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Original poster

Should parents be allowed to select a deaf child by IVF

77 replies

Reallytired · 10/03/2008 18:29

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.

OP posts:
goingfor3 · 10/03/2008 18:31

I agree with you. I can't see why a hearing child couldn't be part of the deaf community.

edam · 10/03/2008 18:31

I heard the father on the radio this morning. Seems he was objecting to the idea that they would be forced to reject any deaf embryos, rather than actively selecting for deafness. (Although in practice I'm not sure there's much difference.)Which I thought was interesting and possibly reasonable.

pruners · 10/03/2008 18:33

Message withdrawn

goingfor3 · 10/03/2008 18:33

The fathers point is reasonable but can they not refuse to have the embryos tested for hearing/deafness?

yurt1 · 10/03/2008 18:34

If the father is refusing to reject deaf embryos I think he is entirely reasonable.

dinny · 10/03/2008 18:35

Reallytired, numerous people in the deaf community do NOT see being profoundly deaf as an incovenience.

Greyriverside · 10/03/2008 18:44

I think if someone is deaf (applies to all disabilities) It is right that they should be treated as equal members of society and that we should do everything we can to make their lives as full as possible. And we do. There are Subtitles on TVs/DVDs. Text phones, translators etc.
Not to mention the sums spent on research to cure or alleviate the problem.

But someone who wants to make a deaf child on purpose? They could just have a hearing one and use a long needle to make him deaf. What they are suggesting is no less offensive to me than that would be.

Every time I read that being deaf is not a disability I wonder if the people saying it are still collecting the benefit anyway.

yurt1 · 10/03/2008 18:52

I've checked on the news websites. He is indeed objecting to screening out of deaf embryos. So he's not asking to actively choose a deaf child, just to not actively avoid one. Which is fine imo. He's asking to not play god. Good for him.

ornamentalhaggis · 10/03/2008 18:53

I recently lost all of my hearing and have just today been for genetic counselling. It's been a horrendous experience for me, devastating in fact. There's not one area of my life that my deafness did not touch and if it turned out that my child was congenitally deaf, I would ask for them to be referred for a Cochlear Implant right away.

I do admire the Deaf culture, but it is very impenetrable, and if you have acquired hearing loss like me, you just don't fit in there. They have they're own cultural identity which is fantastic, they see it as a positive thing, but they can't possibly miss what they never had.

Being deaf isn't easy ever, even if you identify it as a positive and integral part of you, it can't be denied that we live in a hearing world and being deaf will always be a disadvantage.

Original poster
Reallytired · 10/03/2008 21:29

I know someone who is a teacher of the Deaf and he is profoundly deaf himself. He also has fairly good speech inspite of being born deaf. He is a an extremely talented man and certainly is not on benefits.

I know several people who view deafness as a difference rather than feeling sorry for themselves.

My father in law is very severely deaf (He cannot hear a crying baby, but can hear pneumatic drill) He is like ornamentalhaggis in that he became deaf in later life. He finds it very upsetting that inspite of wearing hearing aids he cannot hear what my son says.

OP posts:
edam · 10/03/2008 21:30

So sorry, ornamental, sounds dreadful.

Yurt, I agree, seems reasonable to me. Not actively selecting for deafness, just not rejecting embryos on that basis. (Although how the hell they can tell, I don't know - surely there must be forms of deafness that don't show up in an embryo...)

sugarpear · 10/03/2008 21:44

I think its wrong to activally {sp} choose a child to be born deaf.

My ds is profoundly deaf and we adore him. But we would never have chosen him to be this way. His almost 6 and not had the easiet start in life being born 10 wks prem weighing a mere 1lb 14 oz. Lots of trauma's on the way emergency ops etc.

His now had a cochlear implant and is learning to understand what he can hear. But its a long road ahead. At his age it is a disability and yes i get benefits for him. Why because with childhood deafness often comes other issues. Some might say my ds had slight autism others say its ocd. But he does have his ways. An example is his school uniform he will only wear it if it has his school emblem on it. And 5 each of everything is very expensive. If it gets the slightest bit dirty it has to be changed. He has lots of hospital visits. And thanks to the twat london mayor we have to pay the congestion charge for every 10 minute appointment he has.

He will not get on public transport so i have to maintain a car to get him to school and hospital.

His frustration before the cochlear was unbearable sometimes. He was so angry and so sad and it was heartbreaking to see him hurting so much.

He has and will have a wondeful fulfilling life and i wouldnt change him for the world. But i would never have chosen for him to have suffered for even 1 second.

SenoraPostrophe · 10/03/2008 21:49

was it about them refusing to reject embryos?

that is not how it came accross on jeremy vine at all. I thought they were actively seeking to selct deaf embryos (i.e. rejecting non deaf ones).

then Jeremy vine settled the argument by mentioning that the child would not be able to hear james blunt.

(god that's the last time I listen to that programme)

SenoraPostrophe · 10/03/2008 21:49

was it about them refusing to reject embryos?

that is not how it came accross on jeremy vine at all. I thought they were actively seeking to selct deaf embryos (i.e. rejecting non deaf ones).

then Jeremy vine settled the argument by mentioning that the child would not be able to hear james blunt.

(god that's the last time I listen to that programme)

BoysOnToast · 10/03/2008 21:55

if yurts right, and this father is only asking that he not be made to screen out deafness, then i agree with her (yurt) and say Good on him.

i am sorry to hear such sad stories from others, but i dont think that those experiences have anything to do with this family tbh.

Tamum · 10/03/2008 21:56

I would be amazed if anyone with deafness acquired in later life ever chose to have a deaf child- I am full of admiration for the way the deaf community have built up their own culture, but I just can't see how it can be enough to compensate for never hearing music, or your child's voice. I agree that choosing not to discard deaf embryos is quite different from actively selecting deaf embryos, but active selection has certainly been mooted in the past by deaf couples and I just don't think that should ever be allowed.

edam, that's very true, they can't diagnose more than a proportion of deafness by genetic means, but I guess they just mean the specific mutation present in these parents in this case. Pruni, you're right that this is PGD, but on the other hand PGD can't exist without IVF. I agree that it is worth careful definition though.

KerryMum · 10/03/2008 21:59

This reply has been deleted

Message withdrawn at poster's request.

margoandjerry · 10/03/2008 22:13

my grandmother was deaf throughout her life (very early childhood illness) and it was a terrible burden for her. Of course she lived around it and had a good life but there's no denying that her life was made harder and sometimes sadder by her disability. Of course deaf people are equal to other people. That goes without saying. But it's not the same as saying deafness is just as good as hearing.

I find the politics around this absolutely bizarre. Some deaf people have found a way to form a community around their deafness. Absolutely great and that should continue. But why could you not join that community as the hearing child of deaf parents?

Seems like tribalism to me. I don't have a problem with refusing to have deafness screened out. I do have a problem with people seeking to have it screened in (which is what some people have done).

None of us have everything in life, but why would you want to impose a limitation on a child? They will have their own anyway, so why impose another one?

margoandjerry · 10/03/2008 22:16

Should point out she was profoundly deaf throughout her life. This was not just hearing loss or hearing impairment.

yurt1 · 10/03/2008 22:20

Did she learn sign margo? That seems to be the biggest difference.

I watched a programme where a deaf couple had a child and they wanted the child to be deaf. Especially the father who was brought up by hearing parents. The mother who had been brought up by deaf parents was more ambivalent. Anyway their baby was profoundly deaf and they were pleased.

There would be similar arguments amongst some people with Aspergers/ high functioning autism. It's the culture vs condition thing. I have some sympathy with it (although in my son's case I don't think his autism has anything to do with culture).

aviatrix · 10/03/2008 22:25

This reply has been deleted

Message withdrawn

edam · 10/03/2008 23:00

I would like to know what the mother feels, rather than merely the father's POV. She's the one who will be carrying these embryos and giving birth to them...

Tinker · 11/03/2008 00:39

Oh, I listened to this on JV as well. I did lol at James Blunt not being the best example to put forward. I found it incredibly frustrating to listen to, the mother seemed to not be addressing the points put to her. She kept saying that deafness wasn't a disability. Their argument was that were there, say, 4 embryos and 3 were hearing and 1 was deaf, they would choose the deaf one if they were only to keep one.

They seemed to be coming from a position of fear, maybe. A hearing person can learn sign language as well.

MotherFunk · 11/03/2008 00:49

Message withdrawn

smartiejake · 11/03/2008 05:58

I have the utmost respect for the deaf community and can understand to a certain degree why a deaf family would want a deaf child. A deaf child in a hearing family might easily be as isolated. The difference is that a hearing person can learn to sign but a deaf person cannot learn to hear.

When they exist within their own community with other deaf people using their rich and varied language and there wonderful culture there is no disability. There are no barriers to communication.

But to function in the real world where:

  • lip reading (which involves high levels of concentration) is necessary

-learning to listen with very little residual hearing and being reliant on technology which although is now highly advanced -still breaks down, is necessary ( and not always possible)

  • needing a translator to communicate with people in everyday life (who can not follow you round in your every day life for every minute of the day) is required.

surely must mean that life is harder in the real world for a deaf person and why would you choose that than an easier life?