Genetically creating deaf children

[shel90]

Fair enough, but I did mention CIs in relation to genetic modification, because I don't believe they're that far off. What I mean is that many parents (not all, okay?) implant their kids out of a wish for them to function as hearing people. The next logical step is to prevent genetic deafness from occurring at all by modifying an embryo.

This doesn't take into consideration parents who implant their kids and still teach them to sign, or adult deaf people who get CIs for practical reasons, etc. I'm talking about the desire to make a deaf child into a hearing person. In that respect I see a correlation between CIs and genetic modification.

On the flip side, I've never heard of a case where deaf parents knowingly damage their hearing children's ears in order to make them deaf. (I won't say it's never happened because for all I know it has.) So this is a new situation for Deaf people to try to ensure their children will be 100% part of their own culture, the way many hearing parents want their children to be 100% part of their own culture.

From a pathological standpoint this must seem like madness. The reason I'm on the fence is because while I can understand parents' desire to have their children be exactly like them, Deaf parents have the ability to raise their children as fluent signers who are deeply involved with Deaf culture, in every way except being deaf. So making deaf children seems like overkill to me.

But then I think -- what if most black people gave birth to white children? And they raised them in black culture and everything but their skin was still white? And then an option became available to genetically modify their children so that they would be born black. Wouldn't they want that for their kids? Is it still ethical?

Etc.

Your point of view on the correlation on CIs and genetic modification is a good one.

I still dont think it would be ethical if a black couple modify their child's genes to ensure that the child is born with the same skin color.

I think the purpose of genetic modification should be used to eliminate life-threatening diseases.

 

[deafdyke]

the purpose of genetic modification should be used to eliminate life-threatening diseases.

Yes indeedy.......Like we're assumming that genetic modification will be benign and have no side effects. But the thing is, maybe if you messed with trying to correct a relatively benign "mutation", it might correct that mutation, but create other worse problems.
I think research should be focused on really bad problems, like depression, aleizheimers, quadupliegia etc etc.

 

[Nesmuth]

I think it's a stupid idea to tinker with embryos to create deaf people. Disability rights laws should have wording to exclude 'planned disabilities' from the protected class.

Richard

 

[Interpretrator]

Disability rights laws should have wording to exclude 'planned disabilities' from the protected class.

That's absurd. Whether or not this is ethical is obviously a matter of debate, and perhaps there should be legislation to regulate its use. However, it's completely ludicrous to discriminate against deaf people who are produced using this technology. That sounds a lot like that "old guard" you're constantly railing against, Richard. How about disability rights laws include wording to exclude hypocrites?

 

[Nesmuth]

I happen to be a mamber to a stem cell patient advisory council and believe me the society is very ambitious to cure disabilities. Creating deaf people for the purpose of keeping alive a very twisted culture is absurd.

It's natural you being an interpreter rely on the existence of deaf people to bring home the bread and butter, but, I've seen many interpreters take on career changes and they can be successful without depending on the existance of deaf people.

Richard

 

[shel90]

I happen to be a mamber to a stem cell patient advisory council and believe me the society is very ambitious to cure disabilities. Creating deaf people for the purpose of keeping alive a very twisted culture is absurd.

It's natural you being an interpreter rely on the existence of deaf people to bring home the bread and butter, but, I've seen many interpreters take on career changes and they can be successful without depending on the existance of deaf people.

Richard

Maybe I am going off topic here but suppose they do find a way to eliminate the deaf genes in the fetus and there is little or no deaf people in the future anymore since about 90% of deaf children are born to hearing parents? There has been talk of scientists discovering the deaf genes in the DNA.

I would be sad if that happened to be honest with u. Any feelings or comments about this possibility?

 

[Lillys dad]

Shel, they did find those "deaf Genes". Actually they are mutated protiens ( it think), anyway, the most common for senseoneural hearing loss in conexxin 26. There is another more rare one called conexxin 30. The 26 is by far the most common cause of a genetic hearing loss. This is what Lilly has. I am a carrier for it, and so is my wife. 1 in 30 Americans carry the gene. Its simply a game of two people that are carriers "hookin up".

 

[shel90]

Shel, they did find those "deaf Genes". Actually they are mutated protiens ( it think), anyway, the most common for senseoneural hearing loss in conexxin 26. There is another more rare one called conexxin 30. The 26 is by far the most common cause of a genetic hearing loss. This is what Lilly has. I am a carrier for it, and so is my wife. 1 in 30 Americans carry the gene. Its simply a game of two people that are carriers "hookin up".

I meant to say there has been talk of scientist discovering successful procedures in removing those "deaf genes".

My mom did tell me that her friend told her that she was lucky not to have a 3rd child after my mom told her she found the reason why my brother and I are deaf. Her friend told my mom how awful if she had a 3rd child with my dad and that child was born deaf. That is a mean thing to say to my mom, huh but some people just dont know how to be subtle!

 

[deafdyke]

believe me the society is very ambitious to cure disabilities.

Yeah, and? It doesn't mean that they WILL cure them. I think it will be a LONG LONG LONG time before disabilities are cured.

 

[Nesmuth]

Yeah, and? It doesn't mean that they WILL cure them. I think it will be a LONG LONG LONG time before disabilities are cured.

No, were close as 5 yrs to making it possible using stem cells.

Richard

 

[Interpretrator]

I happen to be a mamber to a stem cell patient advisory council and believe me the society is very ambitious to cure disabilities. Creating deaf people for the purpose of keeping alive a very twisted culture is absurd.

That's fine that you are not in favor of creating deafness using genetic technology. The part of what you said that I find cruel is punishing the deaf people who may be born as a result of their parents using this technology. Unborn children carry no fault for what their parents do. Would you deny treatment to a crack baby because her mother did drugs when she was pregnant?

It's natural you being an interpreter rely on the existence of deaf people to bring home the bread and butter, but, I've seen many interpreters take on career changes and they can be successful without depending on the existance of deaf people.

Of all the ugly things you've said on this forum, that's easily one of the ugliest. How dare you think you know my motives for being or remaining an interpreter, and how dare you imply that I'm in favor of this technology because I think it will keep me in a job. That is absolutely twisted. I posted this topic for the sake of a debate and you will note I never once stated a position in favor of it. Or actually you will not note it, because you conveniently ignore everything that doesn't suit your argument.

Just to blow open what you think you know about me, in fact I do not rely on interpreting to earn a living. If all need for interpreting suddenly vanished tomorrow, I would still be earning an income. So kindly shove it.

 

[Endymion]

I guess this is something we will have to trust and leave up to the ethicists.

I'm reminded of the archetypal consultant. Dressed sharp, armed with a graduate education, he is brilliant and empyrean in his specialty. His amazing plan comes loaded with 7.62 caliber, rapid-fire, low-recoil forecasting, triple-alloy pie and bar charts, and a double-barreled pump-action PowerPoint presentation.

And six times out of ten his clients go bankrupt.

Sure you want to leave it to the likes of his peers?

 

[jillio]

That was exactly my feeling. I'm not sure that CI implantation and genetic modification are really that far apart, in intent if not in level of technology.

Again, this isn't a judgment; I honestly don't come down on one side or the other of these arguments because I don't think it's possible to unilaterally declare them ethical or unethical. Every case should be taken on its own merits. The only thing I do think is, to paraphrase Jurassic Park, the evolution of new technologies seems to outpace the ethical debates that should govern them. I would like to see more public awareness and information about these kinds of issues.

Very well said, Interpreter. Anytime one undertakes to alter a natural state, whether to create sound perception, or to remove that perception, one creates ethical issues. And if it is ethical to implant a child to provide them with abilities that will better enable them to live in the hearing world, why would it be unethical to genetically engineer a child that would be better able to live in a deaf world. The only thing that changes is the perspective of hearing parent vs. deaf parent.

 

[jillio]

That's fine that you are not in favor of creating deafness using genetic technology. The part of what you said that I find cruel is punishing the deaf people who may be born as a result of their parents using this technology. Unborn children carry no fault for what their parents do. Would you deny treatment to a crack baby because her mother did drugs when she was pregnant?



Of all the ugly things you've said on this forum, that's easily one of the ugliest. How dare you think you know my motives for being or remaining an interpreter, and how dare you imply that I'm in favor of this technology because I think it will keep me in a job. That is absolutely twisted. I posted this topic for the sake of a debate and you will note I never once stated a position in favor of it. Or actually you will not note it, because you conveniently ignore everything that doesn't suit your argument.

Just to blow open what you think you know about me, in fact I do not rely on interpreting to earn a living. If all need for interpreting suddenly vanished tomorrow, I would still be earning an income. So kindly shove it.

Ive been subjected to Nesmuth's lack of couth as well. Anytime he can't support his opinion with fact and logic, he resorts to insult and attempts to intimidate. I've learned to simply see it as his recognition that his beliefs are often faulty. I'm not an interpreter as a profession, either, and my connection to the Daf community is through my Deaf son, yet he accused me of being against implantation in children because it would have an adverse effect on my income. Also accused me of being a horrible parent for my decisions. Whatever--just ignore his tirades!

 

[Nesmuth]

Ive been subjected to Nesmuth's lack of couth as well. Anytime he can't support his opinion with fact and logic, he resorts to insult and attempts to intimidate. I've learned to simply see it as his recognition that his beliefs are often faulty. I'm not an interpreter as a profession, either, and my connection to the Daf community is through my Deaf son, yet he accused me of being against implantation in children because it would have an adverse effect on my income. Also accused me of being a horrible parent for my decisions. Whatever--just ignore his tirades!

 

[Interpretrator]

Excellent comeback, Richard. I suppose by this...

And its exacerbated by the deaf community's hostility towards written English.

...you were including yourself.

 

[rockdrummer]

I think it's a stupid idea to tinker with embryos to create deaf people. Disability rights laws should have wording to exclude 'planned disabilities' from the protected class.

Richard

It's funny that I got my butt chewed for calling deafness a disability when I first joined here. I am still not clear on the deaf community's stance on this. And please, don't anybody take that personally. Nesmuth, would your comment change if deafness was not considered a disability?

 

[deafdyke]

No, were close as 5 yrs to making it possible using stem cells.

Nesmuth, the stem cell research is more.......a thing for which almost anything is possible, but nothing is 100% promised. Sheesh.....don't you remember that Chinese doctor who claimed he could "cure" paralysis, but it turned out to be a load of shit?
Yes, stem cells have the potentional to cure a lot of late deafened folks.....but I think that the research will find that the pedatric cases are a lot more complicated. There;s an Oliver Sacks case study, that I think you should read. It's about a blind guy who had surgery so he could see normally. Unfortunatly he couldn't see normally b/c his brain could not interpret sight the way a sighted person would.
Also, I don't think that the hearing aid and CI companies will want to give up their profits. You're too optimistic....I don't think you really realize how politcally controled the FDA is.

 

[kayla123]

I've been reading this thread and i can't believe some of what i am reading. A lot of people on this site have talked about the hard times they've had growing up being dhh, especially when they were in school and yet some still think that the concept of intentionally creating deaf babies is ok. Some people call the hearing parents selfish for implanting their children but we are trying to provide a tool that is going to make life easier not harder. I'm sorry but if someone thinks that making your baby deaf on purpose after knowing what you went through growing up is ok, then i think that is a very selfish act.

 

[Interpretrator]

A lot of people on this site have talked about the hard times they've had growing up being dhh, especially when they were in school and yet some still think that the concept of intentionally creating deaf babies is ok.

Yeah, I think that's what is hard to get past, that you are intentionally creating barriers for your kids. But to play devil's advocate, suppose you were a Deaf person who had had a wonderful childhood full of ASL and Deaf culture, and you had a spouse who had the same experience, and you honestly didn't feel that there was anything wrong with being deaf, and you wanted your kid to be part of that?

I would never do anything like this myself, because as someone pointed out there's no telling yet what the long-term implications of genetic alteration might be, but I don't feel qualified to tell someone in my example that they're wrong, because I can never be in their shoes.

Just a thought. I don't mean to say you're wrong in how you feel.