Transcript: BBC Radio Wales, Good Morning Wales

By Alison Bryan | April 11th, 2008 | Posted in Media Campaign |

BBC Radio Wales’ programme Good Morning Wales broadcast a debate on genetics on Wednesday 9th April 2008, at approxtimately 8:40am. Here’s a transcript, with thanks to Claire from TeamHado.

Rhun ap Iowerth – Now you might assume that if deaf people have children, they’d hope that their hearing would be normal. However, you might be wrong. There’s an intriguing debate going on at the moment over whether such parents should be able to choose if their child is deaf or not.

Bethan Rhys Roberts – well, a clause in the controversial Human Fertilisation and Embryology Bill going through Parliament at the moment would mean embryos used in IVF treatment would have to be screened out if the child would be born deaf. Some deaf people say that is wrong and that they should have the right to have a deaf child.

Rhun ap Iowerth – Dr Colin Gavaghan is the author of Defending the Genetic Supermarket, and a lecturer in Medical Law and Ethics. Good morning.

Dr Colin Gavaghan – Morning.

Rhun ap Iowerth – Dr Anna Middleton is with us in the studio. She works in the Genetics department at Cardiff University; both of you speaking at an even debating the issues tonight. Dr Middleton first of all, just tell us what’s possible at the moment in terms of the choices that parents could potentially have.

Dr Anna Middleton – Ok, so this legislation is surrounding the use of IVF and genetic testing. So if a couple have a strong family history of an inherited genetic condition, they could go for IVF, have their embryos tested and could have the embryos implanted that don’t have the serious genetic condition. And that’s been round for a little while and the reason this has caused controversy is this new layer of legislation is now looking to be passed, which says it applies to deafness. So if there’s a selection of embryos – some deaf, some hearing – then what the Government wants to do is make it law to only select the hearing embryos.

Rhun ap Iowerth – And in genetic terms, it would be very easy to identify which of those embryos would be a child that would have hearing problems, or whatever?

Dr Anna Middleton – Yeah. If the family history is strong and a known gene fault has been identified then yes, it is technically possible to do that.

Rhun ap Iowerth – Dr Gavaghan, an ethical minefield here. How on earth do you try to decide? On what grounds do they decide whether this should be available or possible under law, or not?

Dr Colin Gavaghan – It isn’t… It’s arguably an ethical minefield, but what occurs to me is that it may seem very obvious and very intuitive to you and I that given a choice, any family would want to have a child that could hear, rather than one that couldn’t, and it’d be a strange choice to choose the opposite. My position is that I don’t think it’s really the law’s proper business to interfere with decisions that strike us as a bit odd, or a bit unusual. The law’s legitimate role is to prevent us from making harmful decisions, or decisions that are going to impact badly on the future child. Now, it might seem obvious again to say that it’s a bad outcome for the child to be born deaf, until we consider what the alternative was for that child. There’s a big difference between making a baby deaf and making a deaf baby. For the child that is created or chosen in this case with deafness, the option of being hearing just wasn’t on the table. The only alternative was never to be born at all, and for the parents to have had a hearing sibling instead. Now, that being the case, I just can’t understand who this new law is intended to protect.

Rhun ap Iowerth – Do you have an idea, Dr Middleton?

Dr Anna Middleton – Well at the moment, cases are considered on a case-by-case basis and I feel there’s no need for the law to come into this. I don’t feel that the Government needs to have a say on this. These are very private and personal decisions, made by individual couples. No couple would undergo this process lightly – it’s very difficult, it’s very expensive, it’s hard to get, it’s emotionally very draining and you’d have to be very clear on what your outcome was going to be before you embarked on the journey.

Rhun ap Iowerth – For most people though, it would be hard to fathom why a parent would want this choice.

Dr Anna Middleton – Yeah, um, and there are… In the research that I have done, I have met many deaf people who perhaps have several generations of deafness in their family, they use sign language as their first language, they’re very positive and proud to be deaf and actually, they just don’t mind having deaf children. As far as actively using genetics to enable then to have deaf children, well very, very few people would be interested in that.

Rhun ap Iowerth – How unusual is this, Dr Gavaghan? Or are there other areas that could be affected by similar ethical questions?

Dr Colin Gavaghan – There are indeed. I mean, another clause within the new legislation, presuming it becomes law, would prevent parents making decisions on this basis on the grounds of sex, and there have been one or two cases where parents have specifically wanted to use this technology to ensure that their next child is either a boy or a girl. There was a couple in Scotland who already had 4 boys, their little girl died in an accident and they wanted to, as they saw it, restore the female dimension to their family. Now again, this is an area in which it could be argued that most of us might not empathise with that choice, they might not want to make the same choice, but we have to ask ourselves, does the Government have a legitimate reason to interfere with that choice? Would anyone be hurt if they actually made it? However odd we may find it, sometimes we might just have to accept that it’s not really our business.

Rhun ap Iowerth – Well, thank you both for talking to us this morning. That was Dr Colin Gavaghan, author of Defending the Genetic Supermarket. Dr Anna Middleton, thank you too – from the Genetics department of Cardiff University.