Stem Cell Tourism and Public Education: The Missing Elements

Master, Zubin; Robertson, Kelsey; Frederick, Daniel; Rachul, Christen; Caulfield, Timothy

doi:10.1016/j.stem.2014.08.009

Cited by 45 publications

(38 citation statements)

References 8 publications

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“…Our second suggestion is for the increased involvement of patient advocacy groups that have the organizational resources and networks to reach a large number of individuals with their messaging [15,48]. While the findings did not indicate high levels of trust in patient advocacy groups for information on stem cell interventions abroad, this may reflect the lack of available information from these groups rather than distrust.…”

Section: Biasmentioning

confidence: 96%

A Dichotomy of Information-Seeking and Information-Trusting: Stem Cell Interventions and Children with Neurodevelopmental Disorders

Sharpe

Pietro

Jacob

et al. 2016

Stem Cell Rev and Rep

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Parents and primary caregivers of children with Cerebral Palsy (CP) and Autism Spectrum Disorder (ASD) are faced with difficult treatment choices and management options for their children. The potential of stem cell technologies as an interventional strategy for CP and ASD has gained attention in the last decade. Information about these interventions varies in quality, resulting in a complex landscape for parent decision making for a child's care. Further complicating this landscape are clinics that advertise these interventions as a legitimate treatment for a fee. In this study, we surveyed individuals who considered taking their child with ASD or CP abroad for stem cell interventions on their use of different sources of stem cell related health information and their level of trust in these sources. Participants reported that while the Internet was their most frequent source of information, it was not well-trusted. Rather, information sources trusted most were researchers and the science journals in which they publish, other parents of children with CP and ASD, and healthcare providers. These findings highlight a dichotomy between information-seeking preferences and information-trusted sources. We discuss the challenges of health science communication and present innovative opportunities to increase communication with trusted and reliable sources as part of an integrated multi-pronged approach.

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Section: Biasmentioning

confidence: 96%

A Dichotomy of Information-Seeking and Information-Trusting: Stem Cell Interventions and Children with Neurodevelopmental Disorders

Sharpe

Pietro

Jacob

et al. 2016

Stem Cell Rev and Rep

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“…17 this study and others highlight that the user go-to or information-pull strategy of existing resources is simply inadequate. 18 The time is ripe for a physicianoriented mobile app or a similar resource that regularly pushes out specific updates about discoveries or trial results to subscribers to remediate this persistent gap. Scott's 19 proposal for a new cadre of professionals in the stem cell arena--stem cell counsellors akin to genetic counsellors--could also offer much needed additional clinical intervention resources to address the full range of factors, including not only ISCI interest in the details of potential procedures but also underlying emotional interests in them.…”

Section: Discussionmentioning

confidence: 99%

Perspectives on strategies and challenges in the conversation about stem cells for spinal cord injury

Jacob

Snyder

et al. 2015

Spinal Cord

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Study design: Qualitative study. Objective: To examine how trusted communication between individuals with spinal cord injury (ISCIs) and physicians who care for ISCIs is affected by the discussion of advances in stem cell research and interventions locally and abroad. Setting: Canada and the United States (US). Methods: Semi-structured interviews with ISCIs and physicians. A thematic analysis approach was applied to more than 12 h of data to derive prominent themes and describe relationships between them. Results: A convergence of factors involving transparency impact trusted communication between ISCIs and physicians about stem cells and spinal cord injury (SCI). ISCIs expressed that trusted communication is strengthened when physicians exhibit caring, attentive and positive attitudes that are underpinned by domain-specific knowledge and scholarship. Perceived reluctance to communicate or lack of knowledge poses significant challenges. Physicians also emphasised the importance of transparency for trusted communication but expressed that the still limited clinical reality of treatment choices for SCI and the pressures imposed by external resources are significant stressors that complicate the communication landscape. Both groups cited the range and variable quality of information sources, and the difficulty associated with navigating them, as priorities for action that would remediate these tensions. Conclusions: (1) Epistemic transparency should be privileged over silence. (2) A new generation of innovations in research and clinical trial dissemination about stem cells for SCI is needed to remedy the perceived inadequacies of existing information content and accessibility.

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“…First and foremost, public education must be a priority, as a majority of the dangers posed by unregulated stem cell clinics depend on a degree of misinformation on the patient’s part; misinformation is most effectively combatted by education. Ensuring that patients are well informed before deciding on stem cell therapies, as well as rooting out the myths and hype which surrounds stem cells, may have profound effects on curbing the growing stem cell clinic and medical tourism trends [73]. Educational resources already exist, but are not widely available or utilized [73], [74].…”

Section: Future Perspectivesmentioning

confidence: 99%

Regulated and Unregulated Clinical Trials of Stem Cell Therapies for Stroke

Liska

Crowley

Borlongan

2017

Transl. Stroke Res.

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Several lines of laboratory investigations reporting solid safety profiles and robust efficacy readouts of stem cells in clinically relevant animal models have advanced stem cell transplantation as an experimental therapy for stroke. Unfortunately, translating laboratory findings into effective clinical trials entails rigorous regulatory examinations, which posed a major challenge in the application of stem cells to patients. As a consequence of this slow pace of clinical entry, and a media-propagated hype narrating stem cells as a “magic bullet”, a dangerous market has been created for unregulated stem cell clinics. These clinics are often guilty of misleading patients and delivering low-quality, even harmful, treatments. Additionally, these medical tourism-purported clinical procedures, which have been performed even in the US, are likely to negatively impact on the true science and clinical value of stem cells. For the full potential of stem cell therapies to be realized, these pressing public misconceptions and regulatory clinical concerns must be addressed. Here, we provide the scientific evidence supporting the safe and effective conduct of stem cells. Arguably, relying on such evidence-based science to dictate the translation of stem cells from the laboratory to the clinic should allow an objective assessment of the risks and the rewards, and the delineation of the hype from hope of this experimental stroke therapy.

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Stem Cell Tourism and Public Education: The Missing Elements

Cited by 45 publications

References 8 publications

A Dichotomy of Information-Seeking and Information-Trusting: Stem Cell Interventions and Children with Neurodevelopmental Disorders

A Dichotomy of Information-Seeking and Information-Trusting: Stem Cell Interventions and Children with Neurodevelopmental Disorders

Perspectives on strategies and challenges in the conversation about stem cells for spinal cord injury

Regulated and Unregulated Clinical Trials of Stem Cell Therapies for Stroke

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