UK Deaf Embryo Debate relating to recent bill in parliament

[kate-a]

Hi

I am writing from a UK based television production company. We are currently working on a documentary about the IVF embryo issues arising out of Human Fertilisation and Embryology Bill currently being debated in the UK parliament. For those who don’t know the full details, it is a section of Clause 14 we are looking at which reads as follows:

“(9) Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop—
(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition,
must not be preferred to those that are not known to have such an abnormality.”

Deafness would be included as an ‘abnormality’, therefore any parents would be forced to choose embryos with hearing genes as opposed to those with deaf genes. This is further elaborated upon in the official explanatory notes of the bill…

“Clause 14(4) contains a provision that relates to the provisions on embryo testing (see note on clause 11). New sections 13(8) to (11) amend the 1990 Act to make it a condition of a treatment licence that embryos that are known to have an abnormality (including a gender-related abnormality) are not to be preferred to embryos not known to have such an abnormality. The same restriction is also applied to the selection of persons as gamete or embryo donors. This would prevent similar situations to cases, outside the UK, where positive selection of deaf donors in order deliberately to result in a deaf child have been reported”

As many of you will be aware, a lot of people in the UK are against this bill, as they feel they are being forced to selectively breed out deafness where there is an option. Many simply believe that picking either deaf or hearing embryos should be a choice to be made by the parents as opposed to a dictate made by the government. Some campaigners think this is even a form of eugenics.

We would really like to speak to somebody who feels they would choose the deaf embryo given the choice, and give them a chance to explain their reasons for doing so. Or somebody who has already made that choice or is in the process of undergoing IVF at the moment. We understand this is a contentious issue for some, and assure you we will be dealing with this issue responsibly and sensitively. We will be presenting all sides to the argument and are not trying to imply this would be a choice made the majority in the deaf community, but just an individual’s. The director is an award winning UK filmmaker with a reputation for intelligent, responsible journalism. We would also like to hear from deaf people who support this clause and anyone else with strong feelings about the issue.

Please contact me at this email address: kate@popkorntv.com and let me know if you have any queries. We are only in the research stage, so everything is off the record and there’s no obligation to take part in the film if you’re undecided.

Thank you

Kate
kate@popkorntv.com

 

[Buffalo]

It is eugenics backed by a huge dose of ethnocentric. I would love to know who came up with the Clause 14. It reminds me of the Eugenics Movement in USA and the Holocaust during Nazi regime. A blast from the past! Those people who came up with that kind of law and those who passed them tend to think of the disabled as a burden on the society. They think it will be the best if all of those people just disappeared. They forgot one thing. They forgot they are the ones who are a burden on us deaf people in form of discrimination, passed us over for the promotion, refusing to learn sign language in order to communicate with us. (It still exists in spite of the ADA laws.) If it is okay to get rid of people that one considers to be a burdensome so is it okay for us to get rid of those who refused to sign language???? Remember the Golden Rule?

I believe that it started with cochlear implants. The deaf people tend to see it as trying to change a deaf child into a hearing child. Some of those poor kids have died due to the complications from cochlear implants like meningitis. One death is too much for me. If it is okay for the hearing people to change the deaf kid into the hearing kid so they are more like the parents, then why it's not okay for us to do the same with a person with deaf genes. We aren't putting a knife to the child's head like they are doing with the cochlear implantation. One doesn't died from deafness.

I am an American so all I can do is protest this online. I am on the side of the British deaf people on this. How do you like if one tells you you have to take somebody's ovum in place of yours because of your deaf genes. That is like telling you that you are not valued as a person, not considered as a full person. They are starting to chip at our rights bits by bits. We have to put the kibosh on this. We need to have a deaf population around in the future because there are deaf people that cochlear implant can't help them at all like being born without cochlear nerves. I know they came up with auditory brain stem implant. I just think they are crazy for coming up with it as the brain stem is the most important part and they want to tinker with it! Once there are far few deaf people, the discrimination against the deaf people will increase.

It is their attitude toward us that need to be changed. The sign language is working perfectly well but they continued to ignore that angle. This is no brainer!

 

[shel90]

It is eugenics backed by a huge dose of ethnocentric. I would love to know who came up with the Clause 14. It reminds me of the Eugenics Movement in USA and the Holocaust during Nazi regime. A blast from the past! Those people who came up with that kind of law and those who passed them tend to think of the disabled as a burden on the society. They think it will be the best if all of those people just disappeared. They forgot one thing. They forgot they are the ones who are a burden on us deaf people in form of discrimination, passed us over for the promotion, refusing to learn sign language in order to communicate with us. (It still exists in spite of the ADA laws.) If it is okay to get rid of people that one considers to be a burdensome so is it okay for us to get rid of those who refused to sign language???? Remember the Golden Rule?

I believe that it started with cochlear implants. The deaf people tend to see it as trying to change a deaf child into a hearing child. Some of those poor kids have died due to the complications from cochlear implants like meningitis. One death is too much for me. If it is okay for the hearing people to change the deaf kid into the hearing kid so they are more like the parents, then why it's not okay for us to do the same with a person with deaf genes. We aren't putting a knife to the child's head like they are doing with the cochlear implantation. One doesn't died from deafness.

I am an American so all I can do is protest this online. I am on the side of the British deaf people on this. How do you like if one tells you you have to take somebody's ovum in place of yours because of your deaf genes. That is like telling you that you are not valued as a person, not considered as a full person. They are starting to chip at our rights bits by bits. We have to put the kibosh on this. We need to have a deaf population around in the future because there are deaf people that cochlear implant can't help them at all like being born without cochlear nerves. I know they came up with auditory brain stem implant. I just think they are crazy for coming up with it as the brain stem is the most important part and they want to tinker with it! Once there are far few deaf people, the discrimination against the deaf people will increase.

It is their attitude toward us that need to be changed. The sign language is working perfectly well but they continued to ignore that angle. This is no brainer!

 

[jillio]

Yep. Looks like A G. Bell has been reincarnated in Great Britain.

 

[R2D2]

Can someone please clarify for me whether this bill is trying to:

1) Stop any deliberate attempt to have a deaf baby only i.e. fertile people using IVF procedures to screen out all embryos that do not carry the deaf gene and discarding them, therefore only transferring deaf embryos.

OR

2) Identifying all those parents and donors who are in the IVF process because of infertility who carry genes that may result in deafness and then forcing them to have PGD on their embryos and not permitting them to transfer otherwise good quality embryos but which may have the deaf gene.

I would not have a problem with number 1. I can understand why there would be concern from a deliberate attempt by fertile people to create a child with a disability because of the social costs that come with it.

I would have a big problem with number 2. It is very intrusive and does imply eugenics. It effectively says to me that a deaf person is better off not existing.

I think most posters on here are assuming option 2 but I am not sure if that assumption is correct.

 

[R2D2]

It is
I believe that it started with cochlear implants. The deaf people tend to see it as trying to change a deaf child into a hearing child. Some of those poor kids have died due to the complications from cochlear implants like meningitis. One death is too much for me. If it is okay for the hearing people to change the deaf kid into the hearing kid so they are more like the parents, then why it's not okay for us to do the same with a person with deaf genes. We aren't putting a knife to the child's head like they are doing with the cochlear implantation. One doesn't died from deafness.

This is a poor and extreme comparison. Children who get CIs are not being deliberately killed or deemed not worthy of life and the complications that you mention were not intended and usually the parents/surgeons of those unfortunate children would feel great sorrow rather than celebration.

As you know, CIs do not in themselves change deaf people into hearing people either. A deaf person with a CI is still deaf. This viewpoint smacks of non CI users being "deafer than thou" (but it's okay to have hearing aids isn't it?).

 

[R2D2]

I had a quick google and it looks like the bill is aimed at fertile people who want to use IVF to deliberately create babies with deafness rather than have sex the usual way and accept what they get by nature.

My personal opinion is that people should be happy with and accept the children that are born to them naturally (whether deaf or hearing).

How will the child resulting from such a procedure feel when they find out that they were only "selected" because they had a characteristic that the parents specifically wanted and that had they not had that characteristic they would have been discarded? Not too great!

To me it's no different from eugenics - except that it's not blond hair or blue eyes but something else that the parents want.

 

[Buffalo]

Can someone please clarify for me whether this bill is trying to:

1) Stop any deliberate attempt to have a deaf baby only i.e. fertile people using IVF procedures to screen out all embryos that do not carry the deaf gene and discarding them, therefore only transferring deaf embryos.

OR

2) Identifying all those parents and donors who are in the IVF process because of infertility who carry genes that may result in deafness and then forcing them to have PGD on their embryos and not permitting them to transfer otherwise good quality embryos but which may have the deaf gene.

I would not have a problem with number 1. I can understand why there would be concern from a deliberate attempt by fertile people to create a child with a disability because of the social costs that come with it.

I would have a big problem with number 2. It is very intrusive and does imply eugenics. It effectively says to me that a deaf person is better off not existing.

I think most posters on here are assuming option 2 but I am not sure if that assumption is correct.

I have a big problem with both numbers. I will only explain my reason for the number 1 in here. Why it is okay for a hearing parent with a deaf gene to screen out all embryos with deaf gene but it is not okay for a deaf parent to do the same but in reversal? That is a double standard.

I understand that the sperm bank will throw away any sperm that come from a deaf man. How can a single deaf woman who want a deaf baby get pregnant?? She has less right than a hearing woman and I don't like that.

I don't want eugenics gaining a toehold. I want to see a deaf person to have an equal right as a hearing person. I don't want a deaf person to have less rights just because of who s/he is or his/her preference is different (as in wanting a deaf baby).

We do need deaf community. We can help out anybody who lost hearing. They will have to put in television captions for us and that also helps out senior citizens who had lost hearing. If the deaf community disappear overnight, the fringe benefit for senior citizens and other with hearing loss will disappear too. That is why I believe that discrimination against deaf people will increase. It is hearing people who create this condition that makes things difficult for us and will continue to do so.

 

[Buffalo]

This is a poor and extreme comparison. Children who get CIs are not being deliberately killed or deemed not worthy of life and the complications that you mention were not intended and usually the parents/surgeons of those unfortunate children would feel great sorrow rather than celebration.

As you know, CIs do not in themselves change deaf people into hearing people either. A deaf person with a CI is still deaf. This viewpoint smacks of non CI users being "deafer than thou" (but it's okay to have hearing aids isn't it?).

Where did I said that the parents see the death of a child as celebration??? That is coming from you, not me. I do know that parents do turn a blind eye to the small chance of death. They were way too willing to make the kid hearing as possible. Some of them parents even forbade sign language. I have seen one CI website where it advises parents not to sign. This is insane due to chance of CI not working or fail to work in the future. There are parents who would believe that CI make the deaf kid hearing. Those are usually the ones who are in a big denial that the kid is deaf.

I know that there are deaf oralists who look down on us deaf people because they can speak therefore there are good chance of CIers who look down on us deaf people. I know only one CIer personally and I avoid him long before he got the CI.

 

[Buffalo]

I had a quick google and it looks like the bill is aimed at fertile people who want to use IVF to deliberately create babies with deafness rather than have sex the usual way and accept what they get by nature.

My personal opinion is that people should be happy with and accept the children that are born to them naturally (whether deaf or hearing).

How will the child resulting from such a procedure feel when they find out that they were only "selected" because they had a characteristic that the parents specifically wanted and that had they not had that characteristic they would have been discarded? Not too great!

To me it's no different from eugenics - except that it's not blond hair or blue eyes but something else that the parents want.

Why should we go by hearing people's standard not ours? A Little Person can't have a LP baby???? Why should we allow the hearing people shove their standard down our collective throat??? So they think deafness is a disability. I think the inability to sign is a disability itself. It shows their lack of intelligence. If they have the right to do away with deaf people, then they better let us have the right to do way with hearing people. Maybe that is better for the earth if there is no more human. Too many people are polluting the earth.

You think people should be happy with and accept the children that are born to them naturally?????? Tell that to those who aborted their baby when the test turn up Down's sydrome or anything like that.

If I am that deaf child that was resulted of that IVF, I would understand that and most likely saying "Yaaaaayyy!".

 

[Buffalo]

There is one more thing I'd like to add. The British has abolished the death penalty. So the convicted murderer get to live while the deaf embryo, with potential of being a good citizen, doesn't get to live.

It is obivious to me that they think they are saving the money by passing the Clause 14. May I remind you about this bibical verse "the love of money is the root of all evil". Clause 14 is a stepping stone to eugenics and euthanasia.

All this make me think of the book that I want to read: "The Lucifer Effect" by Philip Zimbardo.

 

[R2D2]

I have a big problem with both numbers. I will only explain my reason for the number 1 in here. Why it is okay for a hearing parent with a deaf gene to screen out all embryos with deaf gene but it is not okay for a deaf parent to do the same but in reversal? That is a double standard.

I agree with you and actually as someone who went through IVF to conceive our daughter I can tell you that I was actually offered this choice. I said "no" because I find it morally repugnant. I got a hearing daughter from the IVF anyway ironically enough. I believe that PGD is good for lifethreatening conditions but deafness, no.

However, I can understand why a social policy maker (whose role in the UK is to do everything for the social good) would draw the line at deliberate use of IVF (some of which is publically funded) by fertile people to create deaf embryos. Deaf people are more expensive from a social policy point of view than hearing people - that is a fact. It doesn't matter whether a child has a CI, is oral or signs - both cost substantially more tax pounds. In the US you have very much an individual rights viewpoint but in the UK the outlook is different, it's all about what is good for the country. That is why they have a socialised medical sector there.

 

[R2D2]

There is one more thing I'd like to add. The British has abolished the death penalty. So the convicted murderer get to live while the deaf embryo, with potential of being a good citizen, doesn't get to live.

It is obivious to me that they think they are saving the money by passing the Clause 14. May I remind you about this bibical verse "the love of money is the root of all evil". Clause 14 is a stepping stone to eugenics and euthanasia.

All this make me think of the book that I want to read: "The Lucifer Effect" by Philip Zimbardo.

I think you are going to a broader issue here about when does it become "murder". Pro life people believe that life begins at the moment of conception and I guess this your point of view. However, others do not believe that a 5 day old cell is murder. So it depends on your beliefs. I don't think it's murder but for me it's the principle of whether or not a deaf life is worth living and I believe that it is.

And yes, the bill is about trying to save social funds.

 

[R2D2]

Where did I said that the parents see the death of a child as celebration??? That is coming from you, not me. I do know that parents do turn a blind eye to the small chance of death. They were way too willing to make the kid hearing as possible. Some of them parents even forbade sign language. I have seen one CI website where it advises parents not to sign. This is insane due to chance of CI not working or fail to work in the future. There are parents who would believe that CI make the deaf kid hearing. Those are usually the ones who are in a big denial that the kid is deaf.

I know that there are deaf oralists who look down on us deaf people because they can speak therefore there are good chance of CIers who look down on us deaf people. I know only one CIer personally and I avoid him long before he got the CI.

Your objection is against oralism. There are parents of children who have CIs who also learn to sign. There are parents of children with hearing aids who mainstream and don't sign. What's the difference?? I don't understand your fixation with CIs and it's very sad that you are avoiding your friend with a CI. I guess your friendship was conditional on him doing all the right things to make you happy?

 

[Buffalo]

I agree with you and actually as someone who went through IVF to conceive our daughter I can tell you that I was actually offered this choice. I said "no" because I find it morally repugnant. I got a hearing daughter from the IVF anyway ironically enough. I believe that PGD is good for lifethreatening conditions but deafness, no.

However, I can understand why a social policy maker (whose role in the UK is to do everything for the social good) would draw the line at deliberate use of IVF (some of which is publically funded) by fertile people to create deaf embryos. Deaf people are more expensive from a social policy point of view than hearing people - that is a fact. It doesn't matter whether a child has a CI, is oral or signs - both cost substantially more tax pounds. In the US you have very much an individual rights viewpoint but in the UK the outlook is different, it's all about what is good for the country. That is why they have a socialised medical sector there.

The deaf people are more expensive because the hearing society made it so. The hearing parents demand hearing aids, CI and speech therapies. Someone said "it is a hearing world" and that is why this world is not conducive to the deaf people. Why is the social policy maker not working on that angle???? The proof is the Martha's Vineyard in the old days. The richest man at that time happened to be deaf. That island was really conducive to the deaf people there. No brainer!

 

[Buffalo]

I think you are going to a broader issue here about when does it become "murder". Pro life people believe that life begins at the moment of conception and I guess this your point of view. However, others do not believe that a 5 day old cell is murder. So it depends on your beliefs. I don't think it's murder but for me it's the principle of whether or not a deaf life is worth living and I believe that it is.

And yes, the bill is about trying to save social funds.

In that case, I am sorry to say that the UK is on the way to eugenics and maybe even euthanasia, all just to save some pounds.

You think the convicted murderer is worth living? Living on the taxpayer's dime while in jail?

 

[SxyPorkie]

It is eugenics backed by a huge dose of ethnocentric. I would love to know who came up with the Clause 14. It reminds me of the Eugenics Movement in USA and the Holocaust during Nazi regime. A blast from the past! Those people who came up with that kind of law and those who passed them tend to think of the disabled as a burden on the society. They think it will be the best if all of those people just disappeared. They forgot one thing. They forgot they are the ones who are a burden on us deaf people in form of discrimination, passed us over for the promotion, refusing to learn sign language in order to communicate with us. (It still exists in spite of the ADA laws.) If it is okay to get rid of people that one considers to be a burdensome so is it okay for us to get rid of those who refused to sign language???? Remember the Golden Rule?

I believe that it started with cochlear implants. The deaf people tend to see it as trying to change a deaf child into a hearing child. Some of those poor kids have died due to the complications from cochlear implants like meningitis. One death is too much for me. If it is okay for the hearing people to change the deaf kid into the hearing kid so they are more like the parents, then why it's not okay for us to do the same with a person with deaf genes. We aren't putting a knife to the child's head like they are doing with the cochlear implantation. One doesn't died from deafness.

I am an American so all I can do is protest this online. I am on the side of the British deaf people on this. How do you like if one tells you you have to take somebody's ovum in place of yours because of your deaf genes. That is like telling you that you are not valued as a person, not considered as a full person. They are starting to chip at our rights bits by bits. We have to put the kibosh on this. We need to have a deaf population around in the future because there are deaf people that cochlear implant can't help them at all like being born without cochlear nerves. I know they came up with auditory brain stem implant. I just think they are crazy for coming up with it as the brain stem is the most important part and they want to tinker with it! Once there are far few deaf people, the discrimination against the deaf people will increase.

It is their attitude toward us that need to be changed. The sign language is working perfectly well but they continued to ignore that angle. This is no brainer!

DITTO... I agree with you... it is like murdering all emybros...

 

[Buffalo]

Your objection is against oralism. There are parents of children who have CIs who also learn to sign. There are parents of children with hearing aids who mainstream and don't sign. What's the difference?? I don't understand your fixation with CIs and it's very sad that you are avoiding your friend with a CI. I guess your friendship was conditional on him doing all the right things to make you happy?

I am not against oralism as long as it comes with sign language. It is pro-oralism that I am against. Big difference. One death due to CI directly or indirectly is too much for me. Why should a deaf child died trying to live up to the hearing standard? It is like a woman starving herself so she could live up to the standard of thinness which is real dumb.

Reread my statement about the guy with CI. I avoid him long before he got his CI. He is really a major jerk. I first met him at the college and he happened to be from the same state I came from. He got expelled from the college for good. When he and his very pregnant wife arrived at my friend's apartment, he walked in and sit on the only chair available. I can see his wife's expression. I gave her my seat on the couch and end up sitting on a small footstool. Small wonder she divorced him and taking their child back to her home state. He has remarried and had another kid. A friend told me that he was thinking about reporting him to the child service. That is why I avoid him like crazy. This had nothing to do with CI.

 

[Aleser]

One death due to CI directly or indirectly is too much for me.

Exactly! This is why I don't support implantation in children. The fact that their parents would be willing to risk EVERYTHING that comes with the fact that someone is sticking something -into their child-, a surgical procedure with all the risks of anesthesia, for a procedure they do not medically need.. is repulsive to me.

It is never a risk worth taking! If you're an adult and you want to drill holes anywhere in your body, by all means go ahead. But for the parent of a child who should be looking after their interests and doing everything possible to protect them from harm... that's just abuse, in my books.

One child dying from a procedure they are not old enough or capable of consenting to, nor in medical need of, isn't just a tragedy. It's murder.

 

[Buffalo]

Exactly! This is why I don't support implantation in children. The fact that their parents would be willing to risk EVERYTHING that comes with the fact that someone is sticking something -into their child-, a surgical procedure with all the risks of anesthesia, for a procedure they do not medically need.. is repulsive to me.

It is never a risk worth taking! If you're an adult and you want to drill holes anywhere in your body, by all means go ahead. But for the parent of a child who should be looking after their interests and doing everything possible to protect them from harm... that's just abuse, in my books.

One child dying from a procedure they are not old enough or capable of consenting to, nor in medical need of, isn't just a tragedy. It's murder.

You said it better than I can. Thanks for the word of support, Aleser