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.

I can understand that people would like to eliminate some conditions such as Huntington's Chorea and Motor Neurone disease.
BUT the problem is where do you draw the line? I don't think it is at all black and white, there are many diseases that vary widely in their impact on a person.
Riven - you mentioned you have MS? That's a classic example of a condition that can affect people quite differently. An old neighbour of mine had it, sadly she passed her away in her early 40's and for at least 5 years beforehand she was quadraplegic and tube fed, requiring 24hr care . Yet my friend's dad (who passed away just before Xmas last year, was in his 60's. Up to less than a year before he died he lived a fairly busy and active life, and fathered 3 children. He had his bad days and good days but for the most part was a very content person, very much involved with his grandkids.
And do we trust those with the power to make a decision that is both moral and ethical? I don't think I do... I fear it could be reduced to the cost of care of of SN/disabled person.
How frightening is that? Like another poster said, Stephen Hawking has Motor Neurone disease, but has made some of the greatest contributions to science in the last and this century. What if someone decide to eliminate the possibility of his mother having a child with the combination of genes that lead to his MND?

I saw a genitic councellor a little while ago to talk about any future children dp and i wish to have after ds was diagnosed with cf.

He basicly said that it would be advised that we had embryo screening and any embryos that were carrying the cf gene would be destroyed.

He also went on to say that if i fell pregnant naturally then any developing baby that was thought to have cf would be advised to be terminated.

Both cases made me sick to my stomach, if i had done this before ds1 was born i wouldn't have him now.

Playing god is very wrong its un natural. IMO

But you have the choice. Other parents might take a different view and I suspect those in wheelchairs are delighted to be alive but would prefer to be alive with the use of their legs although probably prefer to be in a wheel chair without the use of legs to being clinically depressed (well I would anyway)

depression is a highly treatable condition that can confer considerable benefits - creative arts for example

not that it is wholly genetic anyway

Charlee we were asked to bank genes for testing wehn ds3 was dx'd last month (becuase of having 2 kids with same, albeit very differently presented, condition).

We said no- if they said it would be used to only look at therapeutic intervention then yes but that's not reality.

The Paed said she'd discuss again- she'll gett he same answer.

I can understand why someone would choose to not ocntine with a preganancy where the child might get a fatal disease- but even then it seems a shame to shift foucs on maybe a few years of disability at the end of life (as some conditions are, and cancers etc) than to celebrate the contributions of the entire life: life is a continuum after all; many of us will get a level of dependency at the end but if that's old age related people can focus on the 65 years tunning up to it- why not with other conditions?

And disabled people are part of normal, contributory existence: they ahve jobs, famillies- they don't come labelled burden and have a tag fitted saying not fit for purpose! But again we're back to helping them people the ways to contribute- the idea that X amount is spent on research into termination based interventions when Riven's bright dd can't even get a communicator to allow her to speak boggles my mind, frankly.

I think its amazing what modern medicine can do with regards to illness ect, but when it comes to things like (the true term of designer babies) choosing hair eye colour ect I feel uneasy about that, that for me is a step to far in playing with nature, and I dont believe improving intelligence will make the world a better place, its our growing knowledge and intelligence over the centuries that has damaged the planet, together with a growning population, I also worry that mother nature will fight back and that it wont be pretty.

I don't favor wholesale genetic manipulation/selection because of the problems associated with a lack of genetic variety which have been mentioned. There is a case for dealing with serious known defects which needs to be considered carefully.

I can't bothered to discuss with posters who can't see a difference between preventing disease/disability and wanting to kill everyone alive who has it. Maybe we could use genetic manipulation just a bit to cure 'talking out of your arse' as there seems to be an epidemic.

As for the whole 'disability is Better/Different' thing (as in deafness) I notice that those claiming that to be true still take the money and help they need because they are unable to do things.

Notice OP hasn't been back...

Clarissimo - apologies for the delay in responding. I am sure this has moved on but to confirm I work with people who have HD and all of those that I have met a support are all keen for a cure to be found - or to have the choice to ensure that their children are not at risk from this illness. I too have a long history of depression and being over weight and if this could of been screened for and meant that the baby that would of been Eve did not suffer the years of mental health anquish that I have then I would only be too pleased.

This is obviously I very difficult topic and I will step away from it now.

Eve

edam - you can define normal functioning without attaching more or less value to the person. Apologies for any offence caused.

Eve

Screening isnt about curing the problem in a particular foetus, it is to avoid the baby that has the condition being born at all.

You said that you would only be too pleased to have been spared the years of anguish, but would that be at the expense of never being born at all?

I understand that. I can truely see both sides of this, and of course where would the line be drawn. I can only had what I think - as always it is about our own opinion. I think that when it comes to HD in my experience many would choose toensure that their children would not have to have this cloud over them.

as I said in my post - the baby that would be Eve.....

Sorry if I misunderstood you Eve.

There's a moral difference between killing a baby born with say Down's at birth, not intervening if it's sick at birth, aborting it perfectl legally at 39.5 weeks, aborting it at 4 weeks gestation and geneticaly ensuring it was never conceived, or if it were possbile, taking a pill to ensure a child like that is not conceived. Now some people will think every one of those categories is morally wrong and others will draw a line somewhere down the middle and very very few would deliberately want to ensure a child with the relevant disability were born rather than one without the disability as with a few deaf couples who deliberately want to ebnsure their child is deaf as they say deaf is simply different and possibily superior rather than worse.

"I'm thinking that breeding out illness and disabilty is a great thing"

I cannot believe a thread with such a disturbing op can get 90 odd posts.

By KerryMumbles on Sun 18-Jan-09 13:03:17
cause then everyone will be the same.

there will be no joy or danger

no heartache or sorrow.

very well said

wow, I am so sorry to have upset people so violently - that is not what I meant AT ALL!!!!

I have actually met people with disabilties - I worked for years as a teacher with children with autism and other learning difficulties and I loved those children.

Perhaps the title of the email was offensive but that was actually meant slightly tongue in cheek.

I also at no point implied that those people in our society who have disabilites had not contributed to society (although re the Albert Einstein - his lasting legacy is the atomic bomb so don't think he is a particulary good example).

My point was that if we can eradicate diseases that are genetic then why not, I would certainly want to avoid passsing on any chance of inherited cancer and such like to my children. Also I am not suggesting that any of your children are not already smart and fit! We all do the best we can to provide our chidlren with the best future, in my mind this is the extreme end of that.

Re the deaf and blind part of my message, can any of you honestly say you would choose that for your child? No matter how clever, erudite, amusing or happy a deaf or blind person I meet may be, I am going to put that down to who they are, not whether they are deaf or blind.

I am not naive, not in the least, and nor am I narrow minded. I am sorry that MaryBS has taken this so personally.

Again I am sorry that I have offended so many people, but perhaps you could take a look again at my message and rethink my meaning.

Also none of you know anything about me and what my life experiences are so please don't assume things about me from this email which was meant to start a conversation not a war.

We live in an extremely politically correct world. Some people are extremely quick to react in a morally outraged way to things such as the suggestion that disability is a bad thing. Stop a minute and think about what I am saying - the people who are disabled are separate from their disabilty in my mind. I imagine that a large percentage of people with a disabilty wish they didn't have it.

And as for illness, the heartache and sorrow that come with terminal and serious ilnesses are in no way life enhancing as saint2shoes and KerryMumbles seem to imply.

A large percentage of people with a disability may wish they didn't have it. But do you really think that a large percentage of them wish they'd never been born in the first place? Because your OP suggests its "pretty straight forward" that they shouldn't be, if there's any way of preventing it.

Also, I may not be able to say that I would choose for my child to be deaf. But there are plenty of deaf people (the ones you think should never have got beyond the embryo stage) who do say that they would choose it for themselves.

Also also, we're never going to get to a position where all children are conceived via IVF, rather than the old-fashioned and more entertaining way. So your OP basically seems to advocate that (if you're moving this on from heritable cancers to things that are more widespread in the general gene pool so might affect any baby) everyone should have all genetic tests going (presumably via CVS/amnio/other invasive tests) and abort for anything that meant the child would be less fit, strong, clever or healthy than the norm (because, after all, what's wrong with wanting fitter, stronger, cleverer and healthier children?). I don't think it's politically correct to be concerned by that.

Also also also, if you get to a position where most children with [condition X] are never born, there's no pressure to work on a cure / treatments / equipment for people with [condition X]. I think that would be wrong both in human terms and in terms of scientific progress -- we seem to learn much more and refine scientific knowledge and techniques by understanding the mechanism of conditions and working out how to counteract them than by just terminating any embryos who have the condition.

Also also also also, in a society that has "progressed" to the point where no one is born with a disability (because having any disability is such an undesirable thing), what happens to this valuing-perfection society's attitudes to people who become disabled at birth or later in life? If the message you are consistently getting is that a life with a disability is a life with less value than anyone else's, what's that going to do to you?

still not getting it. i never say anything about not wanting a deaf person to have gone beyond the stage of embryo, that's gross and a total over reaction. this is a sensitive subject i agree but one that is worth disucssing. the people who are here and now with a disability that could have been prevented may wish that they had had that prevented, and i know that I wouldn't wish that on my children. I also know from experience how wonderful ALL children are, regardless. From my teaching experience and a couple of very good friends who are parents to disabled children. neither they nor I would ever want those chilren not to have been born (a viewpoint so many of you have assumed I hold) but their lives would have been easier if they had not been disabled. we are talking about the future, not the present. i guess if people are going to react so strongly to this question without stopping to think about where I might be coming from there is as others have said little point in continuing the thread.

I am a mother, first and foremost, and then a teacher. children are my life and the possibility of ensuring that future generations could be free of terminal and crippling diseases as well as disabilties that affect how they progress in the world is important to me. arguing with people who have no idea what I am talking about is not.

If you leap to the conclusion that I am suggesting that all people with disabilities should never have been born simply because I suggest having a disability is not an advantage in life implies a lack of faith in human nature in general. And everyone has been so quick to react to this aspect of my message rather than the issue about getting rid of genetic diseases, that I wonder if it is not just a common bone of contention that people enjoying having the opportunity to get into a row over.

From my past experience I know that a lot of people are more than happy to air their views about what is right for children with disabilies having never had any experience of them. And a lot of people seem to like getting agressive about it too.

Forget about political correctness, forget about your preconceived idea about what I have already written and think to yourself...if you could ensure that your child would be free of disease and disability would you take the steps to ensure that? I am not talking about terminations of already existing people or pregnancies, I am talking about the future.

And you know what, it's probably going to happen to some degree anyway, and I think an open minded and pertinent discussion about where the idea of designer babies should start and stop would be more interesting, and more useful. As someone mentioned earlier, PHD students apparently use this as a means of research. I am not a PHD student, just very passionate about the future of my chidlren, their children and our world.