Parents want accountability after study went disastrously wrong, Science and Retraction Watch investigation reveals

This is an exclusive report from Science News’, jointly organized with Retraction Watch, on a gene editing tragedy.

The tragedy involved two parents paying $860,000 to partially fund an unapproved clinical trial of 1 to save their daughter from a rare neurodevelopmental disease, the work being done by a superstar researcher in China working at a highly prestigious research hospital, the girl subsequently dying because the research behind the trial was shoddy, and the death of the girl being buried. The research behind this was subsequently published in Nature, but the human trial component was completely erased.

This might shape up to be one of the largest gene editing scandals for a while

Try this Wayback Machine link if you are paywalled

There’s also a brief follow-up article by Science News

  • Grimy@lemmy.worldEnglish
    28·
    4 days ago

    Wasn’t even a deadly disease. I’m all for gen editing since it has potential to save lives but killing a 6 year okd because you would rather risk it than have an intellectually disabled child seems a bit intense.

    They paid like 800k for it so this very much feels like “I’m rich enough not to have to deal with the shame my child will bring me”. They should of just accepted her, what she had was basically down syndrome.

    • MyTurtleSwimsUpsideDown@fedia.io
      25·
      4 days ago

      I mean… the researchers lied to the parents about the risks. How are parents supposed to make an informed decision with false information.

      …Qiu and his team downplayed the trial’s risks in describing them to the parents, overlooked safety signals in animal studies, and proceeded even though success was unlikely. “This shouldn’t have gone to trial,” says Steven Gray of the University of Texas Southwestern Medical Center… … “Learning the reality of these missing safeguards has fundamentally changed how we now view the entire project,” says the father… “We did not realize how unusual and dangerous many of the arrangements were.

    • zlatiah@lemmy.worldOPEnglish
      4·
      4 days ago

      Yupppp, which is what IMO made this whole thing extra tragic. The disease wasn’t even that bad to begin with… definitely didn’t necessitate literally doing the very first in-brain gene editing (which is why they needed much higher viral dose… which caused the death)

      I have no clue where the family coughed up the $800K though. They don’t seem to be the particularly rich type based on what the news report was saying, but maybe the parents did hide some information…?