Medical Crowdfunding for Scientifically Unsupported or Potentially Dangerous Treatments

Vox, Ford; Folkers, Kelly McBride; Turi, Angela; Caplan, Arthur L.

doi:10.1001/jama.2018.10264

Cited by 46 publications

(45 citation statements)

References 5 publications

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“…This is at a time when crowdfunding for science has become more attractive for younger researchers in academic institutions. More than 1,000 medical crowdfunding campaigns for 5 treatments that are unsupported by evidence or are potentially unsafe have raised more than $6.7 million [96]. While 408 campaigns raised more than $1 million for unproven stem cell interventions [58].…”

Section: Resultsmentioning

confidence: 99%

The pitfalls of crowdfunding Alzheimer's disease research

Garrett¹

2019

Int Med

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With pharmaceutical companies' repeated failures at finding effective interventions for Alzheimer's disease, together with an increasing reliance on the growing federal funding for research, there is an emergent opportunity for financing alternate research through crowdfunding. Crowdfunding-where funding is obtained from small donations from a large group of people-has become a new source of funding for medical research. By understanding how the research community has evolved to study Alzheimer's disease the pitfalls of this strategy can be highlighted. Alzheimer's disease research is complex. From its inception in the early 1900s, Alzheimer's disease has been at the center of movement within psychiatry to define the disease on the basis of its biology. Recent emphasisthrough the DSM (Diagnostic and Statistical Manual of Mental Disorders), RDC (Research Diagnostic Criteria), RDoC (Research Domain Criteria) as well as the more recent Framework from the U.S. National Institute on Aging-have supported an exclusive emphasis on biology. But by excluding other aspects of the disease, such as its clinical expression, this research approach will be shown to be faulty and contradictory. So far, this approach has resulted in 100% failures. By examining the historical and financial circumstances of the industry centered on Alzheimer's disease a strong warning is given to the public to mistrust crowdfunding Alzheimer's disease research. A broader and more inclusive approach is likely to generate a better understanding of the disease and therefore hold better promise for understanding the disease in the long term. Such a nuanced approach competes badly with the more binary search for a cure and is less receptive to public support through crowdfunding.

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Section: Resultsmentioning

confidence: 99%

The pitfalls of crowdfunding Alzheimer's disease research

Garrett¹

2019

Int Med

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“…In one study, some interviewees had initiated crowdfunding because they did not have health insurance; others had insurance, but it did not cover certain types of care (Gonzales, Kwon, Lynch, & Fritz, 2016). Another study found that 1,000 campaigns in the US and Canada had raised a total of $6 million for experimental or scientifically controversial treatments that were unlikely to be covered by formal health insurers (Vox, Folkers, Turi, & Caplan, 2018). Potential donors also actively sought information about fundraisers' medical situations (e.g., illness and treatments) and alternative funding sources (e.g., public and private insurance coverage) to decide whether to donate (Kim et al, 2016).…”

Section: Figure I Pathways Of Financing Healthcare For Householdsmentioning

confidence: 99%

New Digital Safety Net or Just More ‘Friendfunding’? Institutional Analysis of Medical Crowdfunding in the United States

Lee

Lehdonvirta

2020

SSRN Journal

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Crowdfunding is becoming a popular way of financing healthcare. Some commentators suggest that crowdfunding could serve as a new institution that fills gaps in conventional safety nets. Others suggest that crowdfunding is simply another way of obtaining help from family, friends, and local associations, and has little transformative potential. We provide one of the first quantitative analyses of medical crowdfunding, and the first to model the broader societal context in which campaigns are situated. We scraped data on US medical campaigns from the leading platform, and combined them with county-level socioeconomic data to model predictors of campaign frequency and success. Our findings suggest that many seek help from crowdfunding when both formal and informal conventional safety nets fail them. Significantly more campaigns are initiated in US counties with poorer private insurance coverage, lower social security provision, fewer social associations, and weaker cultures of giving. However, campaigns are least likely to reach their goals where most needed. Campaigns are more likely to be successful in counties that are wealthier and healthier, and have more social associations. Crowdfunding is not merely 'friendfunding': fundraisers can increase their chances of success by having their appeals widely shared on social media. However, the returns to sharing are greater for campaigns initiated in wealthier areas. Overall, our findings suggest that medical crowdfunding is an entrepreneurial safety net: one where protection is not afforded universally or on the basis of need, but on the basis of one's ability to appeal to the audience and outcompete rivaling needfuls.

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“…Recent studies have shown that many individuals are using crowdfunding to finance access to scientifically unsupported medical treatments. One search of GoFundMe campaigns identified 1,059 campaigns for unproven and potentially dangerous medical interventions, including homeopathy or naturopathy for cancer (n = 474), hyperbaric oxygen for brain injury (n = 190), stem cells for brain and spinal cord injuries (n = 281), and long‐term antibiotics for chronic Lyme disease (n = 114) . Other studies have identified campaigns for unproven stem cell interventions for a variety of medical needs …”

Section: Articlementioning

confidence: 99%

“…One search of GoFundMe campaigns identified 1,059 campaigns for unproven and potentially dangerous medical interventions, including homeopathy or naturopathy for cancer (n = 474), hyperbaric oxygen for brain injury (n = 190), stem cells for brain and spinal cord injuries (n = 281), and long-term antibiotics for chronic Lyme disease (n = 114). 4 Other studies have identified campaigns for unproven stem cell interventions for a variety of medical needs. 5 Recently, GoFundMe prohibited campaigns for antivaccination groups on the grounds that they "promote misinformation about vaccines" and for treatment at a German clinic offering unproven cancer treatments due to "the need to make sure people are equipped to make well-informed decisions."…”

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confidence: 99%

Medical Crowdfunding for Unproven Medical Treatments: Should Gofundme Become a Gatekeeper?

Snyder¹,

Cohen²

2019

Hastings Center Report

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Medical crowdfunding has raised many ethical concerns, among them that it may undermine privacy, widen health inequities, and commodify health care. One motivation for medical crowdfunding has received particular attention among ethicists. Recent studies have shown that many individuals are using crowdfunding to finance access to scientifically unsupported medical treatments. Recently, GoFundMe prohibited campaigns for antivaccination groups on the grounds that they “promote misinformation about vaccines” and for treatment at a German clinic offering unproven cancer treatments due to “the need to make sure people are equipped to make well‐informed decisions.” GoFundMe has not taken any additional actions to regulate the much larger presence of campaigns seeking to fund unproven medical interventions on the platform. In this article, we make the ethical case for intervention by GoFundMe and other crowdfunding platforms.

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Medical Crowdfunding for Scientifically Unsupported or Potentially Dangerous Treatments

Cited by 46 publications

References 5 publications

The pitfalls of crowdfunding Alzheimer's disease research

The pitfalls of crowdfunding Alzheimer's disease research

New Digital Safety Net or Just More ‘Friendfunding’? Institutional Analysis of Medical Crowdfunding in the United States

Medical Crowdfunding for Unproven Medical Treatments: Should Gofundme Become a Gatekeeper?

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