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Old 01-21-2007, 09:01 AM   #1
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"Designer" Babies Designed To Have Disabilities

So what do you think of this? If people without disabilities can have "designer" babies to the specifications they choose, and to look like them-then what about this? What about the concept of designer babies in general?

It might be already happening, if that survey result is true

CHICAGO, Illinois (AP) -- 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.

And a recent survey of U.S. clinics that offer embryo screening suggests it's already happening.

Three percent, or four clinics surveyed, said they have provided the costly, complicated procedure to help families create children with a disability.

Some doctors have denounced the practice. Others question whether it's true. Blogs are abuzz with the news, with armchair critics saying the phenomenon, if real, is taking the concept of designer babies way too far.

"Old fear: designer babies. New fear: deformer babies," the online magazine Slate wrote, calling it "the deliberate crippling of children."

But the survey also has led to a debate about the definition of "normal" and inspires a glimpse into deaf and dwarf cultures where many people do not consider themselves disabled.

Cara Reynolds of Collingswood, New Jersey, who considered embryo screening but now plans to adopt a dwarf baby, is outraged by the criticism.

"You cannot tell me that I cannot have a child who's going to look like me," Reynolds said. "It's just unbelievably presumptuous and they're playing God."

Embryo screening, formally called preimplantation genetic diagnosis, or PGD, is done with in vitro fertilization, when eggs and sperm are mixed in a lab dish and then implanted into the womb. In PGD, before implantation, a cell from a days-old embryo is removed to allow doctors to examine it for genetic defects.

The entire procedure can cost more than $15,000 per try.

The survey asked 415 clinics to participate, 190 responded and 137 said they have provided embryo screening. The most common reason was to detect and discard embryos with abnormalities involving a missing or extra chromosome, which can result in miscarriage or severe and usually fatal birth defects.

The survey is being published in an upcoming print edition of the medical journal Fertility and Sterility. It appeared in the online edition in September. Clinics were asked many questions about PGD, including whether they'd provided it to families "seeking to select an embryo for the presence of a disability."

"We asked the question because this is an issue that has been raised primarily by bioethicists as something that could happen," said Susannah Baruch of Johns Hopkins University's Genetics and Public Policy Center.

"It's sparking a lot of conversations," she said. "These are difficult issues for everybody."

While it's technologically possible, whether any deaf or dwarf babies have been born as a result of PGD is uncertain. The survey didn't ask. Participating clinics were promised anonymity, and seven major PGD programs contacted by The Associated Press all said they had never been asked to use the procedure for that purpose.

PGD pioneer Dr. Mark Hughes, who runs a Detroit laboratory that does the screening for many fertility programs nationwide, said he hadn't heard of the technology being used to select an abnormal embryo until the survey.

"It's total nonsense," Hughes said. "It couldn't possibly be 3 percent of the clinics" doing PGD for this purpose "because we work with them all."

He said he wouldn't do the procedure if asked.

"To create a child with a disability because a parent wanted such a thing ... where would you draw the line?" Hughes wondered.

University of Minnesota bioethicist Jeffrey Kahn has a provocative response.

"It's an ethically challenging question and certainly it will trouble people, but I think there are good, thoughtful reasons why people who are deaf or ... dwarves could say, 'I want a child like me,"' Kahn said.

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Old 01-21-2007, 09:50 AM   #2
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I've heard about this...it just seems weird to me, like playing God.

It's not my cup of tea, but frankly I don't know where I come down on this. There's too much yet to learn about it.

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Old 01-21-2007, 01:53 PM   #3
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These maldesigned people will bet at the mercy of my race of augmented superpeople; and if I had the power to engineer my child to be smarter, stronger and enjoy good health I would do it without hesitation.
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Old 01-21-2007, 02:19 PM   #4
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Re: "Designer" Babies Designed To Have Disabilities

Originally posted by MrsSpringsteen
"You cannot tell me that I cannot have a child who's going to look like me," Reynolds said. "It's just unbelievably presumptuous and they're playing God."
How the hell is deliberately forcing a child to live with a "not-normal" condition (I wouldn't consider dwarfism to be a "disability) not "playing God"?!?
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Old 01-21-2007, 02:26 PM   #5
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I only used the word disability becasue they did in the article, and I preferred it to "genetic defect", which was the headline of the article (not being argumentative Dave C, just to clarify that ). Dwarfism is a disability as far as how it limits being able to function compared to how the average height person can function in the same world. I would say that yes indeed you are playing God by engineering a disability in your child. I suppose some people might argue about it as God vs science/genetics and what causes disabilities, I don't know..
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Old 01-21-2007, 07:05 PM   #6
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Re: "Designer" Babies Designed To Have Disabilities

Originally posted by MrsSpringsteen
Cara Reynolds of Collingswood, New Jersey, who considered embryo screening but now plans to adopt a dwarf baby, is outraged by the criticism.

"You cannot tell me that I cannot have a child who's going to look like me," Reynolds said. "It's just unbelievably presumptuous and they're playing God."
This woman wants a child who looks like her, yet I wonder how she'd feel if she found out her parents considered ending the pregnancy when genetic screening showed she was going to be dwarven and therefore not look like them? (In this case I am assuming that her parents weren't dwarven also.)

I have also heard of cases where deaf parents have been ostracised from their families when they have chosen to have their hearing-impaired children fitted with cochlear implants.
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Old 01-22-2007, 09:11 PM   #7
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Being deaf, or a dwarf is a disability, and to put that sort of thing onto a child, is just horrendous.

I know that people with disabilities need to see themselves as best functioning as possbile and have faith and strength in themselves, and i agree with this, but truly, to activily choose to have your child disabled in some way is disgusting. Should a parent in a wheelchair hobble their child, or cut off a leg so the child is in a wheelchair as well so they're the "same"?

While I don't believe in designer babies, ie. choosing hair/eye colour, and messing aroudn with embryos, I do think that irradicating debilitating diseases, and phasing out passing these genes from one generation to another is a good thing.
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Old 01-22-2007, 09:26 PM   #8
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I'm not really sure how I feel. I don't have a disability, nor does anyone in my family, so I can't possible understand how I think these people should feel about their lives and families. There was a dwarf family at my high school. Both parents and all the kids were dwarfs. I guess I'm not too keen on supporting any kind of genetic engineering and aborting babies based on prenatal tests, but I'm not against people with disabilities having babies, even if it puts the baby at risk for the disability. I don't think this is any worse than "normal" parents aborting a baby with Down's syndrome or insisting their child be a girl with blond hair and blue eyes. In general I think it's quite rude and unfair to tell another couple how their family should be and how they should raise their children, but I know for my future family, I am uncomfortable with playing God when it comes to my children.
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Old 01-23-2007, 03:57 AM   #9
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Originally posted by A_Wanderer
These maldesigned people will bet at the mercy of my race of augmented superpeople; and if I had the power to engineer my child to be smarter, stronger and enjoy good health I would do it without hesitation.
Ummm. . .you're kinda freaking me out there A_W

Seriously though. I don't agree with this kind of genetic engineering. It seems like the height of selfishness to me.
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Old 01-23-2007, 08:58 AM   #10
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^ That's precisely what it is. I have one eye, I'm legally blind, and I'd rather die than put my child through the bullshit I've had to put up with because of it. This really makes me ill...and I'm not a fan of the "designer baby" thing anyway, it really is playing God.

The problem is you have folks with various disabilities/differences/whatever-we're-allowed-to-call-them-today's, and they've bought into the myth that overcoming their condition has somehow made them "better people". But then they make the incredibly false assumption that if their child faces the same things they'll be a "better person" also. It's crap. I suppose if you're going to allow the whole designer baby thing then you can't really stop a person from attempting to have a child with the same conditions that they have, but it's completely misguided...someone needs to slap a bit of sense into these fools.
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Old 01-23-2007, 10:30 AM   #11
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Originally posted by CTU2fan
That's also a problem and I think not really what people with disablities want.
They want to get treated equally, but when every now and then some people decide to go from disabled to handicapped to challenged to whatever they don't get treated equally, and I think it makes it even harder if you always have to think what term is appropriate now.

I'm not for "designing" babies at all, and I would never support it.
Even less in creating children with any kind of disability.
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Old 01-23-2007, 06:06 PM   #12
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Anyone who doesn't wish for the absolute best for their child is not fit to be a parent, I reckon. Anyone goes so far as wishing to purposely disadvantage their child and saddle them with an impairment, which is going to make their life more burdened than luck has the potential to, is morally disabled.
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Old 01-26-2007, 06:17 AM   #13
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If I were to design my baby, the one and only thing I would be trying to do would be to completely eliminate the possibility of he/she having any disabilities.

That's all I'd "design" a baby for. Even if there was a way of making sure that the baby didn't like John Howard or making sure it wouldn't somehow develop an ounce of respect for Sydney as a city or to stop them from supporting Man Utd, I wouldn't care.

As long as they're opportunities and possibilities in life aren't hindered by having a disability of some sort.
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Old 01-26-2007, 01:54 PM   #14
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There was a story about this at salon.com several weeks ago, which in their usual fashion had links to various blogs, including some where both deaf and hearing posters were participating in debating the issue. I can't recall precisely which blogs I wound up looking at anymore but, while I wouldn't say reading them fundamentally changed my position on the matter (which in short would be No, it's a bad idea), I couldn't help being struck by how imperious and bossy many of the hearing posters came across--"We know everything about how You Handicapped People think, so let us break it down to you why that's all f*ed up", etc. At worst, this took of the form of some really ugly, sneering comments analogizing deaf people to lepers and the mentally retarded, as if the underlying question of principle made it OK to collapse all handicapped people's experiences of the world into one; at best, there were some well-meaning but rather insensitive comments pontificating about the selfishness of wanting someone else to "share your predicament" when nothing in any of the deaf posters' remarks suggested they saw it remotely like that. What the deaf posters who defended their right to consider embryo screening--almost all of whom concluded by saying, "But personally, I'd choose not to"--seemed to be emphasizing was that for many deaf people, particularly those who are deaf from birth and have spent much of their educational and professional lives in all-deaf environments, they experience themselves first and foremost as people who happen to communicate with their hands, whose mother tongue is ASL or BSL or what have you, not as "people who can't hear," and they experience the resulting subculture this gives them access to as a thing of beauty well worth preserving. While it's easy enough from our nondeaf perspective to see this attitude as myopic--sure, deaf people can function as well as hearing people in many situations and environments, but there are many others where they can't--I think it's important to first make the attempt to understand how they see themselves on their own terms; having evolved such a full-fledged alternative socialization and communication system is an amazing and powerful thing worthy of respect (and lipreading, which is inevitably 50%+ guesswork, makes a piss-poor substitute). I think in this sense deafness may be somewhat unique, and not so readily analogizable to the individual-triumph-in-the-face-of-adversity narrative we tend to associate with the term "handicapped."
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Old 01-26-2007, 03:20 PM   #15
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to be slightly self-interested in this topic, is being gay a "disability" in this context? would you design your baby to be straight if you could? would a lesbian couple design their baby to be gay if they could?

if we only want the best for our child, to give them every possible advantage, then wouldn't you want them to be straight?

and what are the ramifications of this if we are to view difference -- not severe handicapps, but things like homosexuality or deafness or other variances -- as an obstacle to be overcome and, as good parents, we'd want to remove these obstacles for our children.

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