The Royal National Institute for Deaf and Hard of Hearing People has weighed in on the controversy over the selection of deaf children for adopting deaf couples. The Institute supports the practice. However, there remains a greater debate over the decision of American parents to engineer a deaf child through artificial selection.
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.
The American couple created a baby with hearing disabilities by selecting a donor with generations of deafness in his family. It is only the latest in the debate over “designer babies.”
British advocates for the deaf would like the same ability to engineer such babies.
Francis Murphy, a leading advocate 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.”
It is a fascinating debate since biogenetic science has always strived to reduce disabilities, but would now be used to perpetuate such a disability. Of course, the issue of adopting a deaf baby is entirely understandable. The question of engineering a disability, however, relates to the right of the baby, if any, to be free of avoidable disabilities. Obviously, the baby cannot be heard in the debate over the intentional imposition of a disability. That creates a question of whether the state or court should be heard on the question through a guardian or other independent advocate. What makes this particularly difficult is that parents can natually engineer such disabilities in the selection of partners — or at least increase the likelihood of such a disability.
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If parents can rightly demand a scientific guarantee that they will have children like themselves in some important way, then I suppose we will soon see parents demanding a scientific guarantee that all their children will have exactly the same level of intelligence as the parents: no less intelligence and (especially) no more intelligence.
This “designer baby” issue is quite interesting. We are all now designed by chance with all the attendant problems associated with that phenomena. Assuming the technology exists, maybe we should have the right to recognize and design out serious genetic disorders like Downs Syndrome or Tay-Sachs. Why consign a person to a genetic disorder if its preventable? The question here though is should it work in reverse to insure a disability to match the parents lifestyle? Should society have to pay benefits to the child for disability and thus subsidize the parents choice? Can the child sue the geneticist or physician upon reaching the age of majority for intentional maiming? I shall have to think about this issue much more.
You are definitely talking to the wrong person.
I don’t believe embryos are people – only potential people ie nothing more than a mass of cells up until “the quickening” (St Thomas Aquinas) estimated at sixteen weeks of gestation.
I also don’t believe in stacking the odds against having the best possible life – from the beginning. I consider it selfish.
This is NOT about genetic manipulation. The embryo is ALREADY deaf. Parliament is just making a statement that embryo is not allowed to live.
Deaf = no right to life.
Reminds you of what happened in Nazi Germany?
For the record, I don’t personally advocate selection, but am being forced to respond to measures were a government is making a statement that certain classes of embryo don’t have a right to survive.
We are just responding to deaf embryos should not be destroyed on the basis they are deaf. End of. If you think that deaf embryos should be killed off on the basis they are ALREADY deaf, then why not say lets kill an embryo because it needs to wear glasses.
For the record, those with refractive errors aren’t allowed to become egg or sperm donors. If you wear glasses you have an abnormality. Do you agree with that or not?
People need to wake up to the extent of this clause instead of using it as an excuse to have a go at what they THINK deaf people stand for.
P.S. The Sunday Times got it completely wrong, just an excuse to exercise out their media misconceptions again, which gets into disability hate crime (a criminal offence). See my e mails on the Stop Eugenics site for more information.
Patty
1. Yes it is OK to be Deaf.
2. The article you [and the poster in this blog] are responding to, has got the whole issue wrong. It is not about designer babies. Read the info posted at http://www.stopeuegnics site.
3. Like I said, the view of deafness as a disability is relative. Hearing people think of it as a disability, whereas many Deaf don’t. Why? Cos we live it and hearing people don’t.
4. To ansa your question: “Never having heard…..” Never having being deaf can you choose not to be Deaf? Why? It comes down to a value judgement.
5. And RC, it is about the relative merit about being Deaf vs being hearing. Otherwise this would be a non-issue. Giving it a wider remit, all sorts of traits homosexuality, gender, colour, size, and so on…… are all open to this screening. All traits are subject to value judgements based on culture etc… so again, you cannot argue the issue of genetic manipulation with out debating the issue of value judgements.
I agree with you, absolutely, RC! My limited argument, here, can be spread across the board elsewhere!
Tony/Patty C
I’m not so sure it’s productive to make this a discussion or debate on the relative merits of hearing or of being deaf. I believe there’s a much larger issue of having genetically engineered people being born and the extent of further selectivity of traits people might include or exclude for births.
First of all, you don’t get to be right by making me wrong.
Secondly, it is very difficult to simultaneously act tough while displaying vulnerability.
Thirdly, and mostly importantly, you will not win the argument that being deaf is better than having hearing. So forget it.
The conversation you should consider having is that it is “OK” to be deaf. Begin from a point of a desire for understanding.
And I will pose the ultimate Ethics question again. What to do with the genetically engineered mishap of a hearing offspring under your proposed scenario?
Would you give the baby up for adoption. Or might you purposely induce an otitis media cocktail into the ear canal-under strict lab conditions, of course. Or perhaps you could rationalize ignoring the obvious needs of hearing child because simply because it’s not convenient to your established lifestyle.
How would you handle it?
Patty C
On what basis do you make your assumptions? Your experience? What society has told you? Your parents?
In all case sit comes down to value judgements… and which value judgements are the right ones, correct ones, productive ones, appropriate ones?
No parent can surmise that any child of theirs will grow up according to the choices they made of their child. Let alone happy with the choices that parents make for their kids. So really, that point is a non issue.
Deafness is a disability to those who hear. Like many other traits, its value is relative… and the way the hearing world harps on about how wonderful it is to hear, and painting deafness as a delibilitating condition, is it any wonder that so many Deaf and hearing impaired people are damaged in the process.
You doubt the choice, because you don;t know or understand the choice. Any kid is not given a choice into the circumstances they are born, so this notion of choice between two traits is a furphy.
You ‘hear’ what you want to ‘hear’, I guess.
Having never heard can you honestly say you would chose not to have hearing?
You can’t miss what you’ve never had, but you also cannot, rationally,
surmise that your genetically engineered child might not have a different view having been given the choice of being born with or without a hearing disability.
Being deaf, a disabilty, is not to say it is not possible to live a productive life.
Given the choice, is there a hearing impaired person, anywhere, who would honestly choose to be deaf? I sincerely doubt it.
And a link to my post about this article:
http://alltheyoungdudes.radio666fm.com/2007/12/23/media-watch-hearing-people-still-dont-get-it/
As a Deaf person myself, I am in a better position to comment about the normality of being Deaf. That Sunday times article in question is a load of crap, to which uninformed people are responding to with yet more crap.
I’ve just had my Christmas spoilt having to read ignorant, uninformed and unmitigated prejudicial responses – too numerous to mention.
But do yourselves a favour, go and read about Deafness from a Deaf person’s point of view [and not the toss you get handed down by the media, the medical profession and other uninformed sources].
At the very least, go to this site: http://www.stopeugenics.org and find out what it’s really about!
The fifth paragraph of the piece begins:
Francis Murphy, a leading advocate said: “If choice of embryos for implantation is to be given to citizens in general….
Is this actually a choice “…to be given…”? By whom? When? Has this “choice” been given already? This seems wrong on many levels.
I cannot imagine any Medical Ethics Committee worth it’s salt participating in support of the genetically engineered disability for any reason – much less for comfort and/or convenience.
And I suppose you are correct that it’s possible that prospective parents may try to tip the genetic odds by their coupling, but there are certainly no guarantees there either.
The obvious question then becomes if they disappointedly produce a normal, hearing offspring what’s the proposed ethical and legal
remedy, then?