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
20 Comments
Grimy@lemmy.world · 30 pts · 32d
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 · 29 pts · 32d
I mean… the researchers lied to the parents about the risks. How are parents supposed to make an informed decision with false information.
zlatiah@lemmy.world · 6 pts · 32d
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...?
daggermoon@piefed.world · 6 pts · 32d
Can they edit the depression and OCD out of my genes?
spectrums_coherence@piefed.social · 15 pts · 32d
Maybe yes, maybe no, but they definitely can make you die from immune reponse though.
daggermoon@piefed.world · 3 pts · 32d
That would be a sucky way to die, no doubt.
Imgonnatrythis@sh.itjust.works · 6 pts · 32d
Yes but it might kill you
village604@adultswim.fan · 6 pts · 32d
Thar's not such a deal breaker for depression
The_Lurker@lemmy.world · 1 pts · 31d
It's a win/win. Either way, I don't have to deal with it anymore.
MonkderVierte@lemmy.zip · 4 pts · 32d
Nah, genes only define (among other factors) how likely you are to suffer it.
loaf@sh.itjust.works · 1 pts · 32d
Wouldn’t that be nice? No more med combos!
LibertyLizard@slrpnk.net · 1 pts · 32d
Not currently and this would be very difficult. These disorders are linked to the physical and chemical structure of the brain. The physical structure in particular develops as you become an adult and it would be fairly difficult to reverse once this happens. Shaping the formation process in younger people would be much easier.
The chemistry component might be easier to alter but then why not just use a safer and more reversible chemical approach for that?
Plus a lot of depression is highly linked to the environment you are in. I know it was for me. Changing to a healthier environment is the best cure for most people, though there are some for whom it won't work.
daggermoon@piefed.world · 1 pts · 31d
Oh. So I guess I'm fucked.
Sims@lemmy.ml · -29 pts · 32d
Good money in anti-china news these days.. Narratives seem to be turned on/off like a faucet..
thebestaquaman@lemmy.world · 13 pts · 32d
Some Chinese institution: lies
Some journalist: Points it out
Chinese government: "Stop spreading these baseless lies about us!"
This guy: "There sure is a lot of Sinophobia around here these days!"
village604@adultswim.fan · 13 pts · 32d
And you claim everyone else is a victim of propaganda.
The hypocrisy is pretty funny.
emergencyfood@sh.itjust.works · 11 pts · 32d
One research team breaking / bending the rules to do unethical experiments isn't 'anti-China news'. Although there could be a bit of Science taking Nature down a peg in the article.
Calfpupa@lemmy.ml · -5 pts · 32d
No, but when there's a consistent sinophobic sentiment and people keep putting China in the title despite it not being in the title of article nor relevant to the subject…
emergencyfood@sh.itjust.works · 2 pts · 32d
Huh yes. That's sus.
Throbbing_banjo@lemmy.dbzer0.com · 9 pts · 32d