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ALS Ice Bucket Challenge Donations Lead to Significant Gene Discovery
- foolinaround 10y agoShould the funding of critical discoveries such as this be left to the success of a social media campaign, which may or may not succeed?
- rhaps0dy 10y agoObviously 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.
- nostromo 10y agoI 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.jpg 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.
- cableshaft 10y agoThe 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).
- pcl 10y agoI 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.jpg https://www.dropbox.com/s/rya23mkfihb4ma3/hyU8ohq-reordered....
- finnh 10y agoExcept 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-bucket-challenge http://www.newyorker.com/magazine/2016/07/25/als-and-the-ice...
- J_Darnley 10y agoHeart disease could be cured by spending less money. Less money on food that is. Diabetes too (type 2 at least).
- learc83 10y agoThe 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.
- wry_discontent 10y agoI think it's more about being critical of people who were critical for no reason.
- Karunamon 10y agoThat'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...
- lvs 10y agoNo, 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.
- pizza 10y agoSee: scientists complaining about the effect of funding the Human Genome Project, nearly 30 years ago.
- rarec 10y agoIs it silly if it works?
- lvs 10y agoYes, 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.
- Noseshine 10y agoYour 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"?
- praxulus 10y agoIt 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.
- deleted 10y ago[deleted]
- mcbits 10y ago"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.
- riboflava 10y agoFunding 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"?
- skykooler 10y agoI saw "alsa.org" on a HN post, and expected this to have something to do with sound cards.
- _archon_ 10y agoI've been wondering for some time what the next step is for gene sequencing. Shouldn't someone be working on a 50 year long study where people are brought in at age 20, genes sequenced and dna stored, and an extremely thorough battery of parameters (height, length of each long bone, eye color, etc.) is measured. Tie everything in with medical history. Do the same thing every 10 years for each subject until death. With a large enough sample pool, we'd be able to correlate features with obscure genes, wouldn't we? Am I missing something fundamental? It seems like now is the time to get started.
- ihodes 10y agoYou might be interested in this http://www.sandiegouniontribune.com/news/2016/jul/06/NIH-scripps-topol/ http://www.sandiegouniontribune.com/news/2016/jul/06/NIH-scr...
- seansmith1020 10y agoThe military has databases like this that could lead to a lot of interesting research, in theory. They do DNA testing for body identification purposes as well as tracking long term health through the VA.
- anonred 10y agoHow is that different than sequencing genes from individuals and correlating that to their (fairly detailed) recorded medical history? If I'm not mistaken, that's what's currently being done.
- aylons 10y agoThere's a lot of value on doing this, but GP idea has its value. For starters, there's some survivorship bias, as you cannot map people who have already died. You may also want to gather more detailed data that the medical history usually conveys, such as sub-clinical conditions and other non-pathological differences.
- pizza 10y agoI feel like problem intractability would be a hol' up.. on the other hand I just remembered that 23andMe is sort of attempting this
- wyldfire 10y agoI know we love to rain on social networks as lacking for one reason or another. But taken together I think they're a large part of the success of the fundraising here. Have we seen other global social benefits from social networks?
- manmal 10y agoI guess you could count self-help groups as a huge benefit. Or information distribution within towns/cities.
- ethbro 10y agoOn the other hand of the scale, EHS and TI groups. Which, probably not the most healthy. https://en.m.wikipedia.org/wiki/Electromagnetic_hypersensitivity https://en.m.wikipedia.org/wiki/Electromagnetic_hypersensiti... http://mobile.nytimes.com/2016/06/11/health/gang-stalking-targeted-individuals.html http://mobile.nytimes.com/2016/06/11/health/gang-stalking-ta...
- knowaveragejoe 10y agoAnother example of technology's double-edged nature. I'd add the Internet's burgeoning conspiracy theory community to the list of unhealthy outcomes from social networks.
- dominotw 10y agothey have merely established a correlation. I wouldn't pin my hopes on it.
- Apocryphon 10y agoCrowdfunding and crowdsourcing are often social network based, are they not?
- wmeredith 10y agoTwitter has rather famously been a means of real time communication during times of political turmoil/important current events. See The Arab Spring or the Ferguson, MO protests.
- alfon 10y agoTo anyone suffering from this condition, or that know someone with it, watch this video, doesn't hurt. It saved my life. https://www.youtube.com/watch?v=UY9FdULDV6M https://www.youtube.com/watch?v=UY9FdULDV6M
- Dilan 10y agoMy brother was recently diagnosed with ALS. Is there anyway I can get in touch with you to have a chat about that video?
- Mz 10y agoUnderstanding NEK1’s role in disease will provide an important new target for therapy development. I hope that means they will use it to try to map the pathology of the condition and not just develop gene specific drugs. I do not know why this is being downvoted, but developing expensive drugs without really making progress on understanding the pathology is something they have done with other disorders. Money before patient care. And it is a sucky practice.
- dominotw 10y ago23andme has not yielded a single significant correlation so far. What makes this particular correlation significant? .
- maxerickson 10y agoThis is the announcement of a correlation. The question would be whether knowledge of the gene is useful in dealing with the disease. The difference is probably that they sequenced full genomes, whereas 23andme (mostly?) looks at known genes.
- dominotw 10y agosorry, emphasis on significant . 23andme has tons of correlation data but all of it is useless garbage.
- zeddie 10y ago23andMe has contributed to the science described in several dozen articles published in the top journals: https://www.23andme.com/for/scientists/ https://www.23andme.com/for/scientists/. Is all of that useless garbage?
- dominotw 10y agoI am no way qualified to interpret or make any sense those. 23andme has been in existence for over a decade, sure these papers might be great but have they led to anything tangible that a ordinary person like me can benefit from ? I am genuinely curious, i really want to know. I've been a subscriber for over 7 yrs and have gotten all the upgrades they offered over the years. I am yet to get a single useful peice of data out of it. All my extended family has it too and none of them have gotten anything out of it other than of entertainment value. If they have made significant breakthroughs why I am as a consumer not seeing any benefits in over a decade.
- dekhn 10y ago
- marknutter 10y agoWe did it!
- dekhn 10y agoInteresting that the gene "discovery" is really just making an association. The gene itself was discovered a long time ago (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC556810/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC556810/), and associated with other negative outcomes. Like many that are involved in diseases, the gene appears to be activated in response to DNA damage.
- JangoSteve 10y agoYep, that's what pretty much all genomic discoveries are these days. Since the Human Genome Project [1], which set out to map all genes in the human genome, was considered complete in 2003, most studies these days seek to find the correlations between genetic mutations and diseases. [1] https://en.m.wikipedia.org/wiki/Human_Genome_Project https://en.m.wikipedia.org/wiki/Human_Genome_Project
- dekhn 10y agoit's kind of amazing that woese managed to discover a whole kingdom of life with just a few RNAs and the best we can do with thousands of genomes is make weak associations.
- iamed2 10y agoConstructing a narrative around the usage of donations has been something scientific/medical charities have struggled with in comparison with foreign aid charities like World Vision. This article is a smart move for them.
- jordyjordy 10y agoneed a hacker for all forms of hack? Contact guruleads hackers today via email demonteco@yahoo.com
- cmdrfred 10y agoLet's say this discovery leads to a drug/treatment for the disease. What happens to it? Does a company get to patent it and then sell it back to the people who paid for the research (with donations)? Does it become public domain? This ambiguity has prevented me from donating to similar causes in the past.
- bacongobbler 10y agoThe end result is what matters for most people, not the politics. Discovering a cure for ALS would be an amazing medical feat. To answer your question, the ALS association raises public awareness about ALS, provides care services to ALS patients and distributes funding to research projects on ALS. The politics to when one of these research facilities discover a cure for ALS is up to them. They are just receiving grants from the ALS Association.
- cmdrfred 10y agoSo it is as I suspected. That may work for some people, but I won't personally donate to any "for a cure" causes. My money's better spent elsewhere.
- starky 10y agoThere are many ALS organizations, some larger than others. They all typically split their money between support and research, but a local ALS chapter will have a larger focus on providing support and equipment for people with the disease in the area. ALSA got most of the support from the ice bucket challenge, and their focus will be more on research as a national charity, but local ALS chapters do a ton for a rapidly changing and expensive disease.
- cmdrfred 10y agoSo it's less about a cure and more about patient services? If it was more advertised that way I'd chip in. I find some "charities" suspect for medical bills. I do some work for an oncology practice and heard a few of the doctors talking about the "charity" they set up. Basicly they find a patient that would never be able to pay the bills that are owed (IE. Patient has no assets, is 90 years old, and owes 200k on a fixed income) and forgives that debt via charitable donations. "It's a way to get paid for things you would not be otherwise" were the exact words I believe. They have nice little pamphlets that talk about "Give the gift of honor". I find it rather despicable how they use the emotions of relatives of those who have passed on to pad their bottom line.
- nonbel 10y agoI wish I didn't have to say this, but: Statistical significance != Success We will have to wait a decade to find out if this was actually a significant development that should be counted as a success.
- sdoering 10y agoAnd to add to this, we cannot know, if the funding wouldn't have happened non the less if IBC didn't happen. And also to quote from the article: "NEK1 was discovered through a genome-wide search for ALS risk genes in over 1,000 ALS families, and was independently found through different means in an isolated population in The Netherlands. " So they already knew about the gene and in time would have found out more on it non the less. So the influence of the IBC seems less and less important, while reading the piece. Sad isn't it?
- nonbel 10y agoMedical research has been taken over by this type of hype. It infests the journal articles as well (although the hype there is usually more sophisticated). The signal to noise ratio is very low right now.
- nipponese 10y agoI remain skeptical. Tax records show the Ice Bucket Challenge was extremely profitable to organizers of the non-profit, so there is significant incentive to keep the PR machine going.
- naraga 10y agoThere's nothing wrong on making money even in this space: http://www.ted.com/talks/dan_pallotta_the_way_we_think_about_charity_is_dead_wrong http://www.ted.com/talks/dan_pallotta_the_way_we_think_about...
- nipponese 10y agoMaybe it's just scruples or a mis-understanding of charities, but earning financial gain in the name of altruism seems morally bankrupt.
- jypepin 10y agoBeing able to get a follow up on those donations will help a lot driving donations in the future. Being able to get a followup and really know what your money is used for, and get confirmed that your money has actually contributed to something significant is incredibly valuable and not enough organizations do it. That's what helped a lot charity:water, which not only promised to use 100% of the fund to build actual wells in africa, it would tell you exactly which well would get built with your money, where, and then send you a picture of the well. That's great to see that the whole ice bucket challenge actually helped the cause.
- cmtcosta 10y agosomeone disagrees: https://boingboing.net/2016/07/28/the-ice-bucket-challenge-did-n.html https://boingboing.net/2016/07/28/the-ice-bucket-challenge-d...
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