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Media often ignore ethical concerns about medical crowdfunding, study finds

“In several of the articles in which unproven therapies were being sought, there was no mention of the possibility of inefficacy or the experimental nature of the intervention,” the researchers said.

A screen shot of the top of the home page of GoFundMe.

Articles in major newspapers about medical crowdfunding campaigns — social-media efforts to solicit donations from family, friends and strangers to help pay for a medical treatment — tend to describe those campaigns in neutral or positive tones, and rarely mention any of the social, ethical or financial concerns that they raise, according to a study published this week in the journal PLOS One.

Many of the articles promote campaigns for unproven, expensive and potentially harmful medical procedures, the study also found.

“This consistently positive media portrayal may impact the public perception of the risks and benefits of crowdfunding and, for better or worse, further legitimize it as a source of funding for medical care,” the study’s authors write.

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Characterizing the campaigns

For the study, researchers at the University of Alberta’s Health Law Institute analyzed a sample of 336 articles about medical crowdfunding published in large English-language newspapers in Canada and the United States between Oct. 7, 2015, and Oct. 6, 2017. Each article was assessed for the tone it used (neutral, positive or negative) when mentioning crowdfunding, either in general or for a specific person.

Most of the articles described the crowdfunding phenomenon neutrally. But the characterizations of specific campaigns were almost evenly divided between being positive (44 percent) and neutral (48 percent). Some articles gave only a passing mention to a crowdfunding campaign, primarily at the end of an article about a person with a particular illness (usually cancer or a rare disease). Yet despite being neutral in tone, those mentions could still be viewed as an implicit endorsement of crowdfunding, say the researchers. Indeed, many of the articles included a hyperlink to a campaign’s online website.

Other articles were more explicitly positive about medical crowdfunding, quoting the patient, family members or friends about its benefits.

Only about 5 percent of the articles analyzed in the study discussed crowdfunding in negative terms. Those articles were mostly stories about fraudulent behavior — people who had lied about being ill or who had otherwise used false information to crowdfund.

Glossing over bogus treatments

The fact that the money raised by a campaign was going to be used for questionable or even bogus treatments did not stop articles from presenting crowdfunding in a positive light.

Seventy of the articles — about one in five — stated that the patient intended to use crowdfunded donations for a treatment that was unproven, experimental, lacking in scientific evidence and/or not approved by regulatory agencies. But most (50) of those articles still told readers where they could contribute, and many (36) also provided a direct hyperlink to the campaign’s online site.

“In several of the articles in which unproven therapies were being sought, there was no mention of the possibility of inefficacy or the experimental nature of the intervention,” the researchers add.

The study offers several passages from the articles to show how they glossed over questionable, unproven treatments:

“[A man with brain cancer] has turned to alternative treatments instead of chemotherapy and radiation to prolong his quality of life, she said. He’s done extensive research and feels confident in them, she added. He’s currently receiving reiki, a Japanese form of energy healing.”

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“Her only chance of survival is treatment in Florida, what doctors call chemo on steroids that kills the Lyme and rebuilds her system. [The patient’s] husband … now administers what treatments he can here at home between visits to Florida because their insurance doesn’t cover the costs.”

“Now she wants to visit a specialist clinic in Germany for treatment as she believes a cocktail of vitamins will help heal her and improve her quality of life.”

Each of those newspaper articles included links to the person’s crowdfunding campaign.

Why it matters

“The lack of cautionary coverage of medical crowdfunding contrasts sharply with its coverage in the academic literature, which includes more discussion of various ethical concerns and inequities,” the researchers write.

Those concerns include “the lack of clarity surrounding who benefits from campaigns, what factors determine how resources are distributed, how access to medical care is affected, and how privacy is affect,” they explain.

Researchers (including Leigh Turner, a bioethicist at the University of Minnesota) have begun to document how bogus, pseudoscientific and sometimes harmful treatments are marketed and legitimized through crowdfunding campaigns, particularly when they receive media attention. The clinics that offer these treatments often encourage patients to launch a crowdfunding campaign to cover the costs of their services.

Another concern is social equity. “The ability to reach an audience of hundreds of thousands of people with a single article almost certainly contributes to stratification of the ‘haves’ and ‘have-nots’ of the crowdfunding world,” the researchers explain. “The higher the article’s popularity, the greater the mutual benefit to both the crowdfunder and the publisher. A ‘popularity contest’ effect can occur, whereby campaign creators attempt to create the most compelling, emotionally appealing narrative possible to attract funding. Consequently, crowdfunding can generate a culture of extreme competiveness.”

That’s not to say that all crowdfunding efforts are ethically questionable or lack merit. But we need to ask questions about the campaign, particularly about the evidence behind the treatments for which the money is being raised. Who will the money be benefitting — the patient or the clinic or company selling the treatment?

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“Crowdfunding is a pathway to granting individuals and families experiencing hardship an opportunity that they might otherwise not have,” the authors of the study write, “but it is also a complex, poorly understood phenomenon that has social, ethical and economic risks and benefits.”

FMI:  You can read the study in full on the PLOS One website.