Helen draws attention to an ethical issue that's been in the news this week, and says she'd be interested in my perspective on it. Well, here goes!
To quote Helen:
The story is of a deaf couple who if they opt to have a child by IVF will
be forced to have a child that is hearing if the selection of embryos on offer
has one that is hearing. They say they would rather have a deaf child.
Julian Savulescu, director of the Oxford Centre of Applied Ethics
says: "Given that we are looking at such at a very small number of people, I think
we can afford to be quite liberal about this. Deafness is a disability, but it
is not one that stops people having a life that's worth living - and if there
are a handful of people out there who want a deaf child, they can find a doctor
who will help them, and they are prepared to pay for it, then so be it."
Hmm, I'm not sure I agree.
I don't claim to have any particularly distinctive knowledge on any of these topics, but here are some quick thoughts anyway (Another disclaimer: I have no idea what the politically correct language is with respect to these issues, so I apologise for any subsequent faux pas. If you alert me, I'll change things.)
The new legislation is going to force people to make certain choices (or, more accurately, to refrain from certain choices) - namely, they won't be allowed to select embryos that are known to possess genetic deficiencies. So the key question is: why would we want to restrict peoples' choices in this way, and are these good reasons?
Imagine that a couple are choosing between two embryos: one with an abnormality (say deafness, for argument) and one healthy embryo. What justification could there be for forcing the couple to choose the healthy embryo?
(1) Perhaps you could argue that the healthy embryo will be more likely to live a fulfilling life; but that's not obviously true. I'm sure that disability advocates will argue against this and suggest that their lives can be (and are) just as fulfilling as the average healthy person. For particularly serious disabilities, I'm not sure the 'equal fulfilment' response will look so plausible - but for cases like deafness, where sufferers can lead (relatively) normal lives, and partipate in nearly all of the activities and institutions that 'ordinary' people can.
(2) Or, instead, you could argue that the healthy embryo is more likely to contribute more to society - perhaps in terms of productivity - or, at least, that they will be less of a burden on society in terms of the state support needed for the family. But this is a tricky line to take; doesn't this argument support all kinds of genetic discrimination, not just based on disabilities? Any kind of deficiency - or even imperfection - might be subject to this argument. And then this begins to look like eugenics all over again. So it doesn't look like any argument from the 'societal cost/benefit analysis' will be feasible.
Perhaps there are other routes to take - I know this analysis is incomplete - those are just two possibilities that spring to mind. Neither of them seem convincing to me; and yet I do feel that there's a problem here, especially when it's stated in bald terms: "how would the child react when they found out that their parents actively sought to deprive them of a sense?" (from the BBC discussion site).
Things are further complicated, however, when you consider that some reject the idea that disabilities are 'deficiencies' at all. One of my lecturers has a paper on this sort of thing - you can read it here. She argues that being disabled is just a way of being a minority.
Relatedly, last night's Moral Maze was about issues related to this problem, so those interested should definitely check it out: http://www.bbc.co.uk/radio4/religion/moralmaze.shtml. As ever with the Moral Maze, be prepared to shout at your radio when the sillies come on and say silly things.
3 comments:
Despite the issue of whether or not we should be playing God with embryos (or at what point do we start playing God); I think an area of concern of mine is parents choosing embryos based on their own personal preferences and not what is in the best interest of the ‘child to be’.
A case could be made that just because the technology is there does not mean it should be used to its full extent. Perhaps a ‘list,’ for a lack of a better term, of disabilities that would not cause serious impairment to the quality of life should be made, and if the disability is on the ‘list’ then the implantation should be allowed with (and not to the exclusion of) normal embryos (to allow probability and fate to take it course): random selection of the approved embryos (including both normal and disability) could be used to decide which embryos are actually to be implanted. The question then becomes how to create such a list including realizing the quality of life of a child is partially based of the financial wealth of the child’s parent.
Still another concern of mind with these screening practices (regardless if the aim is to assure or eliminate a genetic characteristic) is what occurs if a child, by perhaps a some small chance, does not turn out how the parents desire. Will the parents be allowed to put the child up for an adoption; do the parents’ financial obligations end with the adoption, etc.?
Another issue is if people are able creating children without genetic imperfections is the environmental variable (i.e., nature vs. nurture) enough to make things fair for those born without genetic screening: granted screening is one thing and creating imperfection (or genetic superiority) is another.
Selective IVF means doing testing on embryos and discarding those that do not have a certain characteristic. In my view, this is killing human life, and completely morally unacceptable.
The problem with discrimination is that one specific characteristic of an individual (e.g. sex, skin colour, disability) is counted as more significant than the whole person. So, for example, a definition of racism could be judging someone based on the colour of their skin alone, and not on the content of their character.
The exact same error is made when the worth of a person is judged based on whether or not they can hear or see, rather than their status as a human being.
In order to select deaf embryos, it would be necessary to kill hearing embryos, and decide that they are unworthy of life, simply because they have one undesired characteristic - rather than treating them as full human beings.
This is an interesting book.
firstly- having had a crash course in disability terminology since being disabled students rep at Uni, well done! only one thing I'd change and that's 'ordinary' for 'non-disabled'.
Secondly, one thing that struck me reading this was, if had hearing baby, I don't understand why it couldn't take full part in the culture they are discussing. It's not as if hearing people can't sign! being able to hear shouldn't limit it's acceptance in those circles as long as it learns to sign and takes part in all the activities with everyone else. I would worry about it's speech development though...
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