Note: This is actually written by Heg.
Next month the UK Parliament will be debating the Human Fertilisation and Embryology Bill. Clause 14 (4) (9) would make the selection of certain embryos for implantation illegal:
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 serious physical or mental disability, a serious illness or any other serious medical condition must not be preferred to those that are not known to have such an abnormality.
Dominic Lawson in The Independent offers some background:
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 all stems from a single case in the US six years ago, when a lesbian couple, Sharon Duchesneau and Candace McCullough, both of whom were deaf, selected a sperm donor on the basis of his family history of deafness. It caused outrage – outrage which clearly filtered through to the British Health ministry.
The most revealing account of this most unusual conception appeared 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 that being deaf is a negative thing. From there, people surmise that it is unethical to want to create deaf children, who are, in their view, disabled.
“Our view, on the other hand, 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 paralleling being Jewish or black. We don’t see members of those minority groups wanting to eliminate themselves.”
In support of the Bill, Daniel Finkelstein in The Times argues that creating a deaf child is criminal (he throws in a quick yet wholesale rejection of the social model of disability at the same time). Crudely put, I think he thinks that making a deaf child is like making a child deaf.
But is anyone harmed when a couple have a number of viable embryos and choose to implant one with a high likelihood of being deaf? And would the answer to that question settle whether the State should intervene in the couple’s choice?
This debate is full of meaty thought experiments for philosophers to get their teeth into: but it’s worth noting that the scenario, as far as we know now, is vanishingly unlikely. In my view, the Bill is a product of ill-informed panic, and that panic is evidence that at least some legislators do regard deafness as making life close to not-worth-living AND that they believe the State has an interest in deciding that some lives should not be brought into being. It’s worth noting that none of the consultation on the Bill was conducted in British Sign Language, which means that members of the Deaf community had to engage in their second language.
[A bit of background – for an explanation of the social model of disability, I particularly like the one offered by the British Film Institute (odd source, perhaps, but it’s really good). And on the terminology of d/Deafness: roughly, the capital D is to indicate a cultural and linguistic identity, while the small d indicates possession of a physical attribute.]