Many people have worried about what genetic engineering is going to do to child-bearing. Is it going to be possible to choose your children’s physical traits (height, eye color, etc.)? Is it going to be possible to design out undesirable traits (anything from Down’s Syndrome to cleft palate)? Is it going to be possible to design out traits that some considerable undesirable but others consider normal (homosexuality)? News from Britain via the Times of London offers yet another variation on this theme: what about people who want to design in disabilities:
DEAF parents should be allowed to screen their embryos so they can pick a deaf child over one that has all its senses intact, according to the chief executive of the Royal National Institute for Deaf and Hard of Hearing People (RNID).
Jackie Ballard, a former Liberal Democrat MP, says that although the vast majority of deaf parents would want a child who has normal hearing, a small minority of couples would prefer to create a child who is effectively disabled, to fit in better with the family lifestyle.
Ballard’s stance is likely to be welcomed by other deaf organisations, including the British Deaf Association (BDA), which is campaigning to amend government legislation to allow the creation of babies with disabilities.
A clause in the Human Tissue and Embryos Bill, which is passing through the House of Lords, would make it illegal for parents undergoing embryo screening to choose an embryo with an abnormality if healthy embryos exist.
Weird, isn’t it? The government wants to prevent people from deliberately saddling their children with disabilities, and others insist on the right to do so. Medical professionals aren’t thrilled with the latter’s efforts:
Doctors are opposed to creating deaf babies. Professor Gedis Grudzinskas, medical director of the Bridge Centre, a clinic in London that screens embyros, said: “This would be an abuse of medical technology. Deafness is not the normal state, it is a disability. To deliberately create a deaf embryo would be contrary to the ethos of our society.”
But deafness is now, to some, not just a physical disability but a “cultural” trait, and they want to be able to pass along their “culture” to their children:
Ballard, who previously ran into controversy as director-general of the Royal Society for the Prevention of Cruelty to Animals (RSPCA) where she pushed through extensive job cuts, said in an interview with The Sunday Times: “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.”
Ballard added: “We would like to retain, as far as possible, parental choice, but it has to be in conjunction with a clinician so that people know exactly what they are choosing.”
Ah, choice: the ultimate trump card of our age. I wonder how the Labor-dominated Parliament is going to stand up against that argument.
Francis Murphy, chairman of the BDA, said: “If choice of embryos for implantation is to be given to citizens in general, and if hearing and other people are allowed to choose embryos that will be ‘like them’, sharing the same characteristics, language and culture, then we believe that deaf people should have the same right.”
How deaf people view themselves and their community is up to them. They should leave future children alone, however. Children aren’t a commodity to be manufactured, and these folks have no more right to decide that their children will be deliberately bereft of hearing than they have a right to decide they will be born blind or without legs or with one kidney or with hemophilia.
December 27, 2007 at 7:03 pm
The Sunday Times has taken this completely out of context. We are NOT about genetic manipulation, and its about the media wanting to paint deaf people in a particular light. If you check out our website, you will this campaign is about, including my e mails to the Sunday Times.
Parliament is trying to pass a clause that screens out embryos (via IVF) on the sole basis of abnormality, which includes deafness. The embryo is *already* deaf, etc, but parliament is seeks a one way nature of selection. E.g. 9 deaf embryos, 1 hearing embryo, the hearing embryo must be picked. We oppose to this discrimination, and is a statement by parliament who is permitted to survive and who is not. That is a form of eugenics.
Incidentally, this is already allowed in the UK, by virtue of a statement by the Human Fertilisation and Embryology Authority: screening out of deafness. Deaf = no right to life?
Furthermore, those who carry deaf genes are not permitted to become egg or sperm donors. The same if you have severe refractive errors, i.e. long or short sighted and in need of glasses. Through this parliament is making a statement who is permitted to reproduce and who is not.
The Sunday Times article was probably written entirely out of context because of attitudes that exist towards deaf people (we are inferior), and secondly we live in a medical society where the perfect human being is strived for.
On a *personal* note, I’m against selection in any form.
December 27, 2007 at 7:37 pm
Thanks for coming by, Alison. I’m against all selection as well, including any that the British Parliament might mandate, especially selection that declares that disabilities are cause for abortion or discarding of embryos. While I wouldn’t want deaf people deliberately creating deaf children, I wholeheartedly agree that deafness is absolutely no disqualifier for life.
December 28, 2007 at 9:23 am
Gosh, a newspaper taking things out of context? What next?
January 9, 2008 at 6:56 pm
[...] THE WORLD of Designer Babies …. [...]
January 22, 2008 at 5:43 am
I understand thsi section but what I don’t understand is why you would purposely burden your child with a disability, they may fit in with the family and lifestyle but what about the outside world; schools, jobs etc Why leave your child at a disadvantage in the world.
May 27, 2008 at 8:01 pm
Parents have no right to disable their child. It is good to deal with a disability that you might have with a postive outlook, but you are lying to yourself if you think that it would benefit the child in any way. Try explaining to a child that he or she is only deaf because you, as a parent, choose them to be. Disabilities are not to be celebrated, but embraced and cured in the future.