who does, either. Some would quite like the pain to stop, but that's absolutely not the same as wanting never to have lived.

One problem is you can't define a whole person by their disability.

Of course I wish that dd was whole and able to walk the moors. But then her brother who is able-bodied can't discuss structure in Shakespeare plays- because he is of average intelligence (as far as I can see) and she is unusually gifted. So why would I have wanted to keep one quality more than the other? Who decides which qualities are worthwhile for society? Or for the bearer of them?

She suffers from pain, he suffers from lack of confidence. How do I know which of these is going to make their lives harder?

I still think most parents with a child with a disability would think for their own sake and that of a child particularly if there's pain or suffering or a shortened life and worry and operations that they would love exactly the same child but without those problems and that medical science shoudl work to ensuring that we remove those disablities and indeed we have done wonders with so very many of them adn that's great.

I think the logical argument can only be that most people would prefer not to have a child with disabilities. If instead we changed our views and ensured that say 80% of children born had down's is that realyl going to be a good thing? Of course they woudl be loved, very affectionate etc etc but the UK couldn't; cope with that could it? So I don't see how anyone can argue that working towards a situation where there aer fewer disabilities is anything other than good (aside from the issue of abortion which for the record is lawful up to 40 weeks for diabilities under current English law).

No one is saying kill disabled people at birth or at 3 or 20, or even necessarily in the womb, but that it would be easier for most people if they didn't have a disability. there was an interesting lady on radio 4 this morning who has no hands and legs I think - her father lobbied on thalidomide and she made the point that we all have some disability or other but even hearing cheery her I would imagine she would rather have use of her limbs than not although obviously we all make the best of our various problems.

Who decides which qualities are desirable? There are laws on rights to terminate a pregancy for disability so the legislators decide. Secondly we give women vitamins in pregancy etc to reduce risk of neural tube defects because we obviously think it's better if we do not haev a load of babies born with spina bifida or whatever it is. Surely that is right?

Xenia, only 1 person in 800 has Down's syndrome. Many people with Down's syndrome are able to work, to contribute to society. Seeing these people as nothing but a burden in which the 'UK couldn't cope" is in my view a very extraordinary thing to say. Each of these individuals is a person, not something more akin to the problems of where we dispose of our rubbish.

I know a very lovely lady who is a Thalidomide victim who has no arms. She has a lovely daughter who's done very well at school and is an active charity worker and school Governor. Yes, perhaps she'd have preferred arms if given that choice, but I'd have preferred to be 5ft 10 and a size 8 with natural blonde hair, and I'm not. Because it's all she's known, it's made zip difference to her quality of life, to be honest with you. The only problem she has to contend with is the staring, the pitying, the assumption that she's a broken person or a burden.

We so need to change the way we look at, and value, those around us.

Xenia on Wed 21-Jan-09 10:50:55
"I still think most parents with a child with a disability would think for their own sake and that of a child particularly if there's pain or suffering or a shortened life and worry and operations that they would love exactly the same child but without those problems and that medical science shoudl work to ensuring that we remove those disablities and indeed we have done wonders with so very many of them adn that's great."

Yes if we're talking about one of the relatively few types of disability that involve pain and suffering, I would agree with you.

But if we want the same child without the disability, that only leaves the option of medical intervention, not termination. If I had been told I was carrying a child with a genetic defect and terminated, then obviously I wouldn't have had the same child.

I don't think anyone is arguing against a cure of such disabilities/chronic illnesses as cause pain and suffering. We would all like to see a cure for cancer. I'd love a cure for the hypermobility syndrome- but only for the pain part, mind, not for the bit that turns out dancers and brilliant footballers.

What we would not all like is a cure that removed any foetus that might be carrying an added risk of the condition.

When it comes to disabilities that do not cause pain or suffering, I think you are in a totally different situation again.

I might think that anyone who does not have my gift for languages is deprived and must be suffering; parents of sporty or mathematical children might not agree at all on my definition of essential/desirable traits. To me, my Dad's complete lack of musicality seems a disability- yet he appears to be quite happy. WannaBe seems to cope well without sight.

"if we want the same child without the disability"

You are thinking about this from the point of view of a parent who has already had that child.

Think about it as a woman who will soon be pregnant. What you want is a baby (not "that" baby), and you would rather have a baby without severe disability, would you not?

All things being equal people want a child without diabilities and I'm glad they do. I don't want them educatd to think it's just as good to have a deaf child or child without legs who are just different. I think it's not good if things changed so 80% of children have down's or 90% of children were born blind.

There is probably no pain and suffering involved with being blind really but I would iek to see blindness eradicated ideally by genetic engineering, pills, surgery in the womb rather than abortion.

CoteDAzur, no.

And the trouble is, almost no test determines how severe the disability will be. All it tells parents is that their child will have (X). That child's life could be very good, or fairly moderate, or with the wrong support/therapy/pain relief bloomin' hard work for everyone.

But I made the decision to go ahead with a pregnancy even though I'm ASD and so's my husband. You know what, we have a fantastic son.

So, personally speaking, no.

But I do understand that if the test shows severe disability, it has to be a personal decision based on the family's circumstances.

What worries me is the testing for minor things. Club foot, an extra finger, etc. We're seeing children aborted for this, and it's all treatable.

We're on the wrong side of the divide for morality, I think, and it's getting worse.

amber - There was an article in Wired magazine some years ago about AS called The Geek Syndrome. I think you might be interested to read it.

Yes you have a higher than average chance of having autistic children and went ahead with pregnancy but what were you going to do, never have children?

Aren't you relieved that your DS isn't severely autistic, though?

What amber said. In my case, it is possible that it is the same gene that can give disability- or extreme proficiency at the performing arts. No amopunt of genetical screening can tell you how it's going to work out for the individual child.

As I mentioned, both my children have the same gene/condition. One of them is disabled, the other one is not- I am about to enter him for dancing classes as it's beginning to look like he might have talent. In which case, it's no doubt due to the same gene.

Yes, we don't know how severe a condition will be, but you could opt not to take that chance and have a baby who doesn't have Down's Syndrome at all, for example.

Cote DAzur, you ask if I'm not relieved that my DS isn't severely autistic? Not really. With both of us with an ASD, we would have understood his needs very well indeed. And we would have made sense to each other.

What would have been REALLY scary is having a very sociable girl who wanted to hold loads of parties and go to many events in echoey halls with many mums wishing to discuss the intricacies of clothing and makeup with me . And no, I'm not joking.

Different needs. Would we have coped? Yes. But it would have been infinitely harder work for our own situation.

I've helped with children with severe needs for many years in one form or another. Oddly, they generally don't misbehave with me, because I can spot what's causing it almost immediately. And if they do, I can realise that it's a disability thing and not take it personally.

I value them as much as any other person on this earth.

understand his needs.. that's what the deaf who want a deaf child say too. So wouldyou have procured a child with severe autism then? Do aspergers fathers want aspergers children because they can be the same as each other? I know that many parents want their own genetic children not an adopted child beacuse they want to pass down their genetic heritage so I can see how this argument might work.

Xenia, as a person of Christian faith, I believe that the child I get is God's choice. It's a personal belief, and not one I'd expect all people to agree with.

I'm not sure how I'd procure a child. Isn't that where you buy one? .

I think that Asperger syndrome parents cope better with a child whose basic way of life is understandable to us, but we have to live in the 'NT' world, so have to be able to adapt to other needs somehow, perhaps with extra support from others. I've certainly welcomed and used support groups of varying sorts during son's life, and it's worked extremely well for all of us. Likewise, I've cared for non-disabled children and the parents have been absolutely delighted with how it's worked out, because they know that I'm equally logical, fair, rational and sensible with all children, always checking for safety and setting up sensibly planned activities for them. And because I know to use really clear language for my own needs, it seems to work for them too. Likewise, children often realise what I'll find difficult, and it means we can have a good laugh about things together.

It isn't until teenage years or adulthood that they seem to develop a sense of 'pity' or any notion that I might be 'broken' and it might have been kinder if I hadn't lived in the first place. I personally really don't feel that way about life.

We really do just need a much, much less selfish society. If we can spend trillions on weaponry but deny a child the right support to make their life a better quality, it just seems so unfair to deny those children the right to life. I appreciate that others have a different view.