Warning over crowdsourced stem cell schemes

Just as Dr Google has changed how patients and their families access information about healthcare options, online crowdfunding platforms such as GoFundMe and YouCaring are providing new ways to seek financial support to cover out-of-pocket medical expenses.

While these platforms can enable some patients to access established medicines or care that they would otherwise be unable to afford, a recent report in the Journal of the American Medical Association (JAMA) highlights how crowdsourcing campaigns are also being undertaken to raise funds for unproven interventions such as ‘stem cell’ treatments.

While progress in being made to develop new therapies, proven stem cell-based treatments are limited to diseases of the blood and immune system, such as leukaemia, and skin and eye surgeries where grafts are used to restore damaged surfaces. All other stem cell-based applications are considered experimental and require long-term evaluation in clinical trials to determine whether they are safe and that they work.

For many years organisations such as the International Society for Stem Cell Research and the International Society for Cellular Therapy have raised concerns about the growing number of commercial stem cell clinics using unsubstantiated claims of benefit to promote their costly services online.

Operating outside the bounds of conventional medicine, these businesses often use patient testimonials and unsubstantiated claims of success – rather than recognised scientific evidence – to justify their claims. For those seeking a way to alleviate their suffering, or that of their loved one, the online portrayals of hope by these stem cell clinics can be hard to ignore. 

In this new report Jeremy Snyder, from Simon Fraser University in British Columbia, Canada, and colleagues illustrate how crowdsourcing may also be contributing to a misunderstanding about how and when stem cells can help. The researchers examined 408 crowdsourcing campaigns that sought to help patients access “stem cell treatments” sold by commercial businesses based in the US. They found that the majority of campaigns underemphasised risks and exaggerated the likely benefit of the interventions, providing a potentially misleading message that echoed many of the claims found in the direct-to-consumer marketing of these for-profit companies.

Crowdsourcing has the power to unite communities and provide much-needed financial support for those in need. Personal donations are ways of showing care and love through investing in the future health of those suffering. But equally, as the authors of this study illustrate, such online platforms can also promulgate misinformation and fuel hopes of benefit that in reality science can’t yet sustain.

The message of high benefit and low risk misrepresents the lived reality for many who pursue such treatments. Three women recently lost their sight after suffering detached retinas following injection of what were claimed to be stem cells from their fat into the back of their eyes in an effort to treat their macular degeneration.

One of the women had reportedly used an online fundraising site to raise the funds for the “treatment” that left her permanently blind.

Online crowdsourcing platforms are legitimising interventions that are sold by commercial businesses – based on hope and anecdote, not evidence. Through crowdsourcing the reach of these for-profit businesses is going well beyond those directly seeking treatment and into the pockets of well-meaning but misinformed communities.

Questions need to continue to be asked about how business, particularly those offering a medical intervention, can operate on such false pretences. Regulators such as the US Food and Drug Administration who recently took steps to close two of the US clinics offering unproven interventions need to be applauded.

Online crowdsourcing can potentially amplify a false message about access to beneficial stem cell treatments, diverting patients from other forms of evidence-based care. Raising awareness of this is critical to avoid the unwitting exploitation of not only those seeking treatment, but those generous donors investing in their healthcare.

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Associate Professor Megan Munsie and Dr Claire Tanner are researchers based at the Centre for Stem Cell Systems at the University of Melbourne. Megan Munsie also heads the Policy and Engagement Unit at the ARC funded Stem Cells Australia initiative.