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The bureaucracy blocking the chance at a cure

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Re: The bureaucracy blocking the chance at a cure

#131

Post by notahacker »

SilentM68 wrote: post #97
rtkwe wrote: post #33

Earlier quoted context omitted.

Because the old state of affairs had desperate people being experimented on by opportunists, charlatans and fraudsters for money. There's work to be done balancing the equities of people with terminal diagnoses but lets not pretend there's no point to the roadblocks to human experimentation on the dying.

That sounds about right. Lots of abuses have been perpetrated by opportunists, charlatans, fraudsters all for money, as you put it. I just want to make sure we correctly distinguish what is meant by "opportunists, charlatans, fraudsters." In the spirit of full transparency, I've listed some of the most well-known cases. Others, due to the Iron Curtain and similar curtains are hard to document, due to lack of visual i…

Quite remarkable how you are unable to make the link between "unethical medical experiments bad" and "maybe we should have some sort of medical ethics regulating whether people are able to perform a medical experiment"...

Re: The bureaucracy blocking the chance at a cure

#132

Post by duskdozer »

bpodgursky wrote: post #81
gzread wrote: post #37

Earlier quoted context omitted.

What were the tweets?

https://www.bbc.com/news/articles/c5yl7p4l11po > Lucy Connolly, 42, whose husband serves on Northampton Town Council, pleaded guilty in September after posting the expletive-ridden message on X the day three girls were stabbed to death in July 2024. > She was released from HMP Peterborough earlier after she was handed a 31-month prison sentence in October at Birmingham Crown Court. Like this one? I mean this is not s…

Missing a piece of that?

>Connolly, from Northampton, called for "mass deportation now" and urged her followers on X to "set fire" to hotels housing asylum seekers.

This is probably not considered protected speech in the US either

Re: The bureaucracy blocking the chance at a cure

#133

Post by Hammershaft »

littlestymaar wrote: post #84

I too, like everyone one else, often hate the tedious and often absurd, effort that bureaucratic procedures sometimes require, but this story doesn't make any sense to me. We're talking about a guy who's used AI to make personalized ground-breaking medicine for his dog but says he spent three months typing a 100-pages long document for the red tape . In reality, current AI technology isn't particularly designed to he…

There's pictures of the dogs tumor progression and scientists from government labs validating his story.

Re: The bureaucracy blocking the chance at a cure

#134

Post by Hammershaft »

thegrim33 wrote: post #78

Am I going crazy here? A completely random person tells AI to generate a novel vaccine/compound, and people are actually upset that there were 3 months of regulatory hurdle he had to jump through before he was able to start injecting this new compound into an live animal's bloodstream? Really?

The animal is terminally ill and the vaccine's slated purpose is to cure that illness. If you're rich & terminally ill these kinds of regulatory mazes are less of a burden, but if you're poor you'll likely die before you can get approval.

Re: The bureaucracy blocking the chance at a cure

#135

Post by Hammershaft »

mmooss wrote: post #20

'Bureaucracy' is commonly used as a trigger word. When I see it, I'm alerted to manipulation and, in some contexts, a certain partisan dogma. After all, who likes bureaucracy? By the same token, who like stop lights or authentication or other structures in life? But every large organization functions using bureaucracy - every highly successful one, every median one, every poor one. > A system originally conceived to…

You're defending a government using force to prevent terminally ill people from voluntarily experimenting on themselves to find a cure and further our understanding of disease. It should not be easier for a layman to design and build a targeted mRNA vaccine then it is to navigate a regulatory maze.

Re: The bureaucracy blocking the chance at a cure

#136

Post by notahacker »

littlestymaar wrote: post #84

I too, like everyone one else, often hate the tedious and often absurd, effort that bureaucratic procedures sometimes require, but this story doesn't make any sense to me. We're talking about a guy who's used AI to make personalized ground-breaking medicine for his dog but says he spent three months typing a 100-pages long document for the red tape . In reality, current AI technology isn't particularly designed to he…

Yeah. It's possible to think that there are cases where lowering the cost of first phase trials or making it relatively simple for people capable of offering informed consent to obtain access to existing safe medications currently undergoing trials for their specific ailments and thinking that a person who claims to have "designed an RNA vaccine" by asking an LLM to teach him about RNA and now wants to inject it into animals under his care might be the exact thing such laws were meant to restrict.

Plus as others have pointed out, LLMs are much better at generating something that looks like compliance documentation than they are at designing drugs (and providing generic background info on compliance processes than they are at relatively little-documented cutting edge research), so if most people aren't instantly sceptical of a yarn spun about how a layman with ChatGPT easily taught himself enough to find an RNA immunotherapy cure for his dog but then was stymied by the amount of typing involved in a 100 page document, it's a good indication of why barriers to even nominally consenting people trying experimental stuff exist.

Re: The bureaucracy blocking the chance at a cure

#137

Post by bpodgursky »

duskdozer wrote: post #132
bpodgursky wrote: post #81

Earlier quoted context omitted.

https://www.bbc.com/news/articles/c5yl7p4l11po > Lucy Connolly, 42, whose husband serves on Northampton Town Council, pleaded guilty in September after posting the expletive-ridden message on X the day three girls were stabbed to death in July 2024. > She was released from HMP Peterborough earlier after she was handed a 31-month prison sentence in October at Birmingham Crown Court. Like this one? I mean this is not s…

Missing a piece of that? >Connolly, from Northampton, called for "mass deportation now" and urged her followers on X to "set fire" to hotels housing asylum seekers. This is probably not considered protected speech in the US either

Lol there would be 40 million Americans in jail if this wasn't protected speech. Either way, doesn't matter I made this claim two ways:

> the UK will put you in jail for tweets > people in the UK in jail for tweets deemed to be incitement to violence

and there is no question whatsoever that what I said was true. Like it or hate it, I don't care, these are true statements.

Re: The bureaucracy blocking the chance at a cure

#138

Post by mmooss »

Hammershaft wrote: post #135
mmooss wrote: post #20

'Bureaucracy' is commonly used as a trigger word. When I see it, I'm alerted to manipulation and, in some contexts, a certain partisan dogma. After all, who likes bureaucracy? By the same token, who like stop lights or authentication or other structures in life? But every large organization functions using bureaucracy - every highly successful one, every median one, every poor one. > A system originally conceived to…

You're defending a government using force to prevent terminally ill people from voluntarily experimenting on themselves to find a cure and further our understanding of disease. It should not be easier for a layman to design and build a targeted mRNA vaccine then it is to navigate a regulatory maze.

> prevent terminally ill people from voluntarily experimenting on themselves to find a cure and further our understanding of disease

Those seem like a good starting point for standards: Is it voluntary? Are they of sound mind? Are they giving informed consent (to themselves)? Is the experiment likely to yield useful results?

There are many things you can't voluntarily do, such as experimenting with cures that involve opiods. Should we allow vulnerable, uninformed people to take dangerous drugs because they saw a YouTube video saying they would help? Try random gene editing?

The truth is, you probably could do those things and few would care unless you hurt someone else.

> using force

Yes, guns ablazing!

Re: The bureaucracy blocking the chance at a cure

#139

Post by nicofcl »

clcaev wrote: post #107

For those of modest means there is also the "fail first" insurance process where you need to use less expensive therapies before a more appropriate therapy is approved. Each failure can be costly to a patient's health, often exacting irreversible comorbidities, not even considering lost work, family wellbeing, and pain/suffering. For those with rare diseases, insurance also doesn't help with "N of 1" efforts. A case…

[dead]

Re: The bureaucracy blocking the chance at a cure

#140

Post by gzread »

c0balt wrote: post #104
graemep wrote: post #34

Earlier quoted context omitted.

I am not sure about a bulldozer, but in the UK you will be forced to demolish it yourself. I am not sure what the penalty is for failing to do so when ordered to, but it seems to be usually effective.

Likely the same as in most other countries: fines, further orders and eventually criminal prosecution.

when you go before a jury of your peers for having illegal solar panels on your roof, what will they say?
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