Wednesday, October 15, 2008

Wanting a Deaf Child

We have discussed the issue of a deaf couple wanting to use embryo selection to choose a deaf child before, and now the issue is again being discussed in connection with the UK’s hopeless mess of a bill that seeks to regulate all human reproduction. The issue is important on several levels and I think worth revisiting. From the story:

'Like any other three-year-old child, Molly has brought joy to her parents. Bright-eyed and cheerful, Molly is also deaf - and that is an issue which vexes her parents, though not for the obvious reasons. Paula Garfield, a theatre director, and her partner, Tomato Lichy, an artist and designer, are also deaf and had hoped to have a child who could not hear.
‘We celebrated when we found out about Molly’s deafness,’ says Lichy. ‘Being deaf is not about being disabled, or medically incomplete–it’s about being part of a linguistic minority. We’re proud, not of the medical aspect of deafness, but of the language we use and the community we live in.'

Now the couple are hoping to have a second child, one they also wish to be deaf –and that desire has brought them into a sharp confrontation with Parliament. The government’s Human Fertilisation and Embryology (HFE) bill, scheduled to go through the Commons this spring, will block any attempt by couples like Garfield and Lichy to use modern medical techniques to ensure their children are deaf.

And here is the crux of the issue:

‘Paula is now in her early 40s,’ says Lichy. ‘Our first daughter was born naturally, but due to Paula’s age, we may need IVF for the second.’ The trouble is that, according to clause 14/4/9 of the bill, the selection of a hearing child through IVF is permitted, but embryos found to have deafness genes will be automatically discarded. ‘This sends out a clear and direct message that the government thinks deaf people are better off not being born,’ says Steve Emery, a sign-language expert at Heriot-Watt University.

This point is backed by Lichy. ‘It is a cornerstone of modern society and law that deaf and hearing people have equal rights. If hearing people were to have the right to throw away a deaf embryo, then we as deaf people should also have the right to throw away a hearing embryo.’

Her logic is impeccable. The evil act is automatically discarding certain categories of embryos because they aren’t deemed good enough. This is eugenics, pure and simple, and it is evil in that, as the woman said, it presumes some lives have greater value than others. And in an age of radical individualism, if eugenics is good from one angle it is just as good from another.

Read it all here.

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