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. 

“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.”

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. 

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.”

Acting to prevent clinics from misleading patients, Google announced on Friday that it will ban ads for “unproven or experimental” medical procedures.

For several years, the Food and Drug Administration has inched toward cracking down on clinics that offer unproven and unsafe “stem cell therapy.” Scientists have long condemned these clinics for attracting patients with promises not backed by science. The FDA wants these clinics to test their procedures like any new treatment, in rigorous clinical trials, and federal courts have agreed. But these clinics continue to market the unsafe procedures. Experts say this has put vulnerable patients in a bind, exposing them to sketchy salespeople who are peddling hope for thousands of dollars. Now that Google has weighed in, courting patients with dubious claims just got a lot harder.

Normally, before a new treatment can be widely available, it must go through clinical trials to test whether it is effective. These scientific studies establish how safe and effective the treatment is so that duds and dangerous treatments can be left behind. Results are closely monitored by outside researchers and regulators to maintain scientific integrity. The only stem cell procedures that have gone through the clinical trials process and are currently approved by the FDA involve using specific cells from bone marrow or cord blood to treat bone marrow and blood cancers. Google does still allow ads that recruit patients for sanctioned clinical trials in the US.

Rogue stem cell clinics, which bypass the regulatory process, are not new. Hundreds of doctors across the country gladly accept payment for what other doctors and scientists say is just modern snake oil, seeing patients with chronic pain, multiple sclerosis, Parkinson’s, and other hard-to-treat diseases. They tell patients that injecting stem cells into problem areas — whether that’s a joint, vein, or eye — is their “safest” or “best” option. But often, they offer no scientific evidence to back up those claims and very rarely accept insurance. Unlike most FDA-sanctioned clinical trials, patients pay out of pocket and upfront, often spending between $10,000 and $20,000 on treatments.

“It’s heartbreaking. It’s infuriating,” says Jeremy Snyder, a professor at Simon Fraser University who studies the medical exploitation of vulnerable patients.

Leigh Turner, a bioethicist at the University of Minnesota, recalls writing his first letter to the FDA over seven years ago, encouraging it to investigate what he describes as a marketplace in “expansion-mode.”

Turner was shocked by how doctors were endangering patients with clinically unproven uses of patient’s cells, citing clear conflicts with FDA regulations. Stories later surfaced of patients being harmed by stem cell procedures. Patients suffered serious infections, benign tumors, and blindness after their treatments. The FDA ramped up its focus on rogue clinics: first writing new regulations, then harshly worded letters, before moving on to legal action. Going to court to assert that these procedures must pass through clinical trials. But slow-moving legal battles, though many of them are ultimately successful, still haven’t shuttered these expanding businesses. And tech companies have boosted that expansion from the start. 

According to Gayathri Sivakumar, a health communication researcher at Colorado State University who previously worked for Google’s ad and policy teams in India, chronically ill patients often depend on the internet for health information. “Advertisers get what they want… and for Google it’s a good way of making money,” she says. 

Google and Bing ads let clinics market directly to patients seeking help. Even searching phrases like “best alternative treatment for paralysis” returns ads for unproven and potentially dangerous stem cell therapies. Marketing agencies routinely use Google and Facebook to funnel patients into unregulated clinics that are operating without robust evidence. Desperate and sick patients follow these ads hoping for answers and end up making clinics — and Google — richer in the process.

On September 6th, The Washington Post reported that Google plans to pull and prevent ads from stem cell clinics.

According to Google, direct-to-consumer stem cell and cell-based treatments and gene therapies “can lead to dangerous health outcomes and we feel they have no place on our platforms.” The policy will go live in October. 

Google is no stranger to banning ads for predatory businesses. Last year, Google banned ads for addiction treatment centers after a Verge report revealed the ads took advantage of people with deceptive marketing. In May, Google announced it would eliminate misleading ads for anti-abortion clinics.

Experts say this latest move is important given how massive Google is in the online ad space. “This is fantastic news,” says Snyder. While he says Google should be applauded, he adds that it is “heavily responsible” for propping up these clinics in the first place.

Asked about Google’s ban, Turner says that “it seems pretty comprehensive.” He was especially pleased that its policy did not attempt to distinguish between clinics based on the potential risk of treating the conditions they claim to heal. Some conditions, such as joint issues, are less risky to treat than things like neurological disorders. If Google were to try to distinguish between the two, Turner believes it would riddle its policy with loopholes. Google confirmed the policy will not distinguish between different types of unproven uses.

“I was pleasantly surprised when I first heard about it,” says Paul Knoepfler, a stem cell biologist at the University of California at Davis. Knoepfler has tracked this industry for years in academic journals and on his blog. “I also expect the stem cell clinics to fight back. They will try to adapt.”

These experts agree that Google’s move sets a good example. They also agree that vulnerable patients aren’t yet in the clear. Snyder wants to see other tech companies follow suit, and Turner thinks state medical boards should consider disciplinary action against doctors putting patients at risk.

Sivakumar echoed this mix of approval and caution. “Is it a full solution? Not really,” she says. “But it can reduce the negative effects for a short time until they find another way to exploit people.”