Should Medical Research Ever Be Crowdfunded?

Should Medical Research Ever Be Crowdfunded?

Should Medical Research Ever Be Crowdfunded?

Since there’s more science happening than could ever be funded by the government, maybe crowdfunding is an important tool to start these things off - Reid Rubsamen, M.D.

   

Should Medical Research Ever Be Crowdfunded?

image by: Alexander Mils

Everyone agrees that medical research is expensive and that there isn't enough government funding to go around. Everyone agrees that AIDS is bad and so a HIV vaccine would be good, particularly one that is given away for free.

But the Immunity Project's attempt to create just such a vaccine has been a cause of much disagreement over the question of whether medical research should ever be crowdfunded. It's a debate that's been raging ever since medical research first popped up on the crowdfunding stage. But because crowdfunding is relatively new territory, that debate isn't all that old. According to The New York Times, it may have started in 2010.

As a July 2011 Times story relates, biologists Jennifer M. Gee and Jennifer D. Calkins were eager to begin collecting data one of the least-studied quail species. But because neither had the principal investigator status requisite to apply through for a National Science Foundation grant, the question was where they would get the money.

It was Calkins who came up with the crowdfunding idea, though not without trepidation. “We were sort of afraid we’d lose some legitimacy in the eyes of other scientists," Gee told the New York Times. "It’s not a peer-reviewed process. [But] I was just ready to do anything it took to do my research."

In November 2010, Calkins and Gee's Kickstarter campaign went live, with a goal of raising $4,853 to cover the pair's travel expenses to the Mexican habitat of the particular quail species, along with costs of food and equipment necessary to conduct their research. Various levels of donation earned backers quail legbands, T-shirts, trading cards, and signed copies of the book the pair planned to produce, among other rewards. The campaign was a success. "I have had to be opportunistic about keeping my research going," Gee told the Times. "I collect data guerrilla style—when and where I can! I think my story is typical.”

While Kickstarter may have been the home of the first home to open-sourced crowdfunding of science, things have changed. Although today the granddaddy of all crowdfunding platforms doesn't explicitly prohibit projects seeking funding for scientific research, their guidelines state that every project must fall into one of the following categories: Art, Comics, Dance, Design, Fashion, Film, Food, Games, Music, Photography, Publishing, Technology, and Theater. This leaves little room for a campaign like Calkins and Gee's, and even less for one like Immunity Project, which sought $462,000 in just 30 days to fund the hard costs of a final blood experiment before moving on to clinical trials of the hoped-for vaccine.

But some scientists feel there should be no room for such campaigns. "It seems like [Immunity Project is] going straight to the public and making appeals to emotion because they don’t have the scientific background to establish themselves in the research community," Emory University virologist Abbie Smith told Nature. "They’re preying on people who are desperate for a vaccine," said Oregon Health and Science University immunologist Louis Picker in the same article. "The concept they’re selling is an old concept that has been shown not to work, and can’t work."

Smith and Picker are among a number of HIV researchers who say Immunity Project's strategy to produce a vaccine—namely, by imbuing those vaccinated the same HIV resistance found naturally in a small segment of the population—is a non-starter.

But not everyone in the HIV-research community impugns Immunity Project's efforts. "They have been more successful than others in captivating attention around social media and using novel fundraising approaches," says Mitchell Warren, executive director of AVAC, a non-profit HIV-prevention advocacy group founded in 1995. "[…] I hope that they don’t discourage people if there is not a licensed vaccine at the end of the day."

Immunity Project co-founder/CEO Reid Rubsamen, M.D., defends his group's crowdfunding efforts as legitimate in a world where government funding is insufficient to support all the avenues of scientific research. "Since there’s more science happening than could ever be funded by the government, maybe crowdfunding is an important tool to start these things off," he says. "It’s a different operating zone for some people, and I’m sure it’s an uncomfortable zone for some people."

While Kickstarter may no longer welcome such efforts, Indiegogo "is available to anyone, anywhere, to raise money for anything," while sites like Experiment and MedStartr are custom-made to facilitate the crowdfunding of scientific research. Immunity Project's campaign was hosted by CrowdTilt, which bills itself as "a new way to pool funds for group experiences, purchases, and causes!"

As Popular Science writer Dan Nosowitz bluntly puts it in his August 2013 article "Is Kickstarter Hostile to Science?": Monsanto doesn't need Kickstarter. Small research teams do. But because there is no link between being good at crowdfunding and being good at science, there is no guarantee that the research-related projects attracting the most funding will be deserving of their success.

Deserving or not, through the good will of 1,463 donors, Immunity Project met its lofty funding goal. "Crowdfunding enables idea of open science and allows us to be very transparent," " says Naveen Jain, Immunity Project's co-founder and chief marketing officer. "We can show people exactly where the money goes and share our results in a very transparent way."

Despite Jain's formulation, with a lack of strong oversight in the crowdfunding world, it's not hard to imagine that bad science may attract good funding. "I worry that the skills necessary to run a successful crowdfunding campaign are orthogonal to the skills needed to make a successful therapy," said Max Hodak, co-founder of biotech company Transcriptic. “You can have people who are bad at science but are good at fundraising in public."

What does that mean for the potential donor eager to put her money to work for the advancement of science? As they might have said in Ancient Rome had crowdfunding been invented two millennia earlier: Caveat donator.


About the Author:

Except for a four-month sojourn in Comoros (a small island nation near the northwest of Madagascar), Greggory Moore has lived his entire life in Southern California.  Currently he resides in Long Beach, CA, where he engages in a variety of activities, including playing in the band MOVE, performing as a member of RIOTstage, and, of course, writing. 

His work has appeared in the Los Angeles Times, OC Weekly, Daily Kos, the Long Beach Post, Random Lengths News, The District Weekly, GreaterLongBeach.com, and a variety of academic and literary journals.  HIs first novel, The Use of Regret, was published in 2011, and he is currently at work on his follow-up.  For more information:  greggorymoore.com

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Last Updated : Monday, September 19, 2022