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.

There are many, many deaf people who would not want to become hearing if given the choice. It would be as strange to them as a hearing person wanting to become deaf. They are a minority culture and saying they should not exist, however that would be achieved, is the same as saying any other minority culture should not exist.

RaspberryBlower, that is true. I don't know how popular it is, but there are those who wish to actively prevent other deaf people from being treated for that reason. Even those who desperately wish to be treated.

"If some of you find childhood disability so inconvenient that it should be genetically phased out, than God help you should your mother get Alzheimers, or your father suffer a stroke, of your child suffer brain damage in a road traffic accident..."

Yes, all unavoidable. We all hope these won't happen to people we love. If they do, we deal with it, continue to love and support them, and help as best we can.

However, if there is a way to avoid these disabilities, be it by screening or protecting my toddler from accidents, I will of course do it. Because, a disability is of course an undesirable thing. (Please don't say you disagree)

"... or you husband become clinically depressed"

A treatable and hopefully temporary condition. Hardly the same thing as a lifelong disability.

"... or your daughter self-harms"

Ditto.

"... or your eldest sons takes drugs"

What, you are against fun, now?

No, seriously. What do these have to do with hoping your baby will not be born with a lifelong disability?

Mary - I would be very interested to hear your answers to the questions I asked amber. I am genuinely curious.

Cote, there is a huge moral difference between hoping against disability, and genetically phasing it out.

The problem with the argument is that the human desire to reproduce outweighs all logical or illogical argument against it.

A deaf woman and a blind man will still want a child, regardless of risk. One assumes that they would still want a child because their life experience has not been so unhappy as more able-bodied people would necessarily imagine it to be.

Without that inherent drive, the human race would wither on the vine. We must take the rough with the smooth in life.

We can wish otherwise, but we cannot tinker. If you interrupt the natural flow of a river, it will flood an entire town.

Do we not tinker when we advise pregnant women on avoiding known causes for problems in pregnancy that might damage the child? Should those already with a disability take that as an insult?

"However, if there is a way to avoid these disabilities, be it by screening or protecting my toddler from accidents, I will of course do it. Because, a disability is of course an undesirable thing."

What about me? Should I have screened out the gene that could produce a disabled child- or a dancer? Should parents screen out the gene that may produce a child with social problems or a scientific genius- or both at the same time?

I don't think anyone here was talking about sterilizing deaf couples or some such.

I've been on this thread from the beginning and we have only ever talked about voluntary genetic screening of embryos, from couples who want to have future generations free of a genetic problem.

cory - Is there even a gene for hypermobility? Is there a genetic test?

Whether or not you should have screened for it, I can't tell you. Personally, I wouldn't.

"If you interrupt the natural flow of a river, it will flood an entire town"

Or you construct a dam on the said river and provide power for the proverbial town.

CoteDAzur on Thu 22-Jan-09 22:18:23
"cory - Is there even a gene for hypermobility? Is there a genetic test?"

It is a genetic condition, so presumably there is a gene . But no genetic test as yet. It has run in the family for generations (there is a test for hypermobility itself in a living person).

Dd's brother has the same hypermobility, but usually very little pain, and is getting the benefits from the hypermobility as it makes him supple. Even dd is a very graceful dancer when not in too much pain.

It was rosieglo who suggested I should have wanted to screen. But I wouldn't have if the option had been there. And for the same reason I fully understand that Amber wouldn't either.

I do konw about dementia as my father had it and died last year. Just because I would like us by genetics or other means to eradicate certain conditions, deafness and diseases doesn't mean I am not sympathetic to those with dementia. I regard genetic engineering as a fairly natural thing not too different from evolution and think on the whole it is great.

yes give parents a choice to screen out genes, if we discover them, for various things. My sister is allowed in law to sit down there with a very very long list of characteristics of her sperm donor from the US. I chose a very musical man as my chidlren's father to match my own genetics in that area and all the children are musical. My children look fairly good because both their parents do. We mess around with genes all the time anyway so we might as well be honest about it. Anyway for the moment I doubt most parents can afford to and science is not really there yet.

We would obvoiusyl need to screen for any genes which bring advantages. Just like some schools will pick the Reception class in competitive entry at 4+ (good schools anyway) sometimes to get a balance of loud and quiet children so we would need to ensure we kept some balance in terms of what the planet needs and we ought really to stop all those abortions of baby girls in India and China which are having a huge imbalance, shortage of wives even in some areas.

Cote, I WILL reply to your questions on faith, but probably better on another thread? Probably over the weekend, when I've got a bit more time...

Cote, you ask if I?ve read "The Curious Incident of the Dog in the Night-Time"?

Yes, I have. Good book.

You ask about being a "visual aspie"? If the budget will cope, get Dr Temple Grandin?s book ?Thinking in Pictures?. Not a lot of money from good online booksellers. She?s autistic, a brilliant engineer, and thinks in pictures, as I do.

How does it work? Easy? Get a piece of paper and a pencil. Now draw all the things you can see in this phrase:

?It was a complete red herring. I don?t see why I have to carry the can for this. I?m not able to pull a rabbit out of a hat for the managers, am I? I have to be able to draw on my skills and I know life isn?t a bowl of cherries?.

Do you have a picture of a red fish, someone carrying a can, someone pulling a rabbit out of a hat, a manager, someone taking a pen and drawing something on their skills, and a big bowl of cherries? My brain does. I then have to erase every single bloomin image and work out what on EARTH they were trying to say.

Now try drawing these things: the Holy Spirit, love, grace, the phrase ?to be?. How about ?faith?. What does it look like on the piece of paper?

Any luck? No? In each case I have to be able to imagine what something would look like, or what a person would be doing to demonstrate it, and create a visual image of it before it means something to me.

?Have faith? means my brain is trying to create a picture of someone with a handful of, er, umm, nope, I have no idea what.

A faith is what people do when they read the Bible (for example) and when they go to church (for example) and when they believe that God exists and that there is a heaven and a hell. Those are all things I can picture, even if I?m not sure what God looks like, (I can guess, just to give my brain an image to work with).

But I don?t know how to ?have? faith in that sense of ?if you?re feeling sad, just have faith?. It would have to be phrased as ?if you are feeling sad, read the Bible and find out what practical things you can do to help yourself, and maybe pray to God and tell Him what you are worried about? It is a set of actions, not an invisible thought, an emotion.

Do I believe in myths and heresay and do I do everything a church tells me? No, I refer to the source, the four Gospels. If it?s not in there, I apply a test of careful thinking and asking for expert advice. Some religious practices really help me, others don?t.

This isn?t a thread about faith, and I?d rather not have my faith questioned on this bit because I'm too tired and worn down to really cope with it at the moment, so please can I ask that if people have other questions to ask about it, they try to understand that I?m on the autistic spectrum and I?m finding this very, very difficult indeed and would rather stop?

Is there any doubt that disability is indeed undesirable? Yes. Much doubt by many of those with a disability.

Let me rephrase it:

Is there any doubt that difference is undesirable? For disability is, most of the time, about difference.

Improving quality of life is absolutely fine.

Thinking that 'disability = automatic bad quality of life' is not fine.

Thinking that "disability = automatic bad quality of life therefore there should not be people with a disability and we're doing them a favour" is not fine, because it is based on a wrong fact. There is no automatic bad quality of life to the vast majority of disabilities.

People are often scared of disability, because it's something different. People often don't like 'different'.

So... it's maybe easier to say "oh you must be suffering, poor thing" and to plan how to make it easier for themselves by not having people with a disability to look at, to talk to? Easier to do that than to listen, and realise that each experience in life can teach people something, can give them a chance to learn new skills, see the world a different way, learn compassion, learn empathy, learn of beauty and of the simple things in life being worth every bit as much as the High Fashion and High Status things.

For those that need it: Help. Appropriate therapies or medicine to stop illness. Pain relief. Dignity. Respect. Financial support. The right to earn a living in a way that supports their needs. A freedom from bullying. Love.

That would be a blessing indeed.

There's obviousyl the religious view that things are sent to try us and life should be a veil of tears and our probllems and difficulties make us stronger etc and anyone my age will have had their fair share of difficulties and understood how that helps people develop, makes us better in a way but I still don't agree it is therefore desirablt that if we have the means to avoid those problems, disabilities, illnesses and the like we should not take steps to avoid them. That is progress and progress is good. I'm glad we don't still live in caves with most of us dying young and no medicines.

None of that means that I don't like people with disabilities or think they're not fit to be around etc but I do think if we can eradicate these things then so much the better.

Xenia, not really.

Disability really isn't mostly about suffering and tears.

It's mostly about difference, mostly about having to find novel ways round problems,e.g. about those in a wheelchair finding they can't get in the building or into the loo, those with a hearing aid finding no-one's bought a hearing loop so they can hear. It's about those with a visual problem finding that no-one can be bothered to mark the steps, so they fall down them. It's about those with ME/CFS finding that no-one's thought to build a break into the day so they can have a lie down and then carry on working. It's about those with arthritis finding that the door handle is too difficult to turn, and about those with profound dyslexia finding that people won't let them use a computer to do exams.

Sometimes, sometimes, it's about pain. Sometimes. But frankly people can be in huge amounts of pain if they suffer from migraines or a bad back or period problems. We're not trying to improve society by genetically engineering out all those with migraines or period problems. We've chosen the people with disabilities.

Xenia, I think that you are missing Amber's point, that many disabilities are not just a trial but also carry their own benefits. Very few disabled people experience permanent constant bad pain. I don't think it is helpful to see Amber's Aspergers just as a problem.

"like some schools will pick the Reception class in competitive entry at 4+ (good schools anyway) sometimes to get a balance of loud and quiet children so we would need to ensure we kept some balance in terms of what the planet needs"

So how exactly would you legislate for this? Some parents are allowed to terminate foetuses with the Aspergers gene, but only a certain quota? X no of foetuses with the hypermobility gene should be retained?

I think once the technology is there, there is an overriding assumption that the particular gene involved is bad and that a responsible parent should be doing something about it.

threads like this piss me off tbh. people ignore the common disabilities caused at birth, easily preventable and only concern themselves with ones that they can test for.

you can have all the tests you want, scientists can work as hard as they like, you can be told that the risk of you having a disabled child are nil............
then you go into labour and.......
yikes the hospital cock up and wham bam you have a disabled child.
when will people realise this is preventable??
or is it easier to ignore it and carry on aborting and testing.

Xenia, you seem to see a wider purpose to genetic engineering. Would you say it was the self-direction of human evolution?

they piss me off too, 2shoes.

Mainly because everyone normally ignores it when they are told that these obviously disadvantaged, undesirable disabled people are actually happy

And ignore the disabled people who say that themselves.

dd1 is perfectly happy - a much sunnier, happier child than dd2 (who, bless her, is a bit of a whinger ). the poeple who aren't happy are other people, who "can't bear" the fact that she is disabled. The people who (regularly) say to me "oh, isn't it a shame?" when i have to tell them why she isn't answering them in supermarket queues, etc

But that's their problem, innit? It (mostly) passes her by