11 Screening and embryo selection: eliminating
Christy Nolan was deprived of oxygen at birth and suffered from cerebral palsy. Nolancouldn’t walk, talk or use his hands. He spent his short life (he died aged 43 in 2008)in a wheelchair.
Until Nolan was 11 he couldn’t communicate with words at all. Then a new drug
Lioresal made it possible for him to use a ‘unicorn stick’ on a headband.
In 1987, with the help of his mother Bernadette, Nolan published his autobiog-
raphy entitled Under The Eye of the Clock. Nolan’s mother held his head whilst hepicked out the letters he wanted. He managed a couple of pages a day.
The book won the Whitbread Award and was described as ‘astonishing’ for its
extraordinary use of language, comparable, it was said, to Yeats and Joyce.
Here is Nolan’s description of the process of writing:
‘My mind is just like a spin-dryer at full speed; my thoughts fly around my skull while millionsof beautiful words cascade into my lap. Images gunfire across my consciousness. Try then togive expression to that avalanche in efforts of one great nod after another.’
Box 11.13 Case study: ‘Of course a deaf couple want a deaf child’
Adapted from the article by Dominic Lawson The Independent Tuesday 11 March2008. http://www.independent.co.uk/opinion/commentators/dominic-lawson/dominic-lawson-of-course-a-deaf-couple-want-a-deaf-child-794001.html.
Few broadcasters convey outrage as skillfully as the BBC’s John Humphrys. Yesterdayit was not a politician who got Humphrys to hit his top note. It was a bloke calledTomato – Mr Tomato Lichy, to be precise. The programme’s listeners never heardMr Lichy speak: he answered Humphrys’ questions in sign language, and someonetranslated his answers into spoken English for our benefit.
Tomato Lichy and his partner Paula are both deaf, as is their child Molly. Paula is in
her 40s and the couple believe they might require IVF treatment to produce a secondchild. They very much want this child to be deaf and are prepared to undergo IVF toachieve this.
Here’s where it gets political: the Government is whipping through a new
Human Fertilisation and Embryology Bill. Clause 14/4/9 states that, ‘Persons orembryos that are known to have a gene, chromosome or mitochondrion abnormal-ity involving a significant risk that a person with the abnormality will have ordevelop a serious physical or mental disability, a serious illness or any other seriousmedical condition must not be preferred to those that are not known to have suchan abnormality.’
This, Tomato Lichy signed to Mr Humphrys, means that he and Paula would be legally
obliged to discard the very embryos they wished to implant: ‘I couldn’t participate in anyprocedure which forced me to reject a deaf embryo in favour of a hearing embryo.’Mr. Lichy argued this legislation was discrimination against deafness. He’s quite right.
The explanatory notes to the clause inform legislators: ‘Outside the UK, the positive
selection of deaf donors in order deliberately to result in a deaf child has been reported. This provision would prevent (embryo) selection for a similar purpose.’
This stems from a case in the US when a lesbian couple, Sharon Duchesneau and
Candace McCullough, both deaf, selected a sperm donor for his family history of deafness.
In an email interview in the Lancet Duchesneau and McCullough wrote: ‘Most of
the ethical issues that have been raised in regard to our story centre on the idea thatbeing deaf is a negative thing. From there, people surmise that it is unethical to wantto create deaf children, who are, in their view, disabled.
‘Our view is that being deaf is a positive thing, with many wonderful aspects. We don’t
view being deaf along the same lines as being blind or mentally retarded; we see it as morelike Jewish or black.’
This is a clear exposition of the concept of ‘cultural deafness’. Adherents of this
philosophy believe themselves to be members of a ‘linguistic community’. Mr. Lichysaid he felt ‘sorry for’ John Humphrys for not being able to appreciate ‘deaf plays’. Theproponents of cultural deafness, in virtue of their separate language, describe them-selves as an ethnic minority. This makes any legislative attempt to weed them out asembryos analogous with the most insidious racism.
In the most obvious sense, the argument that deafness is not a disability is self-
evidently wrong. The absence of one of our most valuable senses brings with it manypractical disadvantages. A deaf boy might have fantasies about being a soldier or afireman, but fantasies are what they will remain. Humphrys tasked Tomato Lichy withthe fact he would never be able to enjoy the music of Beethoven – a low blow asBeethoven himself was tormented by increasing deafness.
But if you have never been able to hear music, then you cannot be said to miss it.
I know one or two people, completely tone deaf, who are not in the least miserableabout it: their only irritation lies in having to hear ‘noise’ rather than silence. The ideathat congenitally deaf people are ‘suffering’ strikes me as mere presumption.
It is not as if the implantation of an embryo thought likely to be deaf is equivalent
to deliberate mutilation. The choice isn’t whether that embryo could be ‘made deaf ’or not. The choice is whether to discard an already existing embryo for another onebelieved to be less at risk of turning out to be deaf.
The real issue here is whether the state should be able to dictate to the Lichys which
of their embryos to select, and which they should be compelled to reject. I am notsurprised he can’t understand why he and his partner should be legally preventedfrom choosing the embryo which might most turn out to resemble them.
John Humphrys argued that most people would regard his demands as profoundly
selfish: Mr. Lichy and his partner might want a deaf child, but what about the views of thechild itself? I suspect that the child in question would be intelligent enough to be able tounderstand that the only alternative deal for him or her was never to have existed at all.
Jamie Whitaker was born in 2003 so that he could save the life of Charlie, his olderbrother.34
Charlie has Diamond–Blackfan anaemia (DBA), a rare genetic condition treatable
only by a stem cell transplant from a matching donor.
The boys’ parents, Michelle and Jayson Whitaker, selected the embryo that became
Jamie, after IVF undertaken solely in the hope of producing a genetic match forCharlie.
The Whitakers had to travel to the United States for treatment because the Human
Embryo and Fertilisation Authority in the UK refused to grant the Whitakers’application because there would be no direct benefit to the unborn child.35
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