Wednesday, July 23, 2008

Designing our Children

Parents have a history of wanting for their children what they themselves have not had. Well most parents, that is.

A common thread of last week’s Chautauqua lectures was the idea of genetically engineering our children. It is conceivably possible to screen for sex and any number of other characteristics in a human embryo.

Arthur Caplan, the Director of Bioethics at U Penn, said he had recently been consulted by a physician with a question of ethics: A deaf couple had come in to see him concerning their desire to have a baby and make sure that it was congenitally DEAF. Caplan advised his colleague against supporting this request, stating that he recommends only intervention that has a positive outcome. The couple subsequently found someone else willing to help them.

This is certainly not a an open and closed case. I can understand how much easier it would be to raise a child that was just like his/her parents. Theirs would be just another happy family who communicated by signing.

But what about that child’s interaction with the hearing world? Is it really in any way fair to saddle the baby with a life-long disability? I know many deaf people balk at thinking of themselves as disabled, but it is clear to me that the ability to hear what’s going on in the world is important from the standpoint of safety and just plain quality of life.

This is no longer a question of technology. It is there today to offer up deaf children, children with genius IQ’s, children with superior athletic ability, and on and on and on. Where would you ethically draw the line? Or would you prefer to totally ignore the possibilities presented by this new technology?


Blogger Kellyann Brown said...

Choosing to make their children deaf seems very strange to us, doesn't it? But for people within the deaf community, deafness is not a disability. It would be like a chinese couple who lived in Chinatown where a majority of people spoke Chinese wanting a Chinese child. What if the Chinese mother wanted a child, but needed an egg donor, would the doctor help her find a Chinese donor?

Growing up, I read a book, "In This Sign" about a hearing child growing up with deaf parents. It's a very sad books which writes of institutionalized deaf people being punished for using signing, a hearing daughter forced to grow up too quickly because she is made to translate for her parents and just day-to-day things that happen to people. It is an important book because it writes about the separateness that the deaf people experienced, even from their own daughter.

Just something to think about...

2:49 PM  
Blogger Barbara said...

Kelly -- I can totally understand and agree with a Chinese couple wanting a Chinese child. But hopefully being Chinese does not present the same level of difficulty in living in our world that deafness does. It does not mean you will never hear a beautiful violin or an emergency siren.

On the other hand, I can appreciate the problems of a household where some people hear and others don't. I would just hope that the child's best interest is always at heart when difficult decisions like this are made. For in most cases the child will outlive his or her parents and either feel compelled to repeat this cycle or experience extreme loneliness.

3:49 PM  
Blogger Mo said...

Wow. That's an incredibly tough question. On the one hand, I'd like to say that it's best not to meddle, and not even from a religious standpoint, but because it might be hard to know when to stop, but that's a bit of a slippery slope argument, so I'm not sure that's the best answer either...

3:53 PM  
Blogger steve said...

Little peckers...I'd draw the line at little peckers. my boy has a big pecker and he can thank my dad for that!

I sdon't mean to make light of your topic, but I AM Steve #1 and we don't want anyone getting me mixed up weith Steve#2, who seems to be a real good guy!

4:19 PM  
Blogger steve said...

i have to add something a bit MORE son had a deaf teacher and from my experience they are very proud. part of his class activity was to study about a group of deaf folks that even thiough they could be cured, they chose not to be. Thats all I remember.

4:23 PM  
Blogger Barbara said...

Mo -- Not meddling lets evolution take its natural course and pretty much insures there will be about the same number of boys as girls born. But it also allows for children with horrific birth defects and other mistakes of nature. We now have the ability to guard against some of these things, but we also have the power to just keep going with that ability. Therein lies the dilemma. I rather liked Caplan's rule of intervening only if the outcome is positive. Of course for those deaf parents positive would be defined as having a deaf child. It's a vicious ethical circle...

Steve #1 -- I am quite sure I will always be able to distinguish your comments from those of Steve #2. I don't think pecker size came up in the medical ethics discussions last week. Short ones, tall ones, fat ones, small ones, isn't there room for all sizes???

4:26 PM  
Blogger Barbara said...

Steve #1 -- I still can't understand why anyone would CHOOSE to be deaf if there was the possibility to hear!

4:27 PM  
Blogger Kellyann Brown said...

This is a big, big topic, Barbara, for example, if you had a deaf child who was a good candidate for a choclear implant, would you put him through all the surgeries/therapy to make him be able to "hear", knowing that your definition of hearing is different that his will be? Believe it or not, there are some people that make the choice not to have coclear implants for their children.

Knowing how important music and other auditory pleasures are to you, I can understand where you are coming from. On the other hand, when I was in high school, I went to Washington D. C. with Closeup. They paired us with other schools, including Berkeley School for the Deaf and Galludet College. My peers were often born deaf b/c their mothers had rubella when they were pregnant. I made many friends with the deaf students and learned a bit of sign language that I still use today (typical of high schoolers, they mostly taught us the slang and the swear words). We had great discussions and all the mixer-type dances and events that other CloseUp groups had and at the end I came away with an appreciation for the deaf as a community. Afterwards, my mother asked me if their parents should have aborted them when it became clear that their mother had been exposed to rubella. Omigosh, that brought me up short!

I guess in my line of work, I see so many of those kiddos which have visable birth defects and those that have those not-so-visable ones that they have just become kiddos to me. My mom has a hard time understanding this. "Don't you feel sorry for them?" she asks me. She also used to ask me if I should n't spend my energy teaching kiddos where I could really make a difference, but she's stopped that (praise be!). After awhile I began to realize that the kiddos who I feel the most sorry for are those that born with a chip on their shoulders or an inability to get along with other people.

If you look at deafness as a condition, rather than a disability, it puts the "problem" back on society. A condition like sucking at video games (like I do) doesn't "handicap" the individual, it just makes challenges for society to accept (luckily the fact that I can't play video games to save my soul doesn't show on my face or it would destroy my "street cred" ::Laugh:::).

just my 2 cents (and then some, I'm sorry, I humbly appologize for the length of this reply).


6:18 PM  
Blogger Barbara said...

Kelly -- Thank you for kindly teaching me so much about this topic. I sincerely value your opinion because you are down in the trenches every day with children who are special in so many different ways. You notice I did not use the D word!

6:26 PM  
Blogger Kellyann Brown said...

::Laugh::: I know, I tend to be kinda passionate about this sort of thing... but after twenty-three years in the trenches (trenchmouth, yech), it still is a passion for me, that's a good thing (I think).

Thanks for your patience,


8:01 PM  
Blogger Pauline said...

Looking at our human history, I would venture to say that if we think a thing is possible, we will try it. We may discuss its potential and its difficulties beforehand, but it's almost assured that, like it or not, some of us will advance the possibilities before we've been able to think through the outcome of every potential problem. (That's called progress.)

Genetic engineering makes possible all sorts of things - synthetic medicines, disease resistant crops, designer offspring. And as you point out, when we begin to discuss the "rightness" of our tinkering with nature, our cherished ideals often come into direct confrontation with someone else's ideas of right.

The desire to have a deaf child goes against the "rightness" of a hearing person's experience. As charming as the idea is, it's impossible to walk a mile in another person's shoes, and those of us "in power" will always have to make decisions based on our own experience and ideals. We've explored this concept in moves like "At First Sight," and (in another context), "I Am Sam."

I think every case has to be weighed individually within the broader sets of laws and regulations we impose on ourselves. How else can we manage?

Gosh, you make me think!

7:13 AM  
Blogger Reya Mellicker said...

Thanks Kellyann - This is just what I was saying to Barbara yesterday on the phone. That deaf culture is a CULTURE and deaf people do not think of themselves as defective.

Only a few years ago, the idea that gay people could be "cured" was still popular among people who thought, "if they can be normal, then why not try?"

Of course gay people ARE normal. And deafness if very normal among humans. I've read about deaf culture and am content not to judge that community for its values.

Barbara I hope you can let go of thinking of deafness as a defect. I really do.

8:03 AM  
Blogger Barbara said...

Before I totally let this go, can we all agree that hearing is still one of our 5 senses, whereas being Chinese or gay is a descriptor, but not a sense. I seriously doubt there is anyone out there in the hearing community who would be willing to give away his/her ability to hear. It doesn't need to be labeled as a defect or a disability, but the lack of hearing ability would seriously affect how all of us who have that ability live our lives.

I applaud people in the deaf community for maintaining their pride and coping with their hearing loss in a way that allows them to fully function in society and to carry on normal family life. I understand their desire to maintain harmony and equality within their family structure.

I wonder how deaf people would react if given the possibility that no one would ever again have to be deaf. That possibility may be just around the corner.

8:40 AM  
Blogger mouse (aka kimy) said...

provocative post and trigger for so many thoughtful comments. just wanted comment on that, no worthy 2 cents, other than strange when I was in graduate school 20 plus years ago in medical sociology we were quite consumed with debating and discussing this very issue....

all I can add is 'boys from brazil'

peckers...interesting thing that pops into people's brains!! ;) love it

10:44 AM  
Blogger Steve said...

My general reaction is that it would be selfish for deaf parents to want to deprive their child of one of their five senses, merely so the child would be more like them culturally. They're thinking of their own needs, not the child's.

I understand that being born deaf is natural for some people. But altering someone to be born deaf is not natural at all, whether you believe it to be a disability or not.

Reya drew the analogy to people being born gay. I would argue that ensuring a child would be born straight would be inherently wrong -- but so would ensuring a child would be born gay. Just let the child develop and be who he/she is.

The only time I could see justifying genetic engineering is to correct debilitating hereditary diseases or some such. And I mean in extreme cases.

I think genetic engineering in general is scary as hell. I am almost universally opposed.

11:26 AM  
Blogger Barbara said...

Mouse -- Yes, the whole idea of genetic engineering does conjure up the Nazi experiments.

Steve -- You said exactly what I kept trying to say only to be told I wasn't understanding the deaf community. I'm just glad I never had to deal with such an issue.

I suppose other groups of people, like midgets, face similar dilemmas when thinking of having children. Not easy decisions in any case...

11:35 AM  

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