Aim: To better understand how prospective customers interpret claims of businesses marketing unproven stem cell products that they are engaging in research activities. Materials & methods: The authors examined 408 crowdfunding campaigns for unproven stem cell interventions for references to research activities. Results: The authors identified three overarching themes: research as a signifier of scientific credibility; the experimental nature of stem cells as a rationale for noncoverage by insurers; and contributing to the advancement of science by engaging in research. Conclusion: The NIH, US FDA and others should be concerned about being co-opted to misrepresent the nature of these businesses' activities. Efforts are also needed to better inform those considering purchasing unproven stem cell interventions about their relationship to legitimate research.
Bibliographical noteFunding Information:
Claims that these campaigns were raising funds to allow the recipient to take part in stem cell studies were used to motivate giving on the grounds that donations would advance credible scientific research intended to develop safe and effective therapies for particular clinical indications. These campaigners saw themselves as making a positive contribution to science through their participation in these studies, giving them the opportunity ‘to help with research’. This conviction was stated explicitly in several cases, positioning the treatment as part of a clinical trial that would directly contribute to FDA approval of the treatment: “My progress will be followed and studied by Stemgenex, and the results will be shared with the FDA in the fight for approval”. In one case, a campaign presented the recipient as hoping to take part in a clinical trial with uncertain results and, for this reason, presented her as self-sacrificing for the good of others: “It takes courageous people like Jan to participate in trials, such as this one, in order to help future MS patients”. Similarly, another campaigner put her desire for financial assistance not in
© 2018 2018 Jeremy Snyder.
Copyright 2018 Elsevier B.V., All rights reserved.
- patient perspectives
- social media
- stem cell research
- unproven interventions