The Intersection of Kickstarter-Style Fundraising for Research and Distributed Development in Complex Problems

Posted: August 4, 2013 at 2:57 am

The success of Kickstarter and conceptually similar entities (IndieGoGo, AngelList, and so forth) as fundraising communities has more than adequately demonstrated that crowdfunding works very well in an environment of low-cost, ubiquitous communication and open data. All the old centralized time-proven activities of fundraising in for-profit business can in fact be distributed, turned inside out, and disintermediated. New middle men arise in this process of disruptive change, such as Kickstarter, but the future will see their dominance vanish in favor of open protocols and marketplaces with some sort of an ecosystem of optional gatekeepers and reviewers. This is exactly the same as the transition from early dial-up services and their walled gardens to the open internet, and seems to be something of an inevitability.

Can this be made to work for science and research? Therein lies the question. At the high level, it seems as though the answer is obviously yes: it's all just money, and money is presently invested in research. But at the detail level research is a very different thing from funding a new artwork or widget: it has a much longer time horizon, a far greater degree of uncertainty, and the funders don't walk away at the end with a new widget. A number of companies are presently attempting to find the magic recipe by which crowsourced science funding can be made work in a Kickstarter-like fashion.

Clearly crowdfunding for specific research goals is possible. There are numerous examples of success in the past decade beyond those I'll mention here. The Methuselah Foundation and SENS Research Foundation grew out of crowdfunding initiatives, raising money from hundreds of donors from the transhumanist community and other supporters of longevity science. The advocacy community of Longecity raises modest sums for specific life science research projects connected to longevity and related medical technologies. But these are tailored projects, integrated with specific interest communities: not the same thing at all as building a successful marketplace for diverse forms of project and community.

Crowdfunding intersects with another important trend that arises with ubiquitous, low-cost communication and openly accessible data, which is the distribution of effort in large projects. Complex initiatives can now be undertaken piecemeal by geographically dispersed groups who share a common interest. The open source software development community is far ahead of the rest of the world in this respect: many vital and important software projects have evolved in a worldwide fashion, with self-organizing collaborators who will never meet in person. Science is moving in the same direction: lots of data, lots of complex software, data becoming more open, and more distributed collaboration between researchers in different parts of the world.

What medical science has that the software industry does not is a vast and pervasive edifice of regulation, wherein largely unaccountable regulators insist on centralization and the imposition of enormous costs on research and its application in the form of new therapies and medical technologies. Regulation opposes movement to a more distributed research and development industry in which even exceedingly rare diseases will be worked on by someone, somewhere with a vested interest. Higher costs always mean that marginal work suffers, vanishes entirely, or takes place in black and grey markets with all their attendant issues. It is enormously harmful, and that harm is largely invisible: the technologies not developed, the progress not made, the dead in their millions who might have had a chance at longer lives.

The article quoted below offers some thoughts on all of this in the context of cancer research and proto-crowdfunding efforts that have aimed to spur research and development in therapies for very rare forms of cancers, those that present regulation makes it unprofitable to work on. The points raised are also applicable to the situation for aging and rejuvenation research, however, which is also a collection of related minority fields that are shut out from clinical application by the decisions of regulators.

Can We Build A Kickstarter For Cancer?

Building large analytical databases to mine clinical and molecular data, and scan the scientific literature to identify better treatments for cancer patients is happening today. But what about patients who fall outside what we already know - whose cancer subtypes haven't been discovered yet, and who don't have access to the technologies that could make a difference in unraveling the aberrations driving their cancers? The technology to unravel the molecular drivers of cancer is, for the most part, available today: "-omics" technologies for screening tumor samples from patients and comparing them to healthy tissue samples to pick out cancer-specific mutations; diagnostics that can track patients' response to treatment in real time at a molecular level; and Web-based tools and apps [that] patients and community oncologists can use to guide treatment decisions (and feed those outcomes, good and bad, back into the research process).

Our current research approach - one drug, one clinical trial, one cancer type at a time - won't generate enough of the information we need to unravel cancer's molecular mysteries at the patient level. And it is too slow, too bureaucratic, and too expensive to be sustainable, given the number of compounds we have to test and the limited pool of patients who participate in clinical trials. Only about 3% of all cancer patients participate in cancer clinical trials, and those patients - because of restrictive inclusion/exclusion criteria - are often very different (i.e., healthier) than the average cancer patient, who is likely to be in poorer health and have one or more co-morbidities (obesity, diabetes, etc.). This limits the applicability of even the best drug guidelines based on classical trials for real-world patients. Classical clinical trials lead to a "tyranny of the averages," rather than helping us to - as in the case of cancer - disassemble complex diseases that might share the same clinical symptoms (and which we happen to call cancer or diabetes) but which are really molecularly distinct and thus require different treatment approaches.

In short, we won't develop the drugs or complex treatment regimens we need to for truly personalized cancer treatment regimens for patients if we keep doing business as usual. The patients who have the most to gain from this approach are those who have the most to lose today - patients with rare or hard-to-treat cancers, who fail rapidly on standard or even targeted treatments. And it's exactly these patients who will, in all likelihood, be most eager to embrace the risks and promise of Kickstarting their own cancer research.

It's not just cancer: all of modern medicine would benefit from an overturning of the present centralized regulatory structures in order to allow unfettered diversity in fundraising, research, and clinical application. This is exactly the sort of approach that modern communication technologies enable: let there be far more in the way of researchers connecting to the interested small communities among the broader public - as was the case for the Strategies for Engineered Negligible Senescence - and the best of these initiatives, those that manage to obtain support from both the public and the scientific community, will prosper. This, I think, is a far more promising model for the future of research than the stasis, obstructions, and failures of highly regulated, state-funded scientific and medical monoliths.

Source:
https://www.fightaging.org/archives/2013/08/the-intersection-of-kickstarter-style-fundraising-for-research-and-distributed-development-in-complex-problems.php

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