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Big promise, big business
Published in Christine Hauskeller, Arne Manzeschke, Anja Pichl, The Matrix of Stem Cell Research, 2019
Claire Tanner, Alan Petersen, Casimir MacGregor, Megan Munsie
The growth of investment and research in stem cell science has been accompanied by a significant growth in the market of purported stem cell treatments (SCTs). In recent years, the phenomenon of stem cell tourism1 has emerged as an issue of scientific and regulatory concern. Stem cell tourism refers to a global trend whereby patients and carers travel across national borders and jurisdictions to purchase, sometimes at considerable cost, claimed SCTs for which there exists little to no clinically verified evidence of safety or benefit (Petersen et al., 2017). This chapter considers the conditions that enable commercial stem cell businesses to flourish through an examination of the rise and fall of the X-Cell Center in Germany. Adopting a sociological approach, we consider how the fastest growing markets are currently built and sustained. In particular, we consider how a combination of regulatory ambiguity and/or loopholes, direct-to-consumer marketing which exploits public perceptions of high national standards in regulation and medical care where clinics are located, combined with the sociocultural belief in the power of stem cells, as well as tailored one-on-one ‘care’ for clients, create the conditions for businesses to flourish.
An overview of human pluripotent stem cell applications for the understanding and treatment of blindness
Published in John Ravenscroft, The Routledge Handbook of Visual Impairment, 2019
Louise A. Rooney, Duncan E. Crombie, Grace E. Lidgerwood, Maciej Daniszewski, Alice Pébay
To distinguish these issues from the broader problem of medical tourism, the term “stem cell tourism” was coined to describe occasions in which patients pay large sums of money to travel to such countries to receive stem cell treatments that have not necessarily been proven safe or effective (Barclay, 2009; MacReady, 2009). Treatments are advertised to treat conditions such as multiple sclerosis, motor neuron disease, cerebral palsy, optic nerve damage, ataxia, spinal cord injury and the effects of stroke. Clinics offering stem cell therapies often employ direct-to-consumer advertising with the promise of great therapeutic benefit and no risk. These marketing ploys often have emphasis on patient testimonials rather than scientific data to support treatments. Consumers to which this advertising appeals are often suffering from chronic or terminal illness and may have exhausted all other treatment options in their home country. Therefore, the decision to undertake these journeys and associated risks is usually based upon false hope, optimism and misinformation such as promise of efficacious treatment that has not been sufficiently researched and proven. It is not just health consumers that the optimism of stem cell therapies has affected – patient advocates and service providers who are finding ways to service the growing demand for these treatments are also influenced, promoting the employment of sceptical therapies.
Stem Cell Research and the Regulation of a Moving Target
Published in Sarah Devaney, Stem Cell Research and the Collaborative Regulation of Innovation, 2013
The phenomenon of ‘stem cell tourism’ has developed, in which desperate patients suffering from diseases which are untreatable through conventional methods travel to SC clinics which are willing to apply unproven and unap-proved therapies.122 This brings with it ‘physical and financial risks, lack of transparency and appropriate review procedures, exploitation of vulnerable patients (including minors)’ and is supported through print media’s increasingly positive portrayal of this form of treatment.123 For example, patients travelled from around the world to XCell, a stem cell clinic in Dusseldorf, Germany which was exploiting a loophole in the law which allowed unproven treatments to be provided on a commercial basis.124 After a Romanian child who had been injected in the brain with stem cells died of internal bleeding there in 2011, the clinic closed down. However, it has been argued that SC tourists travelling to unregulated jurisdictions to receive treatments for their serious conditions do not consider themselves uninformed.125 Rather, they gather information via the internet and become members of ‘more or less stable networks and groups’ of patients who, aware of general risks of receiving untrialled treatments, decide to take these risks in the absence of viable alternatives.126
Stem cell treatments for amyotrophic lateral sclerosis: a critical overview of early phase trials
Published in Expert Opinion on Investigational Drugs, 2019
Stephen A. Goutman, Masha G. Savelieff, Stacey A. Sakowski, Eva L. Feldman
The possibility of treating neurodegenerative diseases, including ALS, with stem cells, has generated intense public interest, in particular in hopeful patients and their families. This has also led to ‘stem cell tourism.’ ‘Stem cell tourism’ is an unethical industry that offers patients untested and potentially unsafe procedures [96,97]. The procedures are conducted outside of regulatory oversight, without consideration for patient safety [96]. These industries are motivated by profit and therefore exploit patients financially through a false hope of treatment response. The treatments are not part of any approved clinical trials, are untested products that lack oversight, do not conform to research or clinical rigor, and patients–who are not properly made aware of the risks–therefore cannot provide informed consent [98]. In addition to placing patients at risk, they harm the legitimacy of genuine stem cell research, which could undermine public trust [96,97]. Therefore, guidelines for stem cell research (e.g. regulatory oversight, ethical approval, procedures conducted within versus outside of a clinical trial, data sharing, possible conflicts of interest) and for ALS patients (e.g. genuine-informed consent, explanation of risk-benefit ratios, safety measures) are advocated [98].