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Comment by panabee

12 hours ago

TLDR: gatekeepers stifled exploration and innovation.

When a topic only has a limited number of experts, those experts become gatekeepers.

Those gatekeepers directly or indirectly control research funding.

Gatekeepers necessarily harbor biases, some right and some wrong, about how the field should progress.

For Alzheimer's, some gatekeepers were conflicted and potentially directed the field in the wrong direction. Only time will reveal AB42's true role.

It's easy to find fault in Alzheimer's.

It's harder to see the general solution to the gatekeeper problem, i.e., how to allocate resources in areas with limited experts.

> gatekeepers directly or indirectly control research funding.

Perhaps funding like public grants could be controlled by few? Should not the case for private money?

Relatively common health issues older people tend to get fair amount of private funding after all.

Rich people tend to be older and they are lot more likely to see amongst their friends and family Alzheimer's and Parkison's or even cancer and so forth and be worried about it and thus donate money to them.

In somewhat related (i.e. old people health concerns) life extension research gets all kinds of wacky non traditional research lines get funded all the time, I don't understand why would Alzheimer's would be any different.

  • If you're a wealthy person lacking a neurobiology background, how do you decide which research efforts are the most promising? Which labs do you back?

    Generally, you rely on experts.

    Who typically became experts by adhering to the conventional wisdom set by gatekeepers.

    "Science advances one funeral at a time" feels apt.

    Sadly, the problem isn't confined to Alzheimer's.

    Whenever only a few people decide what is "right," the same pattern of stifled innovation will generally manifest itself not by design or from malice, but because it's hard for a small group to be 100% right on what works and what doesn't -- especially on matters as inscrutable as neuroimmune diseases.

    • I don't think the problem is nearly as big as people claim. Experts are often right!

      While there are counter examples and inefficiencies in the system (and there are idea of addressing this, by distributing some part of the money in other ways), we have far bigger societal issues because people do not believe in science, especially where there is an industry lobby sowing doubts.

      So I really want to push back against the the idea that the scientific system is broken. While there are real issues, this is still very misleading.

    • What also happens is these gatekeepers end up being those requested to review papers. When a paper comes up for review that challenges the status quo these gatekeepers nit-pick the paper and recommend it not be published. This happened to my wife on numerous occasions. She has a few unpublished papers because of this. What she found in her research has since become the common accepted knowledge in her field after a few funerals.

  • Life extension seems like the kind of thing that can get private funding with relative ease specifically because they aren't trying to compete with the government. There are a lot of private foundations that give out grants too though.

In most engineering fields we don't give the monopoly to people until they have actually demonstrated success beyond a reasonable doubt. There will always be groups of people claiming that the math/methods they happen to know are the best at explaining some behavior (even now there is that learning mechanics paper on top page)

The takeaway is to stop pretending that we can do good science when the ambiguity is so high, the majority of funding should go to people working on more concrete problems. We never locked in on vacuum tubes because the downsides were so obvious and the upsides of silicon transistors (if they could be made to work) were also obvious even to people outside the field, where your talent comes from. At the very least funders can't allow shifting goalposts, make them up front answer questions about the drugs. That will give you something to estimate the value of the drug and then when they come back with study after study outside the ranges they gave, you lower their funding. E.g. This is supposed to work on someone who was stage 2 and stop progression and then 5 years later it only "works" for stage 1 patients.

Strange breakthrough ideas can't even exist in the current system structurally, so going this route is the only logical choice. Which begs the question, why aren't clinical trials a private venture already? Governments are burning billions of taxpayer dollars for either nothing or cynically to keep the boomers alive and voting even longer, while 1/5 children are obese. For the rest of us we've socialized the risk and privatized the profits.