Scientists, ethicists slam decisions behind gene-edited twins: By John Timmer - ARS Technica

[Patient4Life]

Scientists, ethicists slam decisions behind gene-edited twins

The goal of the editing was to damage the CCR5 gene, which encodes a protein that HIV uses to enter cells during infection. He and his colleagues used a gene-editing technique that is expected to generate small deletions. They targeted one of these deletions to a spot in the center of the gene that's the site of a mutation that blocks HIV infection. The data shared so far indicates they were successful in terms of generating deletions, but whether or not they inactivated the gene is far less clear.

 

[Patient4Life]

Chinese scientists raise ethical questions with first gene-edited babies
Science News - Tina Hesman Saey

Potential complications

Fauci and others are concerned that gene editing may sometimes go astray, damaging other important genes, which could lead to health problems such as cancer later in life. The babies aren’t even guaranteed to escape HIV either: People who have defective CCR5 genes may still be infected with a less common form of the virus. And people with missing or defective CCR5 genes are more susceptible to serious complications from West Nile virus infections, Fauci says.

Even if Lulu and Nana don’t end up with any health problems as a result of He’s genetic tinkering, the experiment is still bad science, says Julian Savulescu, a bioethicist at the University of Oxford. “I liken it to Russian roulette. You can pull the trigger and not kill, but that doesn’t mean what you did was right.”

If He’s claims are true, the work is “monstrous” and could set back gene-editing research, says Savulescu, a self-described fan of the technology. Savulescu has argued that parents may one day have a moral obligation to edit their children’s genes (SN Online: 11/28/17). But this experiment gives no real advantage to the babies and puts them at significant risk of harm, he says. “The risk just wasn’t reasonable in this case. It’s a bad scientific study.”