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Life, Death and IVF

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The Goldfish | 13:59 UK time, Friday, 14 March 2008

I wasn't going to write about this, but then I read one too many news stories and lost my temper.

Controversy has erupted over... well look, the thing that controversy has erupted over is quite different from the story that all the papers are running, which is about a deaf couple who want the opportunity to choose a deaf child through IVF. In fact, what this couple seem to have been trying to do is simply object to the Human Embryology and Fertility Bill which makes it illegal to implant a "deaf" embryo when a "hearing" one is available. Ouch has a transcript of the Today Programme interview with deaf activist Tomato Lichy (what a name!) who, together with his partner, have raised this issue.

Of course, rather than focusing on the law and its implications, the news stories are all about this couple, with headlines such as Choosing a deaf baby is criminal (of course, this will soon be literally true) or the catchy Creating a deaf child is immoral and no parent should be allowed to choose this for their child.

Most often, debates around reproductive technology are concerned with limiting the power of prospective parents to discriminate between different sorts of children they may or may not want to have. For example, the same bill enshrines the ban on selecting embryos of a particular sex for non-medical reasons. However, this part of the bill is actually enforcing discrimination. When someone has a natural pregnancy, they can choose whether or not to have the available scans and, if the results show something up, they can choose how to proceed. But if a couple who were likely to have a deaf child naturally had to go through IVF, the law now dictates that their child will be hearing.

I have been slightly irritated by the suggestion that deaf children are being destroyed by this; lots and lots of potential people are created and discarded and most cycles of IVF fail in any case. However, the greatest mistake that I keep seeing and hearing on this matter is the idea that choosing an embryo with genetic deafness (or any other genetic impairment) is inflicting something onto the unborn child.

The only thing that can currently be inflicted upon any embryo is life. Life with whatever combination of genes that particular embryo happens to have.

In reality, this law is only likely to effect a very small number of people. Very few people would share the desires of Mr Lichy and his partner, who are not even undergoing IVF at this time. However, there's no way that we can interpret such laws as implying anything else but that life with an impairment is less valuable than one without. What's more, this law supports the dangerous myth that disability is something that can be tackled with reproductive technology. This myth not only hinders our progress towards equality, but misleads well-intentioned prospective parents.

For a start, very few of disabled people have any kind of genetic "defect" which can currently be screened out at embryo stage. All but a handful of pregnancies are conceived through the icky sticky method anyway, far from the dignity and precision of a laboratory. A handful of impairments can then be looked for during pregnancy, but the vast majority of congenital impairments are not evident until after birth, and possibly not for months or years to come. What's more, the vast majority of disabled people were not born with our impairments at all. The world is a dangerous place and the human condition is frailty.

In other words, all the available technologies, including the ordeal of late termination, only reduce one's chances of having a disabled child by a tiny fraction. We need to see disability as an issue that can be addressed by social change, not as a problem that can ever be eliminated with reproductive technology.

I wrote two longer blog-posts about reproductive technology and disability a while back over at my own blog here and here in case anyone's interested.

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