China's population is almost twice that of the US and EU combined. If what you're lacking for is patients, there's no better place to go to.
Not only that, but we're also a lot more obsessed with patient privacy. If somebody dies of cancer, there's no headline news about them dying of a cancelled trial, even if that's actually what happened. If patient data leaks, there's both a PR nightmare and legal consequences for the institution. That drives priorities.
I wouldn't be surprised if (some) Chinese researches are allowed to SELECT * from citizens where disease = 'bone_cancer', whereas researchers in the US have to send people to waiting rooms in hopes of catching an eligible patient[1]. Unless this gets changed, things won't get better.
We really need to start optimizing for min(deaths) instead of min(bad_pr) or min(outrage). That's a genuinely hard problem in a democratic society that respects the right to free speech (which, to be clear, is a very good society to live in IMO). In a way, it's a good problem to have.
[1] is a really good and accessible overview of why drug trials are so hard and what could be done to make them easier, it's worth checking out for anybody who wants to dive deeper into the subject.
One of the leading researchers in MRI methods development has been doing collaborative work in China for many years. About 5 years ago I was chatting with him about how he's in China so much lately and he told me that the great thing about China is he can get an idea rolled out en masse to over 100 scanners(!!) and have multiple hundreds of case results in various different diseases in less than a month(!!!). This is shocking speed and quantity of data as these things go. Who wouldn't prefer to work in that environment?
I strongly disagree. There is no need for humans to be immortal, and there is nothing wrong with tacking healthcare research to public opinion at a bare minimum. If nothing else, it helps ensure our medical care doesn’t veer too far off track.
please consider revisiting this post when/if you or a loved one are on the receiving end of a terminal illness diagnosis. which i don’t wish on anyone.
as someone who lives in that perspective, and has lots many loved ones to such diseases.. I wonder if you have ever really considered the prospect of immortality and the implications.
A lot of our worldly meaning is derived from the fact that the clock is ticking. Death of progenitors increases the quality of life for the offspring in almost every single metric, more so for long-lived species that require little protection past a certain growth milestone, and personally I see it as a specific 'human arrogance'; if someone had the idea of "Let's make all the field mice immortal" the first opinion would be "that's ridiculous, the ecosphere would be thrown entirely out of balance, the entire predatory chain would be upheaved."... but when we talk about human immortality it always falls back to "Well, don't you miss dear old Grandma serf?"
I miss her dearly, but the fact of the matter is that the world wouldn't survive long without a death/life cycle for its' inhabitants, and I think that should include the ones that are the most dangerous to the world at large.
p.s. if you need a laymen excuse : i've read enough scifi dystopia tales that begin with the concept of human immortality and the gradual fall of every single moral barrier or raison d'etre ; I don't think that premise is too far from what may happen if humanity is ever given a choice against death.
i am sorry to hear about the losses you’ve had to endure. i feel it’s an over-large step to go from which factors should guide research to whether humanity should seek immortality. if a child is stricken with glioblastoma before they’ve had a chance to experience life, i would argue that it would be positive and humane for society to have developed the tools to give that young life a chance and their family some hope.
My mother died when I was on the verge of turning my life around. There are new developments in treating the cancer - glioblastima - than there were at the time. She was worried sick about me and knew I was on the right path, but never actually saw me succeed. I think about it a lot.
I still fully believe we need to start discussing how long we want to live. Along-side maybe getting to show my mom my fortunate outcome, Putin could be up for another 25 elections.
We shouldn’t arrive at that moment without an answer to that question.
Besides, death comes for us all. It’s the most natural thing of all. We should be less scared of it, and instead use it to understand we have a limited time we must make the most of.
thank you for sharing this story and i hope the miracles in glioblastoma treatment continue to astound. i do agree that it’s fundamental to live life knowing there are no guarantees and that we must therefore make the best of every allotted bit of time. there is a famous saying about science progressing one funeral at a time because new perspectives sometimes require that the old guard step aside before they can take hold.
This might just be the dumbest thing I heard all day.
I have a family member who got cancer in their 50's and they've now lived 25 years longer than how long they would have lived without healthcare research. They would have been dead if it was 10 years earlier and the research wasn't where it was.
They literally gained a third of a lifespan just because someone decided to spend money on research. They would have never seen their kid get married or have their own kids.
Now multiply that by hundreds of thousands if not millions who have the same diagnosis.
Nobody's trying to be immortal, we're just trying to live the fullest lives possible and give ourselves a good amount of healthy years.
If you think healthcare is a waste of money I am not sure what you think is more important than your health, maybe an AI app to create shareholder value?
Not only that, but we're also a lot more obsessed with patient privacy. If somebody dies of cancer, there's no headline news about them dying of a cancelled trial, even if that's actually what happened. If patient data leaks, there's both a PR nightmare and legal consequences for the institution. That drives priorities.
I wouldn't be surprised if (some) Chinese researches are allowed to SELECT * from citizens where disease = 'bone_cancer', whereas researchers in the US have to send people to waiting rooms in hopes of catching an eligible patient[1]. Unless this gets changed, things won't get better.
We really need to start optimizing for min(deaths) instead of min(bad_pr) or min(outrage). That's a genuinely hard problem in a democratic society that respects the right to free speech (which, to be clear, is a very good society to live in IMO). In a way, it's a good problem to have.
[1] is a really good and accessible overview of why drug trials are so hard and what could be done to make them easier, it's worth checking out for anybody who wants to dive deeper into the subject.
[1] https://www.complexsystemspodcast.com/episodes/drug-developm...