I Have A Rare Genetic Disease. CRISPR Might Fix It.

Happy To Be Here

Greta Johnsen

Improvement, Nerd, Culture, Wbez, Pop, Books, Society & Culture, Nerdette, Self, Tv & Film, Technology, Nerds, Tv

4.8 • 1.5K Ratings

🗓️ 9 March 2018

⏱️ 32 minutes

🔗️ Recording | iTunes | RSS

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Summary

As a four-year old in Juneau, Alaska, Nerdette host Greta Johnsen was diagnosed with an eye condition known as "Best disease." That name is a misnomer for several reasons — the big one being that "Best disease" causes premature macular degeneration — but curiously it happens to be among the best diseases for experimenting with CRISPR, a genetic engineering tool that can be used to edit DNA.

This very special episode of Nerdette follows Greta, her father, and Dr. Bruce Conklin, the scientist who's currently trying to develop the perfect CRISPR system to inject into some Johnsen family eyeballs. Plus, you can't have a conversation about experimental gene editing without discussing the ethical implications of making irreversible changes to human evolution.

“We’d be permanently altering the course of evolution if we decide that we think it’s OK to edit human embryos," says Megan Hochstrasser, a science communications manager and CRISPR expert. "Is that something we want to be able to do as a society?”

That's a great question. Let's talk about it.

Special thanks this week to the Innovative Genomics Institute as well as the Institute for Human Genetics at the University of California, San Francisco.

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Transcript

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0:00.0	This fall, W bez invites you to our upcoming live events.
0:05.0	Join us in person for smart discussions, heartfelt storytelling, and more.
0:09.0	Check out the full calendar now at W be easy.org slash events.
0:16.0	Excellent, excellent.
0:20.0	Hello.
0:21.0	Hey pops, you ready to talk about eyeballs?
0:23.0	Anytime, got a couple.
0:25.0	You? From WBZ Chicago, this is Nurdette.
0:31.0	I'm Tricia Bobita.
0:32.0	And I am Greta Johnson.
0:33.1	And this week's episode is a personal one.
0:35.6	Yes, this week's episode is about the role that Greta might play
0:38.9	in a very new kind of science,
0:40.6	a kind of science that could cure once incurable diseases. If all this works, it could change
0:46.2	human existence forever. Yeah, no big deal. Really big deal, Greta.
0:52.4	So I think the right place to start this story is Juno Alaska when I was a little
0:56.7	kid and I went to the eye doctor for the very first time. I thought we were just going to get glasses, but instead I was diagnosed with the
1:04.6	telephone macular dystrophy. It's a degenerative disease that affects my vision.
1:10.3	It's also called Best Disease as in B-E-S-T best.
1:14.0	That's a weird name considering having this is not the best.
1:18.0	Yeah, having Best Disease means that my eyesight is just going to get worse and worse over time.
1:23.8	Like are we talking blindness?
	...

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