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Should you edit your children’s genes?

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In the fierce debate about CRISPR gene editing, it’s time to give patients a voice, by Erika Check Hayden:

Ruthie Weiss’s basketball team seemed to be minutes away from its fourth straight loss. But even as she stood on the sidelines for a brief rest, the nine-year-old had not given up. She convinced the coach to put her back in the game. Then, she charged out onto the court, caught a pass from a teammate and drove straight to the basket. Swish! Ruthie scored a quick two points, putting her team in the lead. As the game clock wound down, she scored again, clinching the victory. The team had earned its first win of the season, and celebrated as if it had just taken the national championship. A couple of parents from the opposing team even stopped by to congratulate Ruthie, who had scored all of her team’s 13 points: “Wow, she’s unbelievable!” they told her mum and dad.

What makes Ruthie’s performance even more extraordinary is her DNA. Because of a misspelling in one of her genes, she has albinism: her body produces very little of the pigment melanin, which means that her skin and hair are fair, and that she is legally blind. Her visual acuity is ten times worse than average. She is still learning to read and will probably never be able to drive a car, but she can make out the basket and her teammates well enough to shoot, pass and play.

In January, Ruthie’s dad Ethan asked her whether she wished that her parents had corrected the gene responsible for her blindness before she was born. Ruthie didn’t hesitate before answering — no. Would she ever consider editing the genes of her own future children to help them to see? Again, Ruthie didn’t blink — no.

The answer made Ethan Weiss, a physician–scientist at the University of California, San Francisco, think. Weiss is well aware of the rapid developments in gene-editing technologies — techniques that could, theoretically, prevent children from being born with deadly disorders or with disabilities such as Ruthie’s. And he believes that if he had had the option to edit blindness out of Ruthie’s genes before she was born, he and his wife would have jumped at the chance. But now he thinks that would have been a mistake: doing so might have erased some of the things that make Ruthie special — her determination, for instance. Last season, when Ruthie had been the worst player on her basketball team, she had decided on her own to improve, and unbeknownst to her parents had been practising at every opportunity. Changing her disability, he suspects, “would have made us and her different in a way that we would have regretted”, he says. “That’s scary.”

Ethan and Ruthie are not the only people pondering these kinds of questions. The emergence of a powerful gene-editing technology, known as CRISPR–Cas9, has elicited furious debate about whether and how it might be used to modify the genomes of human embryos. The changes to their genomes would almost certainly be passed down to subsequent generations, breaching an ethical line that has typically been considered uncrossable.

There are many considerations. This isn't as straightforward an issue as it might seem.

Isn't there a big movement, especially among autistics, to say their "disability" is part of what makes them special rather than being a separate and negative thing?

Yes there is. Which is why there are no absolute answers here. 

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