Friday, January 05, 2007

"Designer Deaf" babies?

An ethical minefield: Some ponder ‘designer' babies with Mom or Dad's defective genes
By Lindsey Tanner

CHICAGO - The power to create "perfect" designer babies looms over the world of prenatal testing.

But what if doctors started doing the opposite?

Creating made-to-order babies with genetic defects would seem to be an ethical minefield, but to some parents with disabilities - say, deafness or dwarfism - it just means making babies like them.

(The rest of the article can be read here.)

I understand that this is going to seem completely and totally incomprehensible to people who don't understand at gut level that there are Deaf (and, apparently, dwarf) people who do not consider themselves broken in any way.

To them, their condition is simply a different physicality, just as difference in skin colour is.

But if you knew how many Deaf people I've either read about or who have said to me personally or via email or forum that if they had a child they would want it to be deaf, you'd probably be surprised.

Would they make the child deaf? I've only heard one person say they would do that if they could, and that was in the highly emotional documentary The Sound and the Fury, required viewing for anyone who wants to understand Deaf culture and cochlear implants' controversial relationship to Deaf culture.

And are these people making their children disabled? Arguably not - they are just choosing to keep existing embryos to develop into children who share their physical characteristics, be it deafness or dwarfism.

In other words, it's too complex for me to sort out. I can't condemn it outright, I've gained too much understanding of disabled culture to do that. I can't condone it - I know what losing hearing took from me, and what regaining it gave me. How could I advocate denying hearing to a child? How can I condemn a child being chosen to have a Deaf life from birth when I don't know how that compares to going deaf?

But sometimes I think we're not nearly smart enough for the technology we've developed, I'll tell you what.




Blogger BrianFies said...

Gee, no comments. Your readers must all be pretty smart, not wanting to stroll into a minefield and all.

It's complex and controversial, and nothing I've ever had to think too hard about in my life. Nevertheless, with some trepedation, I'll say that my first thought was as a parent myself I'd want to do all I could to give my children every advantage possible and would never deliberately do anything to limit their possibilities in life. Anything less strikes me as insecurity and narcissism.

Stipulating that hearing-impaired people, little people, etc. are capable of more than most people realize, there are still things they just can't do, careers they just can't pursue, choices they just can't make. Let's say five percent: Five percent of the world's activities, jobs, life choices are simply realistically not available to them. Y'know what? I want my children to have a fair shot at that five percent. I don't want my kids to simply turn out like me (although that'd be a fair enough outcome); I want them to be better, stronger, happier, healthier, more confident, more accomplished. If I could give them superpowers I would.

I pressure or anything.... We haven't screwed up our kids too bad, I promise.

Next you'll ask me if I'd screen fetuses to eliminate imperfections, or if I'd genetically manipulate embryos to make my children better/faster/stronger. There's an obvious slippery slope there. Not gonna answer, and luckily they're not decisions I'll ever face. The romantic in me would prefer to leave babymaking to random chance. But when the day comes that a young couple can pay a few hundred dollars to increase their odds of having a healthy baby with an IQ over 100, I don't know how loudly I'd object.

3:21 p.m.  
Blogger ronnie said...

Trust the guy who took on cancer to be the one brave enough to wade in on this issue.

I think your take is remarkably compassionate given that most non-disabled people's reactions would be immediate revulsion and condemnation.

Having taken a few days to chew the concept over, I find myself in complete agreement with your position: while I sympathize with these people, I, too, would give my child every advantage, perhaps more importantly, every option.

The Deaf can deny that hearing is a true "advantage", just as dwarves can deny that average adult height is a true "advantage", but they are arguments from the heart, not the head. And however you slice the bread, they are removing options.

Just as I would work my ass off to ensure a college education for my child if I had not had one myself, just as I would do any number of things that would differentiate my child from me and its father if I believed it opened every door to them, so would I not deliberately choose to duplicate a condition which I still felt did not handicap me as a person - but which if I was honest I knew would handicap my child in the world's eyes and in everyday life.

8:48 p.m.  

Post a Comment

Subscribe to Post Comments [Atom]

<< Home