What's Missing? Discussing Stem Cell Translational Research in Educational Information on Stem Cell “Tourism”

Abstract

Stem cell tourism is a growing industry in which patients pursue unproven stem cell therapies for a wide variety of illnesses and conditions. It is a challenging market to regulate due to a number of factors including its international, online, direct-to-consumer approach. Calls to provide education and information to patients, their families, physicians, and the general public about the risks associated with stem cell tourism are mounting. Initial studies examining the perceptions of patients who have pursued stem cell tourism indicate many are highly critical of the research and regulatory systems in their home countries and believe them to be stagnant and unresponsive to patient needs. We suggest that educational material should include an explanation of the translational research process, in addition to other aspects of stem cell tourism, as one means to help promote greater understanding and, ideally, curb patient demand for unproven stem cell interventions. The material provided must stress that strong scientific research is required in order for therapies to be safe and have a greater chance at being effective. Through an analysis of educational material on stem cell tourism and translational stem cell research from patient groups and scientific societies, we describe essential elements that should be conveyed in educational material provided to patients. Although we support the broad dissemination of educational material on stem cell translational research, we also acknowledge that education may simply not be enough to engender patient and public trust in domestic research and regulatory systems. However, promoting patient autonomy by providing good quality information to patients so they can make better informed decisions is valuable in itself, irrespective of whether it serves as an effective deterrent of stem cell tourism.

The Case for Stem Cell Counselors

“…In the United States, patients may frequent unregulated clinics in other states or within their own state. When it comes to guarding against stem cell tourism, there is little reliable information for potential patients on how the translational process ensures the safety and efficacy of stem cell treatments ( Master et al., 2013 ). Disease advocacy groups lack good web-based educational content about stem cell clinical translation, and even scientific organizations have little information on proven stem cell treatments, the clinical translation process, and stem cell pseudomedicine ( Master et al., 2014 ).…”

Clinically relevant aspects of stem cell technologies: current state of play

“…While these documents are effective in delivering these core messages, there is very little discussion of the contemporary scientific developments underpinning this upcoming generation of experimental cell‐based therapies. In order to effectively counsel patients about these treatments, it will become increasingly valuable for clinicians in all fields to have a basic understanding of the general principles and challenges of translating stem cell technologies from bench to bedside . In this rapidly expanding field, it is challenging for clinicians to remain up to date with relevant aspects of these developments; therefore, this review aims to summarize recent advances, unsolved problems and future directions with the goal of enabling clinicians to identify the relevant aspects and specific risks associated with clinical trials and commercial therapies utilizing stem cell technologies.…”

“…In order to effectively counsel patients about these treatments, it will become increasingly valuable for clinicians in all fields to have a basic understanding of the general principles and challenges of translating stem cell technologies from bench to bedside. 9 In this rapidly expanding field, it is challenging for clinicians to remain up to date with relevant aspects of these developments; therefore, this review aims to summarize recent advances, unsolved problems and future directions with the goal of enabling clinicians to identify the relevant aspects and specific risks associated with clinical trials and commercial therapies utilizing stem cell technologies. To assist readers not familiar with the area, a glossary of terms is included in Table 1. to educate prospective patients of the objectives of each stage of trial and the high number of trials of each stage which do not progress further ( Table 2).…”

Governing new global health-care markets: the case of stem cell treatments

“…A debate has already commenced about what forms of public education are required in this field, what types of information should be included and how and by whom it should be delivered (Master et al 2013). Closely linked to this are studies and discussions of the role of physicians in patients' decisions about stem cell treatments, the educational resources they require and the ethics of the relationship between medical authority and the patient's right to choose (Levine and Wolf 2012, Caulfield and Zarzeczny 2012, Zarzeczny et al 2014.…”