A bioethics study published on December 8th calls on crowdfunding platform GoFundMe to ditch campaigns for unproven and unsafe medical procedures.
People turn to GoFundMe for help paying for all sorts of medical interventions. These campaigns have brought in over $650 million since 2010. But a subset of the money raised is spent on unproven and even illegal operations. Unregulated “stem cell therapies,” for example, attract harsh condemnation from the Food and Drug Administration, and Google even banned ads for the procedures. But the public fundraisers still appear on GoFundMe.
In the new paper, published in the peer-reviewed bioethics journal The Hastings Center Report, the authors argue that GoFundMe enables misinformation that enriches bad actors and can harm patients sick with cancer or other serious conditions. Between November 2017 and November 2018, GoFundMe campaigns raised over $5 million for unregulated neurological stem cell procedures, according to a recent study. Those campaigns were shared over 200,000 times on social media.
“They know this is happening. It can’t happen without their involvement,” says Jeremy Snyder, a bioethics researcher at Simon Fraser University and co-author of the report. “I think they should be ashamed of themselves for taking part in it.”
This report comes days after The Washington Post reported that an unregulated stem cell treatment center based in Tampa, Florida, openly coached patients to take out loans and crowdfund thousands of dollars for risky procedures.
it’s absolutely beyond time for them to stop
“I think it’s absolutely beyond time for them to stop,” Snyder says about GoFundMe’s inaction. “And an instance of them running counter to what the rest of the tech sector seems to be doing.”
Tech companies are facing more scrutiny for enabling clinics that push pseudoscience, and major players like Facebook and Google have taken action. Facebook is removing sensational health claims, and Google recently banned predatory ads for unregulated cell therapies. But GoFundMe has yet to act in a comparable way when it comes to similar treatments.
Alison Bateman-House, an assistant professor at New York University’s Langone Health and a bioethics expert who is unaffiliated with the report, says it’s “perfectly reasonable” to bar unproven treatments from fundraising.
Bateman-House is concerned that GoFundMe allows misinformation, suggesting it messes with patients’ abilities to make informed decisions by not policing false medical claims. “We know that most Americans are not medically literate,” she says. “Where there is money to be made, some will prey on the hopes and misunderstandings of others.”
“some will prey on the hopes and misunderstandings of others.”
In response to questions from The Verge, a GoFundMe spokesperson shared a company statement related to its policies on stem cell therapy. The statement says it is “reaching out to experts and medical regulatory authorities” to understand the effect on their customers, but that “ultimately it is up to the GoFundMe community to decide which campaigns to donate to.”
Every campaign on GoFundMe — whether it’s for regulated or unregulated treatments — is an opportunity for the site to make money. When someone donates to a cause, the platform gives donors an option to add a voluntary tip to the company, which defaults to 10 percent.
The paper, written by Snyder and his co-author, Harvard Law professor I. Glenn Cohen, suggests steps GoFundMe may take to upend its “ethical problem.” They concede that expecting the platform to independently evaluate evidence for medical claims would be expensive and difficult. Instead, they propose a “white list approach,” only allowing people to raise money for regulated treatments or those cleared by the FDA for a special program called expanded access.
“There may be some challenges to implementing,” says Patricia Zettler, a law professor formerly with the FDA who is unaffiliated with the report. “But, as they say, we shouldn’t let the perfect be the enemy of the good...these are sensible suggestions.”
Another option the authors propose is to compile a “black list” of egregious procedures. They encourage GoFundMe to partner with organizations like the American Cancer Society to create the lists, in addition to the FDA, which frequently sends warning letters to problematic clinics.
“we need to press these tech companies to act a lot more ethically.”
In fact, some experts say that one way to avoid these crowdfunding issues would be to not only push platforms to act, but also to give bodies like the FDA more power to regulate them. “We’re in a moment right now where there’s a lot of push to deregulate everything,” says Aziza Ahmed, an expert in health law who is not affiliated with the study. “I do think we need to press these tech companies to act a lot more ethically, but at the same time we need to do a better job of beefing up the FDA.”
GoFundMe has banned campaigns in the past. The site removed anti-vaxxers in March, and it banned fundraising for a high-profile and highly controversial German cancer clinic in July. But many controversial treatments — such as LGBTQ conversion therapy and unproven treatments for brain conditions — are not yet prohibited by GoFundMe.
“I think their first step would be to seek ethical advice,” says Cohen. “Crowdsourcing platforms could try white or black list approaches, and either would be superior to the status quo free-for-all.”
Neither Snyder nor Cohen could predict whether their report will lead to change, but Snyder is certain that change is overdue. “I just don’t see that GoFundMe can continue to stick their head in the sand and pretend this isn’t a problem on this platform.”