A pretty shit situation and a forced hand. Risk serious side effects rewriting DNA in the brain, or get seriously mentally disabled and die from a serious but simple genetic disease.
You’re fucked both ways, might as well give it a chance. Devastating for parents and family, but it was the only option with a potential for happy ending.
I’m grateful we’re even beginning to have an option for such a treatment to be possible, and has already saved a child prior to this
The parents were not fully informed of the risks. They were told:
But a top-tier institution such as Xinhua Hospital, Qiu said in one recording, could ensure there would be no safety catastrophes.
And, then they killed their daughter.
Fucking hell.
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.”
😢
If they were truly told, translations aside, there is no serious risk infusing viruses into the brain then that is a pretty shit thing to do
Only slightly related, but I watched the DS9 episode Doctor Bashir, I Presume (S05 E15) recently.
Fantastic episode on the topic of gene therapy on humans. Kind of a heavy episode compared to the shows normal tone, very emotional.
In the episode,
Spoilers
it comes out that Bashir’s parents took him as a child to have illegal gene therapy performed on him. They took him because he had a learning disability. The way the episode describes how he felt being taken to a doctor for the procedure while being incapable of understanding what was going on, I saw a similarity in what was described in the article.
Only thing is it ends on a much better note than what happened here.
