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109

Exclusive: A couple paid more than $800,000 for a gene-editing therapy for their daughter. She died, and it wasn’t made public (retractionwatch.com)

submitted 1 day ago by cannedtuna@lemmy.world to c/world@lemmy.world

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[–] SnoopSqueak@lemmy.today 13 points 1 day ago

I can't imagine this horror.

On 19 February, the family arrived at Xinhua Hospital to sign the consent document and run some tests on Mei’s blood. The form described thrombotic microangiopathy as a possible outcome that would require “prompt treatment.” The children’s version—the one with the “book” metaphor—asked Mei herself to check a box marked yes or no. “If you don’t want to write,” it told her, “you can draw a smiley face instead of your name.”

After 3 days, Mei developed a fever, a common reaction to AAVs that was expected to last for a couple days. Qiu swung by as her fever began to wane. He assured Jason and Linda that their daughter’s condition would soon improve.

It was the exact sequence of symptoms that the consent form had warned the family about. But nowhere did the form explicitly indicate that any of this could end in death, nor did that come up during any conversations with Qiu or the other doctors, Jason and Linda say.

Death is always a possibility, especially when it comes to untested procedures. But to leave that possibility off of the consent form? Wildly negligent.

The results are heartbreaking.

“Mom, I want to go home,” she told her mother, before vanishing into the ward.

Within days of their daughter’s death, Jason and Linda moved into a hotel and, later, a new apartment. Locked away in the old apartment was all their furniture and their daughter’s possessions. They also cut off contact with some of their closest friends. “I don’t know how to reply to them, so I pretend not to see their messages,” Linda says. “I am not so brave to face everything.”

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.

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.”

😢