One example of health misinformation that I come across quite frequently in my work with clients who have acquired brain injuries and spinal cord injuries is the potential use of stem-cells as promising “cure” for devastating neurological injuries. I have had numerous clients and families ask about the possibility of going to the United States for stem cell therapy, with one recently telling me that he “read something promising at the Mayo clinic” and thought he might give it a try. These conversations can be quite delicate to navigate. On the one hand, I do not fault any person for wanting to find a solution to “fix” their new permanent functional impairment, and no one wants to dash people’s hopes that such medical advances might be possible in the future. Brain and spinal cord injuries have a significant impact on one’s life and it makes sense to me that people want to grab onto any sense of hope that this could be made different in the future. At the same time, it can be difficult for myself and the physicians that I work with the adequately convey the lack of evidence—and the potential very real danger—of accessing such unproven therapies in the face of such hope and optimism, combined with the limited health or scientific literacy of the majority of our clients.
Much of the trouble seems to arise from the difficulty that the general public has in discerning between real credible scientific sources and research that has been taken out of context, sensationalized, or exaggerated to be made more compelling. In their examination of the media discourse in the topic of stem-cells Marcon et al. (2017) found widespread exaggeration of scientific findings, and sensationalist online marketing of unproven therapies, combined with a generally negative outlook on conventional medicine. A recent study by Matthew et al. (2020) looked specifically at the scientific validity of claims made in direct to consumer marketing of stem-cell based therapies for musculoskeletal injuries and found that 96 percent of the websites studied contained at least one piece of misinformation, with the vast majority of websites having multiple false or misleading claims. While some of the claims found were inaccurate with respect to the basic science of stem cells, many were unproven and even demonstrably false claims of their clinical effectiveness (Matthew et al., 2020).
The reality is that, although knowledge about potential clinical applications of stem cells is advancing, and there are certainly numerous potential applications to the use of stem-cells as a component of treatment for various diseases in the future, the science is nowhere near as advanced as the popular media may have led some to believe. The only current safe and clinically proven use for stem cells relates to bone marrow transplant-related procedures for blood cancers (Master et al., 2021).
There are numerous potential public health implications of the widespread misinformation related to stem cells. I have personally seen clients spend a lot of money travelling to the United States and Asia for these types of direct-to-consumer advertised treatments, which have resulted in no outcome other than a smaller bank account and a lot of disappointment. The implications can be far more dire than this, however. The use of unproven stem cell treatments have resulted in significant injuries and deaths—often as a result of infection or other complications (Master et al., 2021). Also worth considering if the fact that these types of unproven treatments, and the fallout resulting from significant death or injury from the same, may actually threaten or slow down legitimate research efforts (Master et al., 2021). In this way, misleading and false claims about stem cells threatens the future promise of regenerative medicine.
References:
Kingery, M.T., Schoof, L., Strauss, E. J., Bosco, J.A., & Halbrecht, J. (2020). Online direct-to-consumer advertising of stem cell therapy for musculoskeletal injury and disease: Misinformation and violation of ethical and legal advertising parameters. Journal of Bone and Joint Surgery, 102 (1). https://doi.org/10.2106/JBJS.19.00714
Master, Z., Matthews, K.R., & Abou-el-Enein, M. (2021). Unproven stem cell interventions: A global public health problem requiring global deliberation. Stem Cell Reports, 16 (6). https://doi.org/10.1016/j.stemcr.2021.05.004
Marcon, A.R., Murdoch, B. &Caulfield, T. (2017). Fake news portrayals of stem cells and stem cell research. Regenerative Medicine, 12 (7). https://doi.org/10.2217/rme-2017-0060
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