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A cutting-edge gene-editing trial in China went disastrously wrong. A family wan

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Submitted ⁨⁨1⁩ ⁨day⁩ ago⁩ by ⁨misk@piefed.social⁩ to ⁨science@mander.xyz⁩

https://www.science.org/content/article/exclusive-death-girl-chinese-gene-editing-trial-was-never-made-public

A cutting-edge gene-editing trial in China went disastrously wrong. A family wants accountability

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  • frongt@lemmy.zip ⁨1⁩ ⁨day⁩ ago

    she died of a severe immune reaction linked to the therapy

    Yeah that’s something that should have been tested for prior to actually starting the therapy.

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    • DougPiranha42@lemmy.world ⁨1⁩ ⁨day⁩ ago

      How? I mean the way every drug for example is tested for safety, they give it to people (healthy volunteers) in escalating doses, and watch them for adverse effects.
      For some treatments, such as gene therapy, it’s not ethical to ask a volunteer to just try it to see if it’s safe. So they look for sick people, who are consenting to risking a new treatment with unproven safety, because their other choice is to not be treated.
      This is how it’s always done. I wonder what you mean when you say the treatment should be tested for safety before giving it to patients.

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      • frongt@lemmy.zip ⁨1⁩ ⁨day⁩ ago

        A virus that doesn’t actually do anything is how. Or a test injection that doesn’t have any virus at all, if the reaction was to something else in it.

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    • spectrums_coherence@piefed.social ⁨17⁩ ⁨hours⁩ ago

      Turns out they did on both mice and primates.

      Unfortunately the brain development data is unconvincing

      And the side effect is only evaluated after the treatment:

      Another potential concern, however, emerged about 1 month before Mei was treated: the final conclusions of a primate toxicology study conducted at PriMed. The company’s report, dated 17 February 2025, concluded all four monkeys that received the therapy, whether at low or high doses, developed moderate to severe liver damage.

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  • spectrums_coherence@piefed.social ⁨16⁩ ⁨hours⁩ ago

    At times during the conversation, Linda became overwhelmed and turned away from the camera, as Jason pressed on. They recalled that when Mei’s birthday came around earlier this year, they said nothing to each other, though they both assumed it was on the other’s mind.

    “We do not discuss that,” Linda said.

    During the call, Linda finally told her husband how she had spent that day. While he was at work, she finally returned to the old apartment and sat down on Mei’s bed surrounded by all her things. She had purchased a chocolate cupcake on the way and now picked at it as she imagined that her daughter was still at her side.

    By the time she finished telling her story, Jason was welling up. Linda glanced over at him tenderly. “My husband didn’t know this,” she said. “I cannot cry every day, but that day, I think, I can cry in the room.”

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  • dbtng@sh.itjust.works ⁨18⁩ ⁨hours⁩ ago

    This is sad, but its going to happen quite a few more times before they really understand large scale gene editing. And even after they do understand it better, probably some percentage of the time its gonna go wrong.

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  • Fourth@mander.xyz ⁨13⁩ ⁨hours⁩ ago

    Holy shit

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  • skhayfa@lemmy.world ⁨1⁩ ⁨day⁩ ago

    Blinded by fame and greediness

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