Skip to main content

Bioethics experts call on GoFundMe to ban unproven medical treatments

Bioethics experts call on GoFundMe to ban unproven medical treatments

/

Authors worry about the spread of medical misinformation

Share this story

hospital doctor
Photo by Monika Skolimowska / Picture Alliance via Getty Images

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.”

Today’s Storystream

Feed refreshed Sep 24 Striking out

E
External Link
Emma RothSep 24
California Governor Gavin Newsom vetoes the state’s “BitLicense” law.

The bill, called the Digital Financial Assets Law, would establish a regulatory framework for companies that transact with cryptocurrency in the state, similar to New York’s BitLicense system. In a statement, Newsom says it’s “premature to lock a licensing structure” and that implementing such a program is a “costly undertaking:”

A more flexible approach is needed to ensure regulatory oversight can keep up with rapidly evolving technology and use cases, and is tailored with the proper tools to address trends and mitigate consumer harm.


A
Youtube
Andrew WebsterSep 24
Look at this Thing.

At its Tudum event today, Netflix showed off a new clip from the Tim Burton series Wednesday, which focused on a very important character: the sentient hand known as Thing. The full series starts streaming on November 23rd.


A
The Verge
Andrew WebsterSep 24
Get ready for some Netflix news.

At 1PM ET today Netflix is streaming its second annual Tudum event, where you can expect to hear news about and see trailers from its biggest franchises, including The Witcher and Bridgerton. I’ll be covering the event live alongside my colleague Charles Pulliam-Moore, and you can also watch along at the link below. There will be lots of expected names during the stream, but I have my fingers crossed for a new season of Hemlock Grove.


A
Andrew WebsterSep 24
Looking for something to do this weekend?

Why not hang out on the couch playing video games and watching TV. It’s a good time for it, with intriguing recent releases like Return to Monkey Island, Session: Skate Sim, and the Star Wars spinoff Andor. Or you could check out some of the new anime on Netflix, including Thermae Romae Novae (pictured below), which is my personal favorite time-traveling story about bathing.


A screenshot from the Netflix anime Thermae Romae Novae.
Thermae Romae Novae.
Image: Netflix
J
Twitter
Jay PetersSep 23
Twitch’s creators SVP is leaving the company.

Constance Knight, Twitch’s senior vice president of global creators, is leaving for a new opportunity, according to Bloomberg’s Cecilia D’Anastasio. Knight shared her departure with staff on the same day Twitch announced impending cuts to how much its biggest streamers will earn from subscriptions.


T
Twitter
Tom WarrenSep 23
Has the Windows 11 2022 Update made your gaming PC stutter?

Nvidia GPU owners have been complaining of stuttering and poor frame rates with the latest Windows 11 update, but thankfully there’s a fix. Nvidia has identified an issue with its GeForce Experience overlay and the Windows 11 2022 Update (22H2). A fix is available in beta from Nvidia’s website.


A
External Link
If you’re using crash detection on the iPhone 14, invest in a really good phone mount.

Motorcycle owner Douglas Sonders has a cautionary tale in Jalopnik today about the iPhone 14’s new crash detection feature. He was riding his LiveWire One motorcycle down the West Side Highway at about 60 mph when he hit a bump, causing his iPhone 14 Pro Max to fly off its handlebar mount. Soon after, his girlfriend and parents received text messages that he had been in a horrible accident, causing several hours of panic. The phone even called the police, all because it fell off the handlebars. All thanks to crash detection.

Riding a motorcycle is very dangerous, and the last thing anyone needs is to think their loved one was in a horrible crash when they weren’t. This is obviously an edge case, but it makes me wonder what other sort of false positives we see as more phones adopt this technology.


A
External Link
Ford is running out of its own Blue Oval badges.

Running out of semiconductors is one thing, but running out of your own iconic nameplates is just downright brutal. The Wall Street Journal reports badge and nameplate shortages are impacting the automaker's popular F-series pickup lineup, delaying deliveries and causing general chaos.

Some executives are even proposing a 3D printing workaround, but they didn’t feel like the substitutes would clear the bar. All in all, it's been a dreadful summer of supply chain setbacks for Ford, leading the company to reorganize its org chart to bring some sort of relief.