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by jonlucc 4283 days ago
Worse, I fear that cancer patients and their loved ones will get overly enthusiastic about this. Then, when they donate tons of money and it fails, they are out money, time, and a drug. This is the reason pharmaceutical companies are cautious about contacting patient advocacy groups.
2 comments

Good point. This is something i wrestled with. It's very likely this will fail (for both social and scientific reasons). At the very least though if it fails for scientific reasons, since experiments will be openly disclosed (unlike the siloed process at pharma r&d) - we will learn something - even if that something is "don't try making this drug again".
If I am donating to a charity which funnels money to research, how is this all that different? I think you can tap into a similar set of population and motivations for the donations. One of the upsides with this sort of approach is that you have a great opportunity to involve the donors in the overall process. The experiment can be used to provide a view into the nitty gritty of the scientific process and more specifically drug research. Of course to do this well will take a significant effort to communicate everything effectively. On the other hand, as you mentioned, you don't want to create false hope. To mitigate this you would want to work on managing expectations on the potential results and consequences of those results are. Either way you should be able to gather useful information/experience on both the scientific experiment and the social experiment.
I would like to think that the existing funding of research has mechanisms in place to fund the "best" types of research, which makes me ask why the need for crowd funding? It sounds cool initially but having seen some nonsense that was crowd funded I am not so sure.

http://physics.stackexchange.com/questions/39456/the-z-torqu...

The article talks about the research being patent free, but surely there are options available to fund research that allow this, or am I wrong?

You can't really blame them, Kickstarter is composed of artists, not scientists.