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Archive for Friday, December 22, 2006

Some ponder ‘designer’ babies with inherited defective genes

December 22, 2006

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— 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 4 clinics surveyed, said they have provided the costly, complicated procedure to help families create children with a disability.

Some doctors have denounced the practice, while others question if 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, N.J., 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, 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.

Cara and Gibson Reynolds, whose newborn died last year from a genetic condition linked to dwarfism, pose Dec. 16 on the porch of their home in Collingswood, N.J. Cara says she is outraged by opposition to using embryo screening to allow dwarf people to have dwarf children. A recent survey of U.S. clinics offering embryo screening suggests it's already happening.

Cara and Gibson Reynolds, whose newborn died last year from a genetic condition linked to dwarfism, pose Dec. 16 on the porch of their home in Collingswood, N.J. Cara says she is outraged by opposition to using embryo screening to allow dwarf people to have dwarf children. A recent survey of U.S. clinics offering embryo screening suggests it's already happening.

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."

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.

Comments

Ragingbear 7 years, 7 months ago

I love retarded "What if" editorials like this.

Here's an editorial, what if magical wish granting monkies started to fly out of my butt?

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Linda Endicott 7 years, 7 months ago

This is just plain nuts.

What kind of parent would WANT a child to be disabled, especially deaf?? How could a loving parent want a child to never be able to hear the ocean, or wind, or beautiful music?

And the woman in the story is nuts, too. Who would want a child to be a dwarf? Just so they would be like them? There are other physical problems related to dwarfism that are not pleasant, and who in their right mind would want to subject a child to that?

And it brings up all kinds of questions about things like SSI and SSDI. If the parents CHOOSE to have a disabled child, would they be eligible for benefits? Not that the child would have anything to do with the decision.

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acg 7 years, 7 months ago

This disgusts me. Disabilities are not something to be played around with. I can't imagine what it would be like to have a disability like deafness or dwarfism, but to force that on your child so you don't have to suffer alone? That's disgusting and awful and they should be ashamed. I know they say misery loves company but this is downright ridiculous.

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Linda Endicott 7 years, 7 months ago

I just don't understand this woman. So she's a dwarf. I imagine there were many times in her life when she had a problem with that, before she learned to deal with it.

But to subject a child to it, against their will? At least her parents didn't choose to make her that way.

She's already got somebody like her. Her husband.

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