Spreading Sickness
By Dave Hitt on Jan 7, 2008 in Politics
Some British deaf groups are demanding the “right” to create deaf embryos.
Ballard, …said: “Most parents would choose to have a hearing embryo, but for those few parents who do not, we think they should be allowed to exercise that choice and we would support them in that decision.
“There are a number of deaf forums where there are discussions about this. There are a small minority of activists who say that there is a cultural identity in being born deaf and that we should not destroy that cultural identity by preventing children from being born deaf.â€
Words don’t fail me very often, but I’m finding it difficult to come up with a pithy comment on just how creepy and disgusting this is.
Actually Dave it’s not quite as creepy as it sounds in the article (shock horror the journo hasn’t grapsed the situation properly). I happen to be fairly familiar with this topic as it I have been following it as part of my work in the health ethics area.
In short the legislation as it is currently drafted for the UK says that in IVF cases where there are multiple embryos suitable for implanting the healthy embryos will be chosen for implantation over the unhealthy embryos. Generally no one argues with that in theory.
In practice however the legislation is flawed (another shock I know). In this case because in the proposed legilsation deafness is classed as unhealthy and therefore embryos which have it would not be able to be implanted.
People aren’t really begging for the right to select deaf embryos over hearing ones just so they can have a deaf child but they are arguing that deafness should not automatically result in an unhealthy classifcation for an embryo. One of the reasons for this is that once deafness is considered unhealthy then it is predictable that no deaf embryos will be allowed to be implanted – possibly even in instances where all the embryos are deaf. Some deaf people (not all of them to be sure) are making the argument that deafness should not automatically prevent an embryo being implanted. Especially as the same thing would occur quite naturally in the general population (i.e. certain kinds of deafness are 100% guaranteed to be passed on to the children and people who have those kinds of deafness are perfectly able to produce children naturally and those children will be known to be deaf at the time they are conceived).
This is all part of a much bigger ethical debate about genetics and all the things that we’re on the cusp of developing with respect to reproductive technologies.
I haven’t decided which side of the debate I agree with really as I can see both sides of the argument and feel there are lots of questions that remain unanswered. What does define “unhealthy”? There’s not much debate about the extremes of severe mental or physical disablity but things get interesting when you look at the less extreme ‘conditions’ such as deafness, blindness, dwarfism, susceptibility to psychological conditions such as depresseion etc. Where do we draw the line? If we draw the line when considering IVF cases should we draw the same line when it comes to natural pregnancies? If the capacity exisits for some kind of selection at the embryo stage would a person that was born with one of these conditions have the right to sue their parents for allowing them to be born ‘unhealthy’?
These and other questions will be tackled in the coming years I guess. Hopefully not by governments!
Bernadette in Australia | Jan 7, 2008 | Reply