UK Deaf Embryo Debate relating to recent bill in parliament

[Aleser]

No, I'm not saying that parents want you to give your permission. I'm saying that calling them "child abusers" and "murderers" is not helping their children nor does it help the deaf community. You also make it sound like the children are dying of meningitis in droves but actually it's relatively rare (although very publicised) and it's preventable. I can understand anger at a parent who doesn't vaccinate though.

Now, since you brought up meningitis what you do you think about the fact that meningitis incidence is at least 4 times more common with deaf children even without CIs compared to hearing children? Wouldn't this be a potential additional risky problem for children with those affected etiologies who are deliberately conceived as deaf through IVF? How do you feel about that?

Uh... yeah, not happening. The risk of meningitis in Deaf children is distinctly linked to the whole drilling holes in heads without vaccinating thing. It's not something you're just born with. Even if the parent does the responsible thing and vaccinates, NO vaccine is 100%! There are still other risks involved in surgery, meningitis aside, and all.

I call people who kill other people murders. There's no better word for risking a human being's life, without their consent, in pursuit of their 'normality'. If it's one in ten or one in a million- it's a life.

 

[Aleser]

Deaf people are not being prevented from having children or having deaf babies naturally.

This statement is becoming less and less true. Embyro storing for a multitude of purposes, from career choices to cancer treatments and infertility issues, is becoming much more common.

In that same breath, pre-implantation diagnosis of genetic disorders is already quite common, and will without doubt emerge as the standard within years as more and more formally "infertile" couples or couples put off of having children for career pursuits are being provided viable optons of having a child.

Pre-implantation isn't just about finding out your kid is Deaf. Pre-implantation diagnosis is about finding out if your child has an honestly zero life-quality illness, like infantile tay sachs or whatnot. The chance of having both familial deafness and tay sachs genes isn't as rare as one might think- especially from those who come from ashkenazi jewish ancestry, to name an example.

What if that couple -wants- a deaf child without wanting to risk the horrors of having a child with tay sachs? Pre-implantation diagnosis would be the option that this law bars.


I realize that this law allows for a deaf couple to go ahead and have a deaf child the good old fashioned way- but what about those who can't, or don't want to?

It's not just about limiting the amounts of deaf people who are born- it's about the law presuming to have the power to tell us what kinds of children we can have and love. It's about the law telling us that we must evade regular and intelligent genetic testing for fear of being refused our own child.

 

[R2D2]

I realize that this law allows for a deaf couple to go ahead and have a deaf child the good old fashioned way- but what about those who can't, or don't want to?

For those deaf people that can't have children naturally, the bill still allows them to use IVF but they can't use PGD to pick and choose the embryos in order to only transfer the deaf gene embryos. PGD is simply an additional procedure to straightforward IVF. In straightforward IVF the best looking embryos, regardless of whether or not they have genetic conditions are transferred - so basically there is the same odds for deafness as with natural conception.

I did read about a fertile deaf couple in Australia who used PGD in order to only transfer hearing embryos in the paper and thought that it was a bit sad. They both said they had struggled long and hard in their lives and didn't want it for their children. This to me is a double standard. Both ways bother me. Also, it bothers me when people have IVF so that they can have a girl or boy children for cultural reasons only. Life threatening conditions are another matter though.

I agree with your other comments that PGD is becoming more prominent and I sympathise that while this bill doesn't actually prevent deaf people from having children, it's certainly reducing their choices in a way that is not being done for parents with no genetic conditions. It also implies that a deaf life is all doom and gloom.

It's not just about limiting the amounts of deaf people who are born- it's about the law presuming to have the power to tell us what kinds of children we can have and love. It's about the law telling us that we must evade regular and intelligent genetic testing for fear of being refused our own child.

Just a small correction. It's not refusing deaf people their own child as they can still have IVF if they are infertile, but it does no doubt reduce their choice to deliberately have a deaf child or more accurately, a child who carries genes that sometimes result in deafness.

 

[R2D2]

Uh... yeah, not happening. The risk of meningitis in Deaf children is distinctly linked to the whole drilling holes in heads without vaccinating thing. It's not something you're just born with. Even if the parent does the responsible thing and vaccinates, NO vaccine is 100%! There are still other risks involved in surgery, meningitis aside, and all.

I call people who kill other people murders. There's no better word for risking a human being's life, without their consent, in pursuit of their 'normality'. If it's one in ten or one in a million- it's a life.

I'm not sure if you know this, but deaf children as a group even without CI surgery are more susceptible to contracting meningitis - possibly related to their etiologies. There was a Danish study that indicated that the risk was possibly up to 12 times that of the hearing population. I accept that CI surgery adds to this risk but the risk is already there and so this would have possible implications for anyone who tries to only have deaf children.

A murderer is someone who intends to kill and takes about action to do so in a direct way. "Manslaughter" is a better term for someone who kills through irresponsibility. But even then, I would find it too heartless to use this term either for a grieving parent who had a child with a CI or for a parent who deliberately conceived a deaf baby through PGD.

Death from CI surgery asside from meningitis is rare. No more than that for other minor surgeries in general.

I'm just asking myself again how have I ended up talking about CIs again? Going off topic again LOL!

 

[R2D2]

So you admitted that the idea of all deaf people (including you) will be euthanased is very possible? That included senior people who lost some or all of the hearing??

No, I don't think this will happen in this day and age because consent is everything. I was just reflecting on your own thoughts.

 

[R2D2]

Meningitis is more common in the deaf children??? I haven't seen a report where it clearly separated the hearing kids who became deaf due to meningitis and deaf kids who got meningitis after getting CI from all other deaf people. I suspect they lumped those two groups with all other deaf people.

I don't agree. The association between CIs and meningitis has been well known for years and it would have been stated if those children that were studied had CIs or first became deaf only after contracting meningitis. That would be a critical aspect of control for designing the study. The Danish study was publicised in 2007, I think.

 

[Buffalo]

Yes, in the UK, value for money is everything when it involves taxpayers' funds. Everything that implies some sort of burden on the state either in the short term or long term goes through this scrutiny. They look at cochlear implants and there is even debate as to whether infertile people should have access to IVF treatment, because it's argued to be a lifestyle thing rather than a lifethreatening disease even though infertile women experience severe emotional stress.

I see that they are thinking of this and still get their way. I can see how easy it is to prevent the infertile undesirables from multiplying by keeping them in menial jobs so they can't afford to leave UK for an IVF treatment. Like I said before, they are starting to chip at the disabled's rights. I still maintain that once there are very few deaf people, the discrimination against them will increase. I just can't forget that the Nazis went after the German disabled people first before going after Jewish/Gypsy disabled people (Harry Freidlander's "The Origins of Nazi Genocide: From Euthanasia to the Final Solution"). The handicapped people are first in the line at the start of eugenics/euthanasia. The British has the history of racial discrimination. Just look at the colonies of the past. Example of India - BRIA(16:3) Free Speech Movement, Berkeley, Mahatma Gandhi, British Empire, anti-abortion rescue movement, protest, civil disobedience (Go down to: Bringing Down an Empire: Gandhi and Civil Disobedience) This is a very combustible stituation. The British had fought the Nazis so why start copying them now?

Why do the hearing people do not see the problem and we do? This is no brainer. So easy to see.

Just remember this scripture verse: The Love of the Money is the root of all evil.