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View Full Version : This Couple want a deaf child. Should we try to stop them?


Jvstice
03-11-2008, 07:38 PM
Like any other three-year-old child, Molly has brought joy to her parents. Bright-eyed and cheerful, Molly is also deaf - and that is an issue which vexes her parents, though not for the obvious reasons. Paula Garfield, a theatre director, and her partner, Tomato Lichy, an artist and designer, are also deaf and had hoped to have a child who could not hear.

'We celebrated when we found out about Molly's deafness,' says Lichy. 'Being deaf is not about being disabled, or medically incomplete - it's about being part of a linguistic minority. We're proud, not of the medical aspect of deafness, but of the language we use and the community we live in.'

Now the couple are hoping to have a second child, one they also wish to be deaf - and that desire has brought them into a sharp confrontation with Parliament. The government's Human Fertilisation and Embryology (HFE) bill, scheduled to go through the Commons this spring, will block any attempt by couples like Garfield and Lichy to use modern medical techniques to ensure their children are deaf. The bill is a jumbo-sized piece of legislation intended to pull together all aspects of reproductive science in Britain and pave the way for UK scientists to lead the field in embryology. But in trying to do so, the civil servants drafting the bill have provoked a great deal of unrest.

'Paula is now in her early 40s,' says Lichy. 'Our first daughter was born naturally, but due to Paula's age, we may need IVF for the second.' The trouble is that, according to clause 14/4/9 of the bill, the selection of a hearing child through IVF is permitted, but embryos found to have deafness genes will be automatically discarded. 'This sends out a clear and direct message that the government thinks deaf people are better off not being born,' says Steve Emery, a sign-language expert at Heriot-Watt University.

This point is backed by Lichy. 'It is a cornerstone of modern society and law that deaf and hearing people have equal rights. If hearing people were to have the right to throw away a deaf embryo, then we as deaf people should also have the right to throw away a hearing embryo.'




Anyway, in light of recent discussions on genetic engineering, I thought this interesting and worth bringing up here.

edit: forgot to include link originally for source. here it is.
http://www.guardian.co.uk/science/2008/mar/09/genetics.medicalresearch

Inyri
03-11-2008, 07:41 PM
I don't really think handicapping your child from conception is anything but a selfish desire. They want their child to be just like them -- so do most parents -- but a father who's lost a leg doesn't chop his baby's leg off to 'be closer to him.' It's the same thing, except that nobody bleeds when you chop off someone's hearing.

*Don*
03-11-2008, 08:06 PM
^^^
I agree. The child should be born naturally. If he or she chooses to join "the community" then it is his or her choice. One can always become deaf but a deaf can not always hear.

DeadYorick
03-11-2008, 08:12 PM
I think its pretty selfish for the parents. Since they want the child to be deaf just because they want to relate better to it. But doesn't the child have a say in this matter? So I agree with Don saying that if the child wants to relate to their parents better they should just become deaf. Let them choose not the parents. Because when the child grows up and finds out that their parents chose them to be deaf without their consent they might get pretty mad

*Don*
03-11-2008, 08:27 PM
Btw, which source is that excerpt from??
just curious...

mimartin
03-11-2008, 08:45 PM
Btw, which source is that excerpt from??
just curious...
It looks like it is from the Guardian (http://www.guardian.co.uk/science/2008/mar/09/genetics.medicalresearch).

While I believe, it is wrong to purposely confine a child to silence for life. I also find something unnatural about selecting a certain embryo because it lacks the deafness gene, then discarding others because they contain that gene.

Corinthian
03-11-2008, 08:59 PM
This is absolutely revolting. Wanting to deliberately cripple their child essentially just because they are too, is one of the most selfish desires I've heard of since abortion. Maybe we can start modifying our kids to be mentally ill so that they're easier to deal with or maybe modify them so they've got Growth Hormone Deficiencies so that they never properly grow up.

I wish I could say this actually surprised me.

Arcesious
03-11-2008, 09:49 PM
How selfish of those parents! I'm very glad the British and the UK have that law. Personnally I would go insane if I was disabled in some way such as that, like being blind, or deaf, or mute! What human being in their right mind would even want to be deaf when they can already hear anyways? I highly doubt the child would want to be deaf, unless if his/her parents brainwashed him/her into thinking being deaf is better than being able to hear, which in itself is also wrong. No discrimination or offense against deaf(/disabled in other ways) people, but not being able to hear(or being disabled in any other way) is a horrible tragedy, IMO. This couple should not by any means be allowed to hinder the child's natural capabilities.

SilentScope001
03-11-2008, 11:32 PM
Er.

This is semi-revolting. Not truly, but still. I can understand why someone wants to genetically enhance their child to become super-smart geniuses. But if you really desire to 'handicap' them (note the fact that maybe deafness might be seen as not a handicap)?! Eh.

Even then, it's a clear-cut case of both the Parents and the Government committing euginecs. The government wants to get rid of deafness (by killing off embryos who are in fact deaf). The parents want to ensure their child be deaf (by killing off embyros who can in fact hear). In which case, the Parent should decide how to genetically engineer their child, NOT the Government. We're on that slippery slope, but let just make sure that we steer that sliperry slope down to parental control, not government control.

Besides, they are right that the Deaf are a lingisutic minority. And the last thing we want to do is make a minority angry. Oh no.

Corinthian
03-11-2008, 11:49 PM
The deaf are not a minority, any more so than the Eunuchs, the Blind, or the Paraplegics are a minority. They're not a minority! They're CRIPPLED. And these people want to cripple their child.

Arcesious
03-12-2008, 12:14 AM
We naturally have five senses because we are supposed to. Sight, Hearing, touch, taste, and smell.

The majority of humanity does not lack these vital senses, and the part that does lack them seems to have quite a bit of trouble, even with how they've adapted. Which would you rather? Hear nothing, or be able to hear a beautiful orchestra?

This remainds me of the point I made that we should let fetuses live and achieve sentient poential because if allowed to live, they will become sentient. This discussion perfectly relates to that. Abortion is just like making your child deaf through genetic adaptation.

See, since the british and UK have a law that you cannot genetically change an embryo in a way that hindrers a baby's natural potential, then shouldn't that same principle apply to abortion? Okay, sorry, off topic rant there... Don't comment on the thing I said about abortion please, wrong thread for it.

If you were to quiz those that are deaf or blind or mute if they would be happier if they could have the perceptual sense they lack, how many do you think would vote yes? The majority of course! Now, I'm not discriminating against the disabled. If I could cure them I would if they asked me to, but I can't, but how do you think their child would feel when he/she would finally learn the truth that his parents took away his hearing from him/her, as he/she sees people enjoying music and sound?

(IMO, I hope this kind of thinking among European leaders not allowing the couple to do this leads to people wanting rights for unborn babies)

Web Rider
03-12-2008, 01:12 AM
I read about this when they wanted their first child. Or perhaps it was a different deaf couple, but I'm pretty sure it was this one. Nobody should desire their child to be unable to walk, nor should they want them to be blind or stupid. Deaf is no exception, while I agree that a, different, perspective may be drawn from deafness about the world, life is meant to be experienced in all 5 senses(and possibly more), but no less than 5.

Regardless of their celebration of their condition, they are, by definition, disabled. Their ability to do something has been reduced or removed, hence, disabled, handicapped. They lack normal functionality that all humans are meant to possess, to desire to strip that from others, especially children, is just wrong.

I mean, how do you explain it to them? You can never enjoy a movie, a song, life in general, in the same manner as that other kid because we engineered you to be lacking the ability to hear? That's just sick.

Jae Onasi
03-12-2008, 01:38 AM
Actually, I don't want the government telling me what kind of child I can have or not have. We have a genetic eye disease in our family, but it doesn't have a huge impact on the lives of those family members who have it. Yet this proposed legislation would force my family members to destroy any embryos that had this condition because they aren't 'perfect' genetically.

This is nothing more than eugenics, and it's very disturbing.

Web Rider
03-12-2008, 01:43 AM
If Eugenics by the government are bad, why are eugenics by the people OK? Aren't certain adults in a position of power still making decisions for those who either are either unable, incapable, or lack the power or will to decide for themselves?

Jae Onasi
03-12-2008, 02:01 AM
This is an ethics issue that needs to be very carefully explored and addressed, and not legislated into effect as a knee-jerk reaction to a couple parents. There's way too much room for government abuse in this situation unless the law was crafted exceedingly carefully. And I have a rather jaded view on the ability of most lawmakers to do something with the level of foresight required in this situation, regardless of the country this is happening in. The right to procreate is a fundamental human right, and this could get taken away from people very easily if this legislation got abused.

Web Rider
03-12-2008, 02:46 AM
While I agree with your general argument, you did not answer my question. Both parties involved wish to practice eugenics. The deaf couple wants to ensure their child is deaf, while the government does not.

The upside to the government argument, is that it is preventing handicaps and disabilities now and in the future by removing genetic traits that are bad. The downside is that it's taking right away(and those bad traits could be beneficial in another way, we don't know how genes work 100%).

The upside to the parents argument is that their child will be like them. A good proud arya...I mean deaf person. The downside is that their child, regardless of their opinion, WILL be handicapped, and that WILL prevent them from succeeding in certain aspects, or enjoying certain aspects of life.

Now I would reasonably agree that the government's argument is dangerous, but the parent's argument is simply weak. In a world of sound, being deaf is not an advantage.

Ray Jones
03-12-2008, 04:42 AM
Talk about genetics being used to produce super-humans, who gonna out-rule normal humans.



Ha ha ha.

adamqd
03-12-2008, 10:18 AM
Can't people with deaf Relatives learn sign language?! Makes no sense.

Jae Onasi
03-12-2008, 10:42 AM
Now I would reasonably agree that the government's argument is dangerous, but the parent's argument is simply weak. In a world of sound, being deaf is not an advantage.

There is no good answer to this for the very reasons you stated above. I don't like what the parents are trying to do at all, but I like giving the government enormous power over a basic human right (legislating the destruction of the embryos with the hearing-impairment gene in this case) even less. It's far more likely that a government entity would abuse genetic manipulation for its own gain than an individual. I can see the gov't saying 'no genetically inferior embryos will be allowed--we don't want to pay the potential medical costs down the road. If you're genetically inferior as a potential parent, too bad, you're not going to be allowed to pro-create.' It could then be extended to something like 'you're over 40 and stats show that being over 40 increases your chance for having a Down's syndrome child. You're not allowed to have IVF to get pregnant.' If the law could be tightly written so that gov't abuse like this couldn't happen, then I'd be more inclined to consider it.

There is no win-win here. It's lose-lose, and someone will be picking the lesser of two evils.

This issue also highlights the problem of a lack of clear ethical policy with regard to genetics, mainly because the genetics field is changing so fast that the ethics discussion hasn't had time to catch up.

Totenkopf
03-12-2008, 01:09 PM
Well, since it's IVF and apparently the deaf gene is identifiable, the state should not be destroying/disallowing embryos because of a defect or two (otherwise, where do they stop and which "defects" are off limits for destruction?). I don't see the logic in trying to handicap your own child for selfish reasons (no matter how noble those reasons may seem to the parent), but as long as the parents aren't terminating a pregnancy due to the lack of a deafness gene. The egg has already been fertilized and now only requires a new "home". Perhaps the only solution to this kind of thing is to ban things like IVF and genetic manipulation of humans and tell people to be content with what they have. It's a solution that would make some happy and others not, but would avoid a legally sanctioned Dr. Frankenstein down the road.

SilentScope001
03-12-2008, 02:08 PM
NOOOO!

We can't do something like this (ban IVF). Genetic engineering is just plain needed in this day and age. We can't throw away technologies just because we think they are 'immoral'. We have to change our morality to accodmate the new technology, NOT the other way around. Besides, the genetic engineering can help make the human race better (for a certain sense of the word 'better'), and we all would desire that.

Jvstice
03-12-2008, 03:13 PM
Better? By whose standards?

*Don*
03-12-2008, 03:48 PM
Can't people with deaf Relatives learn sign language?! Makes no sense.

I totally agree.
By having a perfect child its not like the parents will become alienated.

Jae Onasi
03-12-2008, 04:01 PM
Besides, the genetic engineering can help make the human race better (for a certain sense of the word 'better'), and we all would desire that.

Oh really? We know that much about genetics that we can determine that? We've only been able to do gene sequencing in the last 20 years or so. We are still woefully ignorant in genetics and how it affects humanity and medicine.

Would you engineer out the sickle cell gene? If you said yes, you'd also be engineering out a protection against malaria for those who are sickle-cell carriers. Those who are sickle-cell carriers get malaria less often than those who don't have the gene. It's not so simple as you might think.

Ztalker
03-12-2008, 04:12 PM
It's strange...most of the time, the people who beliebe in evulution ( the natural adaption of a species to it's environnement) support 'messing with genes' as I personally want to call it. It contradicts itself.

Reading this article proves deaf people can support themselves and (like the guy from Jurassic Park said) 'nature has found a way.'

The fact that they want a deaf child for their reason is a whole different story. I can (from a professional view, since I learn about children growing up and their psychological wellfare) tell you, there are handicaps that make life difficult for children and people. If I observe what children learn by...just talking, discussing and listening, it's huge. There's a valid reason why children in the lower groups on school are send to play outside. It's not because the teacher is lazy, but because they LEARN. The teacher just creates the environnement to learn from.

Anyways, a child who is deaf might miss several parts of this fase. Not beiing capable to talk with other children (okay, there is sign language...but how many people 'speak' that language?) is hard. Discussing or talking in Sign language is always..slower...and less spontane then real speaking. They will manage, agreed. But it will be harder then when the child can speak and hear.

That's why I feel the reason for the parents wish is very selfish. You want the best for your child. If you then can CHOOSE between deaf/hearing (which they apparantly want) I'd say...please pick hearing. Choosing to raise a kid is ABOUT the child. And yourself at SECOND place.

Inyri
03-12-2008, 04:54 PM
Would you engineer out the sickle cell gene? If you said yes, you'd also be engineering out a protection against malaria for those who are sickle-cell carriers. Those who are sickle-cell carriers get malaria less often than those who don't have the gene. It's not so simple as you might think.You so get those 5 points back that I took away last night just for mentioning that. <3

It's a really good point, though. Anything you do has a domino effect; I'd rather not mess with nature, as you never know what you're screwing up by 'fixing' something else (whatever you idea of 'fixing' may be).-

PoiuyWired
03-12-2008, 06:23 PM
Talk about genetics being used to produce super-humans, who gonna out-rule normal humans.



Ha ha ha.
Funny, I have no problem with that.

Plus, I do think a basic level of eugenics is good, like preventing the creation of a disabled child in this case. As for the creation of some super human, I do not complain or support about it. The only thing I worry about is genetic diversity.

And no, having down syndrome and disabled and the like is not "genetic diversity" per se, but a birth defect humans would be better without.

Arcesious
03-12-2008, 06:23 PM
What nature doesn't seem to fully agree with is our sentience. Humanity is like a wildcard among all other species... We mess with nature in ways that don't apply to the laws of anture, because we are sentient and more intelligent than the rest of nature, and our sentience tends to make us quite differential in many aspects, making our species very random, and not totally commune with nature... We do however apply to 'survival of the fittest'...

(I think there's a better way to describe what I'm trying to say, I just can't think of the right word that applies to a species not working fully accordingly to the laws of nature...)

El Sitherino
03-12-2008, 06:47 PM
Actually, I don't want the government telling me what kind of child I can have or not have. We have a genetic eye disease in our family, but it doesn't have a huge impact on the lives of those family members who have it. Yet this proposed legislation would force my family members to destroy any embryos that had this condition because they aren't 'perfect' genetically.

QFT.

Tommycat
03-12-2008, 09:21 PM
Oh really? We know that much about genetics that we can determine that? We've only been able to do gene sequencing in the last 20 years or so. We are still woefully ignorant in genetics and how it affects humanity and medicine.

Would you engineer out the sickle cell gene? If you said yes, you'd also be engineering out a protection against malaria for those who are sickle-cell carriers. Those who are sickle-cell carriers get malaria less often than those who don't have the gene. It's not so simple as you might think.
The other side of this(which may be the case here) is, would you intentionally engineer in the gene that causes CP disease simply because the (soon to be) parents have CP. Intentionally cripling a child in this way bothers me. All parents should want MORE opportunities for their children rather then less opportunities. If the parents do this, then remove their protected status(specifically for them). Since obviously they feel that there is nothing wrong, they should not get special treatment when applying for a job. They should be required to do whatever job they can, to the same level as a person with hearing, without extra provisions for TDD/accessibility options.

Arcesious
03-12-2008, 09:25 PM
I can tell that the ethical standards of the European leaders are about to be challenged, as when other people who look at these thinhs like we do hear of all that's going on, it's going to be quite an interesting debate...

Ray Jones
03-13-2008, 03:41 AM
Funny, I have no problem with that.

Plus, I do think a basic level of eugenics is good, like preventing the creation of a disabled child in this case. As for the creation of some super human, I do not complain or support about it. The only thing I worry about is genetic diversity.

And no, having down syndrome and disabled and the like is not "genetic diversity" per se, but a birth defect humans would be better without.No, I mean "everybody" is concerned that someone might construct "super-humans" while these parents try to do the opposite.