Human Fertilisation and Embryology Bill ~ your views please!

14 02 2008

This request appeared on the Deaf Village, asking for your opinions. If you’re interested in having your opinion heard, please contact Kate.

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 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’ in this law, 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 some of you probably aware, many in the UK are against this bill, as they feel they are being forced to selectively breed out deafness where there is an option. Some we have spoken to 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. Others think this can be seen a form of eugenics.

We would really like to speak to deaf people from any country who feel that given the choice they would choose the deaf embryo, and discuss 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, 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 at 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.

Thank you

Kate
kate at popkorntv.com

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13 responses

14 02 2008
Fintan

Yeah , everyone given their views but that thread got locked!

14 02 2008
funnyoldlife

Why? This thread isn’t! Everyone is entitled to have an opinion.

14 02 2008
Smarty

A lot of nonsense has already been written on this subject by those on both sides of the argument simply because people don’t understand the science and/or have no awareness of what it means to be Deaf.

I got a text message about a march that will take place next month to campaign against the ‘removal of deaf gene’. But this isnt really whats happening. The new act will prevent couples from being able to choose to implant a deaf embryo if they undergo IVF treatment.

My view is that is fine (as I wouldnt advocate deaf couples doing this) BUT its a shame that IVF treatment will still be used to eliminate the possibility of a deaf baby…is deafness really a trait that needs thousands of pounds of IVF treatment spent on making sure that a couple’s offspring doesn’t have it? Thus, sending out a message to society that its something that needs to be eliminated and its better to be hearing….

14 02 2008
MM

They won’t find anyone…

21 02 2008
macian

all I can answer to your post smarty is YES. of course, why is it any differnt to any other disabilty? seems like the deaf are the only ones fighting to stay disabled, I for one can’t work out out why.
I know the embyro thing is differnt, but I firmly believe anyone who wishes to choose the deaf embyro over a hearing, is not fit to be a parent.

22 02 2008
Smarty

Macian – your comments seem to suggest that you don’t have a clue what it feels like to be a Deaf person – we are not just talking about not having hearing here but the whole cultural and social aspect to it.

You also seem to think of disability as a very negative thing which is a shame – for many people it can be very positive whether they are blind or in a wheelchair etc…Deaf people are not fighting to be disabled – in fact, the opposite.

23 02 2008
macian

well smarty, I am profoundly deaf, so yes I don’t have a clue what it’s like to be “Deaf” the cultural and social aspect of it was in my belief built around necessity, creating a society from need rather than want as there was no way to communciate with the full hearing society, no matter how anyone describes it, it is a disability, it’s such a shame some frightened people wish others to shun change to keep them within their social reach, i for one am not suggesting anyone shunning the Deaf world, more to embrace both.

and I understand where you are coming from with your comments “You also seem to think of disability as a very negative thing which is a shame ” although I don’t agree with them, it’s easy for people who are in the Deaf culture to assume this, but for one like many of us HOH/profoundly deaf who don’t have access to this, it’s wishful thinking.
I will make an attempt later this year to learn sign, I’ve met a few wonderfull deaf people and would love to communicate with them other than writing, but I have no wish to channel myself into a small community, I want to be in both.
and for this comment
“for many people it can be very positive whether they are blind or in a wheelchair etc…Deaf people are not fighting to be disabled – in fact, the opposite.”
well i can’t undertsand your reasoning behind this, ask any blind, wheelchair bound etc if they would rather stay that way or take any opportunity to relieve them of their disabilty, i don’t think you’d have many takers, perhaps I miss your point, and certainly wouldn’t be my first time, so perhaps you could elaborate?
because in a view none of them are fighting to keep a cultural,social ect base within a small world, but learning to adapt, like I am.
I hope you don’t find this arguementive, I’m not in any way saying my view is the yardrule, far from it, i would like to hear other views on this, my mind isn’t shut off to change.

24 02 2008
Smarty

Macian – yes you are missing my point. You can either look at disability as whats wrong with the PERSON (i.e. they cant see or cant hear) or you can see it as whats wrong with SOCIETY (i.e. people believing you can’t communicate with them, lack of subtitles etc) I prefer the latter.

Being deaf plays a big part in the person I have turned out to be. If I was hearing – I’d probably be quite different. I don’t want that – I enjoy having the perspective on the world that I do….who knows, maybe if I lived in a society that was completely inaccessible for deaf people I would be saying something different.

I’m sorry you feel that Deaf culture is inaccessible to you – its a shame a lot of oral people feel like that…..but its not much different from you trying to settle in a French village as an English person. If you learn the language, are patient and respect their culture you will win friends within the community.

24 02 2008
macian

a very good point Smarty, I totally agree with this

“Being deaf plays a big part in the person I have turned out to be. If I was hearing – I’d probably be quite different”

25 02 2008
MM

I think smarty just switches the argument to ‘blaming’ hearing for the fact you can’t hear. Being deaf produces very obvious barriers to communication, no amount of access will be a cure for it all, there will still be a significant majority who won’t fit in with or will struggle in mainstream, or indeed demand to stay out if that is their preference and remain with the ‘community’. If they choose the latter option and stay with other deaf people, then they cannot legitimately claim they are being excluded. If we all get text/sign and other support, there are still a sector of deaf who WON’T go the integration route, and that choice will have nothing to do with exclusion. In fact they undermine exclusion by highlighting this ‘choice’. I want this access and that access, however I may use it or I may not but it has got to be there, doesn’t fit with realism, mainstream provide access on a use it or lose it basis, then, those that want more inclusion are then fighting on two fronts, and against other deaf, it needs sorting out. Access is indeed a right, but if you are not going to use it….

25 02 2008
Smarty

MM – its not about apportioning blame. Most people in this country believe in a fair and equal society….if we take the attitude that being deaf a problem/defect that we have and that we should be grateful for getting any access at all then we will get nowhere.

I’m not sure who you are referring to when you talk about Deaf people who are not interested in inclusion….why should Deaf people have to choose between their community and the outside world – why not access both?

25 02 2008
macian

My point exactly smarty, if they get a CI/baha etc, they then “may” have access to both worlds, so why are alot of the Deaf calling them turncoats? they are not closing a door but rather opening another, broadening their horizons whatever way you want to say it, but they are not turning their back on the Deaf world.

I don’t think these comments of yours are fair though
“if we take the attitude that being deaf a problem/defect that we have and that we should be grateful for getting any access at all then we will get nowhere.”

being deaf/Deaf hoh is obviously a defect(hearing) no one an deny that, but your second point tagged on to this is a bit unfair, who said we should be grateful? I haven’t come across anyoen sayign that as of yet.
there’s also 2 points there, I don’t agree with either of them and think it’s unfair you are trying to band them together taking away the choice of anyone who might agree with one but not the other.

26 02 2008
Smarty

If you want to see being deaf or hard of hearing as something that is wrong with you then fine but I see ‘impairments’ as being a normal part of society – after all, its pretty common – 1 in 7 can be considered deaf or HOH.

Now obviously being deaf presents a lot of barriers. Your solution to these barriers is to find a ‘cure’ for deafness (i.e. cochlea implant or prevention via IVF). However, not everyone can have a CI fitted, not all deafness has genetic causes – so what about these people who can’t have a ‘cure’?

If we take the attitude that deafness is something that needs to be wiped out or cured rather I think we are sending the wrong message to society. That somehow in order to play a full part you have to be ‘normal’.

Quite often with small change in attitude many barriers that deafness presents can be broken down – i.e. someone taking the time to speak a bit more slowly or being prepared to write some things down.

I know at the end of the day we are heading in the direction of curing deafness and theres very little the Deaf community can do about it. If people make that choice for themselves or their children then fine – but they should be aware of the other side of the argument.

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