Gene Editing Techniques Give Hope to Parents–and Raise Ethical Questions

Host Intro: This might sound like science fiction but last week, a group of top scientists opened the door—slightly—to a possible future where genetically modified human babies could become a reality.  But, as Sushmita Pathak reports, the ethical dilemma of tinkering with human DNA has left scientists debating about where to draw the line.

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It’s a Saturday afternoon at Gigi’s playhouse, an indoor playspace in Harlem.

[Start GIGI’s playhouse ambi] 

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The kids are building a hurdle race with mats, a ramp, and a trampoline.

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The kids are of different ages and backgrounds, but they have one thing in common—an extra copy of chromosome 21—Down syndrome. Alfredo is watching his 13-year-old daughter Abigail play. He says she’s no different from any of his other kids.

Alfredo 1

She’s a teenager, and all teenagers give some kind of headache. I mean she’s falling in love so I’m facing any challenge that any parent would face. 

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Some genetic conditions like Down syndrome can be detected through prenatal testing. But what if you could “fix” the condition in utero? Last week, a National Academy of Sciences report said, in the future, technology might allow scientists to edit the genes to prevent serious genetic conditions even before the baby is born.

But Marcy Darnovsky says this opens up an ethical minefield. She is with the center for Genetics and Society in California, and she says, once gene-editing technology is out there, it will be very hard to regulate.

Darnovsky 1  

It would very likely wind up, we’re afraid, being used for purposes of so-called enhancement. 

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Enhancements like blue-eyes or an athletic build….so-called designer babies. And Darnovsky says wealthy people who’d be able to afford the technology could use it to become genetically superior.

Darnovsky 2

I think what we need in this world is less social inequality not more. 

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It’s even more concerning because these genetic modifications would be heritable – meaning they would be passed down to future generations. The new gene would become a part of the traits that are handed down, or what scientists call germline. And if, God forbid, something went wrong with that gene, it would stay with us. And this bothers Darnovsky and others in the scientific community.

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And that actually flies in the face of a very widespread global agreement that the so called human germ line should remain off limits. 

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Darnovsky says even in putting the idea out there, the report goes too far. Jon Entine says it doesn’t go far enough. He is the founder of Genetic Literacy Project, a nonprofit organization.

Entine 1

We want to set up a flexible enough system to encourage innovation but also to allow us to put on the brakes when necessary. This I think is putting on the brakes even before the train is out of the station. 

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Brakes because the report recommends caution. He says those who talk of catastrophic scenarios of what might happen, are shackling innovation for no reason.

Entine 2

The reality of it is that if you try to squelch innovation here in the United States through regulation, it’s just going to happen in places that have far less ethical constraints than are in place in the United States. 

Gigi’s playhouse ambi.

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Back in Gigi’s playhouse in Harlem, I ask Abigail’s dad about what having a child with down syndrome means when in the future kids like Abigail could be “corrected”

Alfredo 2

Well, science is always trying to improve human life but I would not change my choice even if I could because the person that I have in Abigail is someone that has a lot of value and a lot of happiness to us. 

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Alfredo says, it’s not about right or wrong. It’s about choice. Ultimately scientists will have to grapple with the question of if we can, should we? Sushmita Pathak, Columbia Radio News.

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