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In Delicate Balance: Stem Cells and Spinal Cord Injury Advocacy

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Abstract

Spinal cord injury (SCI) is a major focus for stem cell therapy (SCT). However, the science of SCT has not been well matched with an understanding of perspectives of persons with SCI. The online advocacy community is a key source of health information for primary stakeholders and their caregivers. In this study, we sought to characterize the content of SCI advocacy websites with respect to their discussion of SCT and stem cell tourism. We performed a comprehensive analysis of SCI advocacy websites identified through a web search and verified by expert opinion. Two independent researchers coded the information for major themes (e.g., scientific & clinical facts, research & funding, policy, ethics) and valence (positive, negative, balanced, neutral). Of the 40 SCI advocacy websites that met inclusion criteria, 50% (N=20) contained information about SCT. Less than 18% (N=7) contained information on stem cell tourism. There were more than ten times as many statements about SCT with a positive valence (N=67) as with a negative valence (N=6). Ethics-related SCT information comprised 20% (N=37) of the total content; the largest proportion of ethics-related content was devoted to stem cell tourism (80%, N=30 statements). Of those, the majority focused on the risks of stem cell tourism (N=16). Given the still-developing science behind SCT, the presence of cautionary information about stem cell tourism at advocacy sites is ethically appropriate. The absence of stem cell tourism information at the majority of advocacy sites represents a lost educational opportunity.

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Acknowledgements

The authors gratefully acknowledge their collaborators Dr. Brian Kwon, Department of Orthopaedics, University of British Columbia, Ms. Joanne Reimer, National Core for Neuroethics at the University of British Columbia, and other members of the National Core for Neuroethics. We also thank Professor Wolfram Tetzlaff, at the University of British Columbia, and Don Reed (Roman Reed Spinal Cord Injury Foundation) who provided expert opinion on SCI advocacy. We wish to acknowledge Roland Nadler for his contribution to the data analysis, Emily Borgelt for editorial assistance, and Aline Tabet for statistical analysis. This work was supported by the US-Canada Fulbright Program (awarded to Sara Parke), and the Stem Cell Network - Networks of Centres of Excellence (NCE)/Research 9/5251(CT8) (F. Miller, P.I.) and CIHR CNE #85117 (J. Illes, P.I.).

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Parke, S., Illes, J. In Delicate Balance: Stem Cells and Spinal Cord Injury Advocacy. Stem Cell Rev and Rep 7, 657–663 (2011). https://doi.org/10.1007/s12015-010-9211-9

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