Should parents be allowed to select a deaf child by IVF

[Reallytired]

See

news.bbc.co.uk/1/hi/health/7287508.stm

I think the parents should have the right to refuse genetic testing of their embroyos, but I think its wrong to DILIBERATELY choose to have a deaf embryo. If an untested embryo happened to be deaf I would not have any issues.

Being profoundly deaf is not the end of the world, but it is an inconvience. I don't understand why the couple feel that its impossible for a hearing child with two deaf parents to learn BSL and share deaf culture.

I woudn't pick either. Like these parents it's a choice I wouldn't want. I woudn't want the embryos screened for disabilities. (or put both back- I know that's not allowed now- or at least not advised) and leave it up to chance.

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It's absolutely not a choice I would be prepared to make.

I wouldn't allow screening.

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well, that makes me quite cross yurt (not you but anyone who doesn't like that word as used by me).

She was my grandmother and I knew her. She was limited in her social life, her working life, all sorts of areas. Why would anyone choose not to believe me, or to think it would be better if I said they were not limitations but just different abilities? They weren't. It was a sadness in her life. Just like her arthritis.

If she was here, she'd tell you the same. I really don't like people telling me what's the right and wrong word to use about a situation that I know about and they don't.

Sorry. That's not aimed at you, btw. Just the politics of using words. Very happy that some deaf people are not limited in some ways by their deafness. But my grandmother was.

She had a very good life, incidentally, and was a wonderful person who wrote and drew and was a lovely grandmother. I think about her all the time and wish my daughter could have met her. But her deafness meant she didn't go out into the world fearlessly. Maybe some other people can but she didn't. That was her limitation.

I don't know. I can see both sides. Certainly I don't see my son's disability as a gift, or a difference, it's a disability. But I think I would need to be careful in describing him as being limited. He has a bizarre alterntaive existence, and he has huge difficulties accessing the world as it currently functions but I'm still not sure it's a limitation as such on his part. I don;t know how he would describe it. Reading the very limited books available that are written by people like him they describe their frustration with their disability but I'm not sure they would ever describe themselves as limited (and these are people who need 24 hour care).

The politics of it all is interesting. DS1 has a great strength in being able to see details in pictures that other's (inlcuding myself) miss. But because he is disabled that is described as a deficit ('weak central coherence') although if an NT child was doing the same it would they would be classed as 'gifted' in that particular area.

I'm not suggesting that your grandmother didn't have a disability, or that her life wasn't affected by it. But I'm not sure about the word limitation.

I don't anyone would pick you up for saying 'she wouldn't have wanted to pass on her disability', but I'm sure very pro-deaf would pick up on limitation because I just don;t think they would see it in that way.

I'm completely undecided on the 'limitation' thing btw. Am pondering it as I work (writing a piece about disability and competence so it's relevant).

margoandjerry but times change.

When I was born the opportunities for blind people were signifficantly different to now. In fact 10 years ago opportunities were signifficantly different to now.

When I left school in 1992 blind people were predominantly expected to train as telephonists and piano tuners, and occasionally they became physio therapists. But working in mainstream offices was incredibly hard because technology simply wasn't at the same level as it is today. I applied for 168 jobs before I got a part-time job doing telesales for a double glazing company, and even then I used to have to take the pages home each night so someone could read out the numbers and I would braille them and take them back to work the next day to call the potential customers.

When I got a job working as an audio typest I did have a speech synthesiser on my computer, but it was way behind the rest of my colleagues - while they were all using windows I was stuck with dos.

It's only really in the last 12 years or so that the technology has moved in line with mainstream technology, that access companies have come on board with companies like microsoft to ensure that I can use exactly the same computer technology that anyone else can.

It took 168 applications to get my first job, when I applied for my last job I applied for one job and got it, because I was able to walk into an interview armed with the solutions to the access problems, something I hadn't been able to do 5 years previous.

Times and attitudes and technology changes all the time, so what was considered a limitation 20 years ago is no longer an issue. and what is considered a limitation now might not be in 20 years time .

You could drive a docklands train wannabe

Ah! Thank you hotpasty re the name.

If they requested deaf embros not be rejected then fair enough, if they specifically chose to have a deaf child then they should be ashamed of themselves. I seem to remember a couple before who chose to have a deaf child at the time I though how selfish.

Im sure every parent who has a child with a disability loves them to bits and wouldnt change them for the world once they are born but to deliberately put an obsticle in your childs life is such an abuse of power it really shouldnt be allowed.

pmsl yurt. actually, a self-driving car was unvaled at some science exhibition last year (will try to find link) but at the time it was said that individual governments would be the ones to decide whether they would allow to be driverless. imagine the parents who could send the car to pick up the kids from school .

I am not deaf, but I do have a congenital disability, which causes me mobility problems.
I have a very full life, went into mainstream school from age 10, university, a career, marriage, my son.
But when dh and I decided to try for a baby, it was on the strict understanding that if anything abnormal showed up on a scan, I would have an abortion. If we had gone down the IVF route, I would have been delighted that they could screen out any possibility of my disability.

I am not against disabled people. But life with any sort of disability or difference is harder. And it always wioll be, no matter how you legislate, how you make schools/employers/shops/nightclubs etc etc make things accessible with ramps for me, and hearing loop systems or staff trained in signing for the deaf, it is harder.
As a child I went thru lots of surgery to assist with my disability, and I went thru a LOT of bullying in school (until I went private). I had to fight hard to be accepted in university, and still encounter discrimination in work, no matter how much it gets covered up. There are still mums in the playground who don't know how to accept me.
I don't want any child of mine to have those disadvantages, to have to go thru what I did. I want better for my child, as I believe parents should always want a better life for their children.
And no matter how much you may protest that deafness is not a disability, it IS a disadvantage.

I think it is at best unfair, at worst immoral, for this couple not to want to take steps to have a child who does not have this problem.

Even if they don't see their deafness as a problem? They would presumably see it as immoral to reject a little being based on deafness. Because you're not just getting rid of deafness, you're not just creating the same child without deafness (they may well have no problem with that), you're rejecting an entire being because of deafness.

I would certainly have a problem with that.

Perhaps it depends on whether you see the little bundle of cells in the petri dish as a potential person, or just a collection of cell.

but yurt, following your logic ....

If you have a collection of eggs/embryos and you are going to choose one to implant, then you are rejecting some beings anyway. If you are going to do that anyway, then whether you screen them makes no difference on that moral ground.

In which case screen, and make sure the child you bear is clear of that disability.

no- because then I am rejecting on the basis of disability. Which I wouldn't want to do. I wouldn't trerminate for a disability in 99% of cases (unless a condition was incompatible with life). So why would I pre-screen? Would rather go for the random approach and get what's given.

I've no problem with the disabled embryo being randomly not chosen. But I wouldn't want to be the one playing god.

This is all very theoretical anyway as I have a complete family of 3 kids. One disabled. 2 not (although of course that can change, you don't quite see disability round every corner once you've experienced it but perhaps you see it a something that happens to lots of people so why not you?).

it's very emotive though isn't it?

I think there's nothing wrong with having children knowing that they might be disabled, that there is a chance, and choosing not to have screening because you will love the child regardless.

But not sure it's right to deliberately choose to have a disabled child. think it's better go with no screening.

Yes I would agree with that wannabe. (unless the option was my disabled ds1 or random other children who haven't yet been born- then it would be ds1 everytime for me).

Anyway what if you reject a child for deafness (because you can test for it) then they have a disability like ds1 (which can't be tested for, but has far more of an affect on his life than deafness would).

'they' being the one you choose insterad of the deaf one.

Well I say again, as one who has gone thru life with a disability, that if you do have the opportunity to avoid bearing a child with a disability, then you should embrace that opportunity with both hands, and avoid the disability.

And that would mean I wouldn't have been born. But it still makes sense to me.

And one more thing yurt & wannaBe.

Yes of course you would/do love your disabled child regardless. But your love can't protect them from the world forever, can't solve the problems they will encounter. It isn't enough to overcome the disability.

wannabe doesn;t have a disabled child. She is disabled herself.

DS1 will never remotely overcome hisdsability. He will require 24 hour care for the rest of his life. He is profoundly disabled. He does however have a happy life and is as ghuaranteed of that in the future as his non-disabled siblings.

I still would choose him over non-disabled never yet existed children.

I am disabled. I certainly don't consider my life more difficult because of it. No I can't drive a car and I have a guide dog,but other than that I lead a perfectly normal life. that is perfectly normal. and yes i have been discriminated against, but you just have to rise above it and move on. The people who know me see past my disability and know me for the person I am.

I have a ds, I go into school once a week to help out, I am on the PTA and in the process of becoming a governor (hopefully) and no-one has ever seen fit to tell me I can't.