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Comment by foolinaround | Hacker News Reader

Should the funding of critical discoveries such as this be left to the success of a social media campaign, which may or may not succeed?

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Obviously yes, if the alternative is no campaign and no funding at all.

A chance reasonably larger than zero is better than a chance very close to zero.

I think that OP raises a fair point, regardless of the downvotes.

Susan Komen, the Ice Bucket Challenge, and Movember raise a ton of money that could be used for more common and deadly diseases.

http://andrewgelman.com/wp-content/uploads/2014/08/hyU8ohq.j...

Yes, I'm happy that there has been an advance for ALS, but if you take a step back, it does appear that there may be a misattribution of limited research dollars.

The money could have been donated to more common diseases, but probably wouldn't have. Humans are mostly motivated by emotion. The Ice Bucket Challenge captured the imagination of a ton of people and got them motivated to donate. If other common diseases need more money, they should find similar ways to pull at human's heartstrings (obviously they do as well, just not with such a public feelgood novel viral stunt like this).

I moved that image around to sort by mortality in both columns. Somehow it makes more sense to me this way.

https://www.dropbox.com/s/rya23mkfihb4ma3/hyU8ohq-reordered....

Except that the Ice Bucket Challenge did not misappropriate research dollars. They created new research dollars out of thin air. There is not much reason to believe that the people who donated in response to the Ice Bucket Challenge would have otherwise donated those same dollars to some other, more common disease.

As usual, Surowiecki does a great job:

http://www.newyorker.com/magazine/2016/07/25/als-and-the-ice...

Heart disease could be cured by spending less money. Less money on food that is. Diabetes too (type 2 at least).

The question was should we leave funding to internet campaigns, not will we. I can't imagine the OP is arguing that the ALS association shouldn't take the money or that people shouldn't donate. The OP is arguing that they shouldn't have to rely on these kinds of campaigns to solve large problems like this because we should increase public research funding.

That's a... very upside-down way of looking at it. The alternative is that those funds would not have been received at all.

Normally, large amounts of people donating to a good cause is seen as a universal positive...

No, the upside down part of it is that our systemic mechanisms for research funding are so limited compared to the scale of the problems we face as a species that we need to fall back on silly internet campaigns to fund this work.

See: scientists complaining about the effect of funding the Human Genome Project, nearly 30 years ago.

Is it silly if it works?

Yes, of course it's silly as a funding mechanism. What happens with the money downstream is independent of how it was obtained. The point is that science should not have to resort to this kind of thing in a society that appropriately places knowledge as a coordinated priority.

Your definition of "it works" seems to be circular, based on "what we've got works - otherwise we would not be here". IT doesn't look like you thought about alternatives. "It did something positive (at all, this time)" (and let's ignore the bigger picture altogether) = "it works"?

It could plausibly be used as en excuse to cut public funding (e.g. "Look how successful private donations are!").

I don't think that's a big enough problem to dismiss the next iteration of the ice bucket challenge, but it's worth considering.

On the contrary, the raised awareness seems to have increased the public funding. Both houses of Congress passed extra millions of funding just this month.

I think it's more about being critical of people who were critical for no reason.

Funding should be left to wherever it can come from. If you try to get a single X to fund everything, X will quickly become bankrupt.

If that's not your point, that funding should only come from a certain X, then is your point the even more absurd remark analogous to saying after the discovery of Penicillin by Fleming "should such critical advances be left to serendipity and solo poor communicators who may never discover anything"?

"May or may not succeed" applies to the research itself, regardless of how it is funded. I imagine the subtext of your comment is that ALS (or gene sequencing?) should receive more public funding, but they both already receive a lot of public funding. It's the overall sustained effort in medical research that leads to results, for ALS this time and maybe for something else next time.

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