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- Hacker News
- Two years ago, my then 81-yr old father, who had Progressive Supranuclear Palsy, was recommended to get back surgery to relieve chronic and debilitating pain. The neurosurgeon said it's routine surgery and he's done it on people much older. We ultimately decided against it and found that a simple wedge pillow to sleep on relieved his pain. A bloody $50 pillow. And this came from a recommendation from a physiotherapist.
What's particularly galling is the recovery from back surgery would've taken at least 6-9 months of rehab and my father's PSP was already sapping his motor skills and yet the surgeon was pushing ahead.
Even with my mom I've had to intervene on several occasions against the doctor's utterly idiotic ideas. Thank goodness for AI to at least make us conversant to ask the right questions of these doctors.
by amoorthy - Physios really are greatby uurrnn
- Here are some illustration of people living with this disease:
https://en.wikipedia.org/wiki/Snijders_Blok%E2%80%93Campeau_...
- I can't possibly imagine what the parents are going throughby oceansky
- I found the description of how they moved apartment, but kept the old one with her room, very saddening. I get it - an aversion or a shrine, hard to say, or both I suspect (in grief I have had both feelings at the same time), but I get it.by vintagedave
- > When Mei was 4, one of her kindergarten teachers pulled Linda aside: Mei didn’t draw or write as well as the other kids and her language skills weren’t developing normally. Her mother might want to get her evaluated, the teacher said. In March 2023, Mei was diagnosed with global developmental delay, a broad label with many causes. Specialists explained that some of Mei’s behaviors—the funny sounds she liked to make, for instance—were associated with autism.by wnevets
- It says so much about how our society treats the neurodivergent that it's considered a non-extreme opinion that a dead child is preferable to an autistic one.by ToucanLoucan
- There are many children with life-threatening rare diseases that would be much better candidates for risky experimental treatment like this. Very sad case.
- This is what makes this whole thing so unethical. All the researchers cared about was that the parents said they had a lot of money and didn't care to spend it.by array4277
- Cases like this are heartbreaking, but they're also a reminder that failures like this ones need to be published just as prominently as success. Gene editing is still a young field, and if negative outcomes remain hidden, other researchers can't properly assess risks or make improvementsby 1saadcodes
- I am baffled by Nature saying would this have been communicated during peer-review this would have been taken into consideration, but because this was discovered after it doesn't count anymore.
It's like a teacher saying if you get caught cheating during the exam you will be punished, but if it's after you can get "scott-free."
by Departed7405 - It is important to note that in China, developmental delays are treated with ridicule for the affected and as a source of shame for the families.
I'm not passing judgment on the parents, I'm just pointing out that how society treats developmental delays is extremely important to the quality of life of these people.
Here in the US autism was considered a "mental illness" until the 1980's.
by Shitty-kitty - I think this is an important nuance that may be missed in the article. The teacher pulling the parent aside to ask her to check her child made me remember what my partner said about the time they moved to China as a kid and how they were treated in school because they were falling behind their peers. (In that case because they couldn’t keep up with the natives due to language skills.)
I too do not mean this particular teacher is to blame rather than the way society works.
by jwrallie - > The paper had an enthusiastic reception. “These promising results might pave the way for the development of an effective clinical treatment,” Kevin Bender, a neuroscientist at UC San Francisco, wrote in an accompanying commentary. At the time, Bender had no idea that a girl had received it and was already dead. Meanwhile, Chinese state media, CCTV, called the work “the first ray of hope” for “countless families suffering such diseases.”
Oof, there's something deeply unjust about that, a kind of "adding insult to fatality."
People celebrating that a new treatment will save children and give hope... with no acknowledgement that it was just tried and cost you both.
by Terr_ - "Millions of deaths don't matter if we can save just one." is an increasingly common take.by drekipus
- Sounds extremely similar to the first victims of Macchiarini. He and his entourage were writing and publishing success stories about his experiments when the victims had already died.
- There's so many ethical problems with the events as described in the article. The worst to me seems to be that the researchers/doctors seem to have downplayed the risks here. Which for a never before tried gene therapy that is meant to work inside the brain are absolutely enormous. The ethical issues around the money seem minor in comparison with that and the fact that they seem to have ignored similar side effects in the monkey experiments.by fabian2k
- In Silicon Valley this is considered a successful learning experience.by ares623
- This is the EXACT reason why the FDA exists.... this.... shit.... tricking desperate parents into paying millions of desperate dollars when anyone who knows anything about it knows the "experiments" just cause death. Yet another grift.by superxpro12
- I’m very puzzled why this wasn’t replicated in eg a study in rats first (where you duplicate the mutation, and then attempt to cure it).by trollbridge
- Were there any actual doctors in the researchers ? They should have their license immediately revoked for omitting side-effects, thus breaching their oath.But this is China, so I am not sure there will be accountability, unless this get even more attention.by Departed7405
- Reminds me of the TGN1412 drug trial where patients had severe immune reaction and almost died. Sad that the story suggests they ignored all the signs that would suggest humans would have a bad immune reaction to it and proceeded anyway.
https://www.reddit.com/r/Documentaries/comments/jrraz7/when_...
by cowlby - An article about the complicated issue that is a child with a non-lethal developmental disorder getting a treatment that ends with the tragedy of the headline. The article might be sensationalizing the situation, but it makes the doctor out like a monster and as the facts read I can't say I disagree.
That the treatment was inconclusive in the animal studies isn't particularly shocking. The brain is one of the more complicated parts of a human body after all. Ethics and safty concerns seemed to get ignored all the way to the actual treatment speaks like the money and potential fame was all the medical staff involved were concerned with. The parent's aren't blameless, they wanted to fix a child who probably would have lived with a below average quality of life. The article claims they were mislead to believe this treatment was safer than it actually was.
The treatment vehicle seems like the cause of death as reported toward the end, but there are words about the animal testing that imply this could have been a known risk with the treatment as a whole. The number of things being found with hindsight remind me of "move fast and break things" development. It really sounds like cutting edge (bio)tech has ethics get ignored when money and fame are on the table.
by lconnell962 - kinda sounds like in vivo test driven devby 395trek
- Wealth can override pretty much anything; ethics, decency, common sense. This is a lesson humans have had thousands of years and countless examples to learn from and still haven't managed.
- Even if that's the case, the tragedy should have been disclosed reponsibily.
The fact that the parents had to make further efforts to go through their daughters death to warn others just feels wrong.
by crvdgc - > It really sounds like cutting edge biotech has ethics get ignored when money and fame are on the table.
Wouldn't be the first time. Nor the first time the actual evidence of effectiveness of the treatment (i.e. even when working as intended) was ignored.
- > The number of things being found with hindsight remind me of "move fast and break things" development.
It is the same mentality in all of business rn, everyone is ruthless and doesn’t give a single fuck about consequences because they won’t be coming for another 2 years at least and people have a short memory
by taurath - I didn't read it as making the doctor a monster. What I saw in the story is an example of how the road to hell is paved with good intentions.
- Many years ago I was attending pre-surgery for a hip replacement surgery for my sister, who had known severe reactions to anesthesia (actually required a tracheotomy for a previous reaction). The anesthesiologist asked to speak to us privately and informed us that in their opinion, my sister had maybe a 1/3 chance of not surviving the surgery. They also mentioned that this was a breach of protocol and they could get in trouble for talking to us directly, but their conscience wouldn't let them do otherwise. We returned and asked the surgeon if they really thought the risk justified any potential benefit. The surgeon shrugged and said "probably not, feel free to call it off". Keep in mind that nobody on the care team had previously discussed any risk or indeed any tradeoffs whatsoever. This was at one of the best-regarded children's hospitals in the USA.
The lesson for me is that you must advocate for yourself and your loved ones in the medical system, because doctors will not do it for you; they may not even perform the most basic risk assessments. And you have to try to quantify risk yourself, because doctors will refuse to give you the slightest hint of any number attached to risk (I know, I've tried many times).
by senderista