Crowdfunding used to pay for unproven stem cell therapies
Dr Claire Tanner and Associate Professor Megan Munsie investigate the growing trend of crowdfunding for unproven stem cell-based treatments.
Online crowdfunding platforms are changing how people finance their out-of-pocket medical expenses. Dr Claire Tanner and Associate Professor Megan Munsie from the Centre for Stem Cell Systems at the University of Melbourne, and colleagues, have investigated the growing trend of crowdfunding for unproven stem cell-based treatments.
Using quantitative and qualitative data collected from two popular fundraising sites, the research examined how these sites are used to fund purported stem cell ‘treatments’ or ‘therapies’.
In addition to mapping the use and success of these online campaigns by people with different health conditions in different locations, the research also considered the types of narratives campaign organisers use to compel others to donate to their cause. The study showed that misleading statements about the possible benefits of unproven stem cell-based interventions and expertise of providers were embedded in highly emotive patient stories of struggle and hope for an improved quality of life. Notably, successful campaigns for unproven ‘treatments’ raised on average double the funds than campaigns for other medical treatments and expenses.
Tanner and her colleagues argue that the use of crowdfunding for unproven stem-cell based interventions – a strategy that is actively encouraged by providers of these costly commercial interventions – is likely to be of financial benefit to both crowdfunding platforms and businesses selling them yet may not benefit or could even harm patients, as recent examples have shown . Given that campaigns rarely disclose outcomes of ‘treatment’, and echo hyped claims of benefit and possible cure, misinformation about experimental treatments are also being amplified in and by generous and well-meaning communities through Facebook shares and tweets of campaigns.
With the rising popularity of medical crowdfunding generally – and the recent passage of federal ‘Right-to-Try’ legislation in the US that enables terminally ill patients access to experimental interventions – crowdfunding for experimental interventions is likely to increase. This important research shows that understanding the factors that compel people to donate, and how the heart-breaking personal stories of suffering and hope that are present on these sites may be influencing what counts as truth, expertise and evidence of potential benefit and risk to patients, is critical. Countering the misinformation that is being amplified by these sites, and better understanding the impact of their use on people seeking treatment, including those who fail to raise funds for interventions they understand to be their only way to alleviate their suffering, is also needed. Crowdfunding platforms also owe a duty of care to their users and should assess their policies around the promotion and misrepresentation of commercial experimental medical interventions that may be harmful to patients.
Read the full journal article.
Dr Claire Tanner