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.

Presumably because they don't see the hearing world as that important. In the way, that presumably you don't think it that much of a disadvantage for your child to not grow up knowing say Mandarin.

I have some sympathy with that tbh- I wouldn't go as far as choosing a deaf child, but I can see why they would react strongly to being forced to avoid deafness.

I think the father was protesting because a law is going through the House of Commons which would mean that parents would not be allowed to select a deaf embryo - it would have to be discarded because it has a disability.

I think that this is not an area for politicians to legislate on.

The controversy arises I suppose because the other side of the story is that the deaf embryo could be activelt selected. Hence the arguments about whether deafness is a disability.

It's still not the province of the politician IMO.

p.s. sorry Pruners. I don't know if it is an embryo that is chosen or discarded. From what you say I guess not butI don't know what else to call it.

oh gosh if that's the case I fully support them susie.

I was pondering this. If I knew that both dh and I carried a recessive that would mean we could have a deaf child I really wouldn't want embryos tested for deafness. I wouldn't choose deafness, but selecting against deafness and discarding an embryo because of it would not sit comfortably with me.

Totally different if we're talking a severe life limiting condition.

She couldn't really sign Yurt. We all knew the alphabet so used to sign out the odd word that she couldn't get by lip reading (and obviously lip reading doesn't help much in some situations) but it wasn't really in the family that was a problem. She couldn't go out and integrate in community because her profound deafness combined with some mobility problems meant it was too difficult for her. One or other would have been manageable but both made it very difficult. She had early onset arthritis quite severely and I'd think anyone campaigning for the right to opt for a child with mobility problems over one with no problems would be barmy.

I think the point is that we all feel at ease and comfortable with people who are like us and who understand us. But for all of us, there is a whole world out there of people who are not like us and who don't understand us. Part of life is working that world out and getting on with it. I don't think it's on to impose on a child that they will prefer to stick within their own community.

I think it would have been different for her if she'd had sign though because she would have had language - a proper language.

In some ways I think a hearing child in a deaf family may have it tougher because they become in effect a carer and probably an interpretor etc.

I'm not advocating choosing deafness over non-deafness, but playing god and destroying an embryo because of deafness disturbs me. (as would a termination for deafness)

It might have helped but the wider world doesn't share that language. All fine if you are prepared to remain within your language community but not if you want to have a wider community or just perform simple tasks in the everyday world. Or do simple things like go to the theatre with your husband. Or have a long chat with your daughter on the phone.

Actually she had some technology to help her with the latter and I'm sure these things have got even better since she died but I still struggle with the idea that she would ever have wanted to pass her limitations on to her children.

I agree with Ornamentalhaggis. If you have an acquired hearing loss you just don't fit in with the deaf community in the same way.

I started losing my hearing in my 20's. Until recently I had NHS analogue hearing aids which gave me some hearing but not enough to follow conversations or use the telephone confidently. The only films or television programmes I could watch were ones with subtitles. It is very easy to become cut off from society as you have very little idea of what is being said around you, can't hear the radio properly without annoying the neighbours and the use of the television is limited.

A couple of weeks ago I was fitted with a digital hearing aid. It's not quite powerful enough for my level of hearing loss but it's like a whole new world. I hadn't realised just how much I'd been missing out on. I spent the first few days asking dh stupid questions like "Has dd's voice always sounded like that?" or being stupidly excited because I could hear someone speaking without being able to see their face.

Having discovered just how much you can miss out on through deafness I can't imagine wanting my child to be deaf. OTOH I also wouldn't want an embryo to be destroyed purely because of deafness. It would make me wonder what else they would want to screen out.

ooh margo - lots of deaf people are going to have real problems with you using the word 'limitations'. That's probably why they find the idea of screening for deafness so aborrhant.

Your grandmother didn't have the support she should have had. I don't buy completely into the social model of disability, but I do in part - and support - and access to a fully functioning language even if you can't speak it with everyone is a big deal.

"Why on earth would anyone choose to have a deaf child over a child with hearing? Why?". Maybe because for those parents it's the only world they've ever known so to them the prospect is not as terrifying as it would be to someone who has either lost their hearing later in life or someone who has never experienced deafness and therefore their pov is based on their own fears, iykwim?

Also, a deaf parent is the best person to bring up a deaf child, as they know what it's like to be deaf/know how to overcome obstacles faced by the hearing impaired. For two deaf parents, who have never been able to hear, bringing up a hearing child might be like having a child with a disability, like two hearing parents bringing up a deaf child.

I wouldn't personally choose for my children to be disabled but I wouldn't opt for all disabled embrios to be destroyed either.

As an aside, I went to school with a child whose parents were both deaf, and he was blind, now that was a difficult combination, although he didn't lose his sight until he was in his teens. But as the hearing child of two deaf parents he struggled immensely. He didn't speak until he was 4, as he wasn't spoken to, he could sign fluently though.

I think it's all about implications, isn't it? By actively choosing to discard embryos with a disability, there's a comment being made on those who have been born with that particular issue.

Genetic testing opens up ethical dilemmas we really don't have a coherent society answer for anymore.

coppertop, I've had a cochlear implant and I know exactly what you mean, it's like I've been given my life back. The isolation was the worst part, but also people's ignorance; them thinking that because I couldn't hear that there was something wrong with my brain. Or people would turn away from me and start talking to my partner. That loss of independence, getting people to do simple things like make telephone calls, go to the post office, answer the door is hard to accept too.

I wouldn't reject a 'deaf' embryo because it's just not something I believe in, but the advances in cochlear implantation these days mean that the child - if implanted in babyhood - will have just as much opportunity as the average child with a mild hearing loss. Mainstream schooling is a reality now for congenitally profoundly deaf children and that's a good thing.

it is unfortunately very true that the deaf community is very impenitrable. My cousin has a friend who is deaf, and when she married someone who is not, he was not welcomed into her circle of friends at all, it's almost like disability discrimination in reverse.

Actually I agree with you SueBaroo (although probably coming from different angles).

I have a child with a disability that affects his functioning far more than deafness ever would. If someone said to me 'come with me' and stood me in front of a petri dish with 4 embryos and said you can have ds1 or you can have one of the other 3- who don't have his disability then I would choose ds1 everytime.

If they could 'correct' his disability I'm not sure what I would do. I would probably say go ahead because it would make life easier for him, but I'm not 100% sure. I would never choose another 'healthy' unknown embryo over him though.

And it seems to me that the bill would force me to do just that. And that doesn't sit comfortably with me.

also isn't a bill like this a bit of a slippery slope? If parents are made to have disabled embrios destroyed where will it end? parents being made to terminate pregnancies on the basis of disabilities that are diagnosed inutero?

"Maybe because for those parents it's the only world they've ever known so to them the prospect is not as terrifying as it would be to someone who has either lost their hearing later in life or someone who has never experienced deafness"

Equally, they have no idea what they have missed out on. Sound is not be be all and end all of life but it certainly enhances the richness of living.

OTOH, I don't think they should be forced to abandon any deaf embryo (or other disability) but is that not solved by simply not doing the tests and leaving it up to chance as nature intended (although IVF is already giving nature a hand )? I understand pre-selection/genetic testing on the grounds of life threatening conditions but not for disabilities (IYSWIM)

I don't think deafness should come into choosing embryos, either for or against.

Is the man really called Tomato?

The thing is that with this method which is artificial in the first place a choice must be made anyway. What some people want is the right to choose the deaf one purposely, but failing that to leave it to chance and really really hope that the child will be deaf.

Yurt1, The manderin comparison might be right if you lived in a country that only spoke that language. Deaf people cannot function fully in the wider world without technological aids or if they have a hearing person standing next to them to do the listening and sign to them.

The fact that they need a hearing translator makes the point really.

I don't know how else to put this, but I wonder if this would be acceptable if it were someone confined to a wheelchair who wanted their children to be unable to walk too since they couldn't play ball with them anyway.

I think many deaf people can lip read actually. The last time I visited the theatre was to watch a profoundly deaf actress (acting in sign with hearing actors). She was fully functioning with no technological aid or hearing person standing next to her.

With the Mandarin example (or any other non-english language) I was considering them living in the non-english speaking country.

The argument here is about a bill that would force these parents to reject a deaf embryo. I don't think that choosing deafness will come up. I certainly wouldn't reject a child because they would be wheelchair bound. As I said earlier if taken back in time and told to choose between my profoundly disabled son or some other unborn possibility I'd choose my profoundly disabled son every time. The emrbyo is more that the disability.

Err they can function in the world without a hearing person, both my parents and sister are deaf and lip read perfectly. Only 5% of deaf people use sign language as their first language.

Regarding "Tomato", I don't know for sure but, having seen articles about him in the paper before, I have always assumed that this is his "sign name" - most deaf people in the Deaf signing comunity have a sign name they have chosen or acquired which describes an aspect of their personality, something funny that happened to them, some physical feature, etc. What it might imply in his case, I'm truly intrigued!.

The impression I have about this is that it is not so much about actively selecting a deaf embryo as being forced (under the terms of the proposed Human Fertilisation & Embryology bill) to reject deaf embryos in favour of hearing ones. I can understand why deaf parents would find this unsettling. As parents, on the whole we want our children to be like us, so I can appreciate their desire for a child who can share their language and culture. On the other hand, surely there is no reason why a hearing child of deaf parents cannot learn sign language and be integrated in the deaf community, however, a pecking order does exist; perhaps the parents feel a hearing child would be 'less' accepted? This is something that the deaf community needs to deal with.

Is a hearing child of deaf parents at any greater disadvantage than a deaf child of hearing parents? I am the hearing parent of a profoundly deaf child who has a cochlear implant. Having a deaf child was something which had never crossed my mind and was certainly a shock, but we've come to terms with it, have learned sign language, made some very difficult choices on behalf of our child and are now contemplating mainstream schooling for her. It's been a huge learning curve, bt dd is happy, bright, has lots of friends and is very communicative. Her life would undoubtedly be easier if she were hearing (as opposed to having digitalised sound provided by the implant), but I couldn't say for sure that she would be the same child if she could hear. Like yurt1, if I could go back and be presented with the choice of dd or another unknown child (potentially with a different disability - after all, we can't screen for everything), I'd choose dd without a second thought, even though I know her life will be more challenging than the average child's.

My big concern about this whole thing is that it may represent the start of the slippery slope; if in the future deafness can be identified before birth via a screening test, does this then become an acceptable reason for terminating a pregnancy? I feel strongly that these parents should be allowed to take their chances with a future child and live with the consequences. As I understand it, if they conceived a child naturally they would not be unhappy if it was hearing; they simply don't want to be forced to reject a deaf child.

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I wouldn't MotherFunk. I live with a severely disabled child and find the idea of rejecting a child based on disability repugnant.

If I could reject the deafness and choose exactly the same child with hearing then I would. But I would never choose a hearing child over a deaf one.

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