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.]
“that panic is evidence that at least some legislators do regard deafness as making life close to not-worth-living”
What makes you think that? Surely it merely shows that they regard deafness as a disability. One could reasonably hold that people ought not to have a disabled child when they can have a more able one instead, without thereby thinking that the disabled life is not worth living. (It’s just that the able life is even more worth living.) Replace ‘deaf’ with ‘blind or mentally retarded’ and this view may seem more intuitive.
Though it’s another question entirely whether the State ought to be enforcing this moral obligation…
One thing I found troubling was the quote from the couple distinguishing deafness from blindness. It seemed like a rather disturbing ranking to be engaged in, and I wondered if blind people would agree with the ranking. I suspect not, though I guess there’s more of a sense of distinct culture with deafness due to a distinct language?
[...] Minister Gordon Brown’s grilling by senior MPs on the Commons liaison committee. (75 clicks) Reproductive rights, d/Deafness and the social model of disabilityNote: This is actually written by … Apostasy from Islam and the Prophet’s decree against it.Assalamualaikum warahmatullahi wabarakatuh. [...]
[...] Minister Gordon Brown’s grilling by senior MPs on the Commons liaison committee. (75 clicks) Reproductive rights, d/Deafness and the social model of disabilityNote: This is actually written by … A major in midwifery, a minor in rewilding….So lately I’ve toyed with the idea of leaving school [...]
Richard, let me note that the idea that a hearing life is more worth living than a deaf one is something that many people would reject, including the advocates to the deaf mentioned in the post.
I find this a little confusing.
> We don’t view being deaf along the same lines as being blind
There is a hypothetical situation where people intentionally create disabled children who have very short life expectancy, effectively for the purpose of body part donation. or where a scientist might use his knowledge to ‘get revenge’ on a family or a group of people.
I guess the question is if there was not such a law could someone do the above legally? They are the sorts of things that seem a bit odd but may become more of an issue in time.
BTW the first part of that post is independant from the second - I’m just surprised that thy might give the impression they think blind people might consider their lives not worth living but deaf people would not. I can imagine the mental retarded argument possibly based on ‘not being entirely there’ although one might still have to be pretty careful playing around with that in the context of law.
[...] Reproductive rights, d/Deafness and the social model of disability [...]
Richard,
You say, “Though it’s another question entirely whether the State ought to be enforcing this moral obligation…”
That’s my point – I don’t think that the moral obligation you outline (which I totally reject, by the way) would be enough to explain the inclusion of deafness in the context of this Bill. One possible explanation for how it might have come about is that the legislators involved think deafness is so awful that it’s overwhelmingly important to prevent the creation of deaf babies.
Incidentally, I also think it’s meaningless to say one person is globally ‘more able’ or ‘less able’ than any other. (At most, you can sometimes say that with respect to a particular skill or capacity - x can run faster than y, y can shout louder than x – but that wouldn’t generate any overall conclusions about which lives were “more worth living”.)
Roughly speaking, I take ‘x is disabled’ to be a claim about x’s relationship with the social, political and physical environment, so knowing something about the genetic likelihood of a particular condition doesn’t settle whether that condition will be disabling in the society into which the child is born.