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Seeing the Full Picture: The Hidden Cost of the Stem Cell and Regenerative Medicine Revolution

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Regenerative Biology of the Eye

Part of the book series: Stem Cell Biology and Regenerative Medicine ((STEMCELL))

Abstract

In recent decades, significant time, money and energy have been invested in the attempt to harness the regenerative power of stem cells to ameliorate the pain and suffering in a wide range of illnesses and injuries—from autoimmune disorders, congenital diseases and degenerative neurological conditions to acquired brain and spinal cord injuries. Here stem cells are often posited as a ‘holy grail’ with magical powers just waiting to be unlocked or revealed to the world through the toil and labour of those pioneers at the cutting edge of research. It is in this heightened context of anticipation and expectation that significant investments are also made by those on the other side of the bench; the people and their loved ones seeking help for the conditions and illnesses with which they live and die. For some, this investment involves at least considering, and often travelling to receive, experimental stem cell treatments (SCTs). Drawing on qualitative interviews with patients and carers who have made these journeys, this chapter offers a complex and contextualised picture for better understanding and responding to the needs of the increasing numbers of people considering or travelling overseas or within their own country for experimental SCTs.

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Abbreviations

HIV:

Human immunodeficiency virus

ISSCR:

International Society for Stem Cell Research

IV:

Intravenous therapy

SCT:

Stem cell treatment

US:

United States

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Acknowledgments

We would like to acknowledge our colleagues Prof. Alan Petersen and Dr. Kate Seear for their valuable contribution to the research that informed this chapter. We are also very grateful for the support of the patient/carer support networks who helped us recruit participants for our studies. Finally, and most importantly, this work would not be without the people who shared, with generosity and candour, their personal journeys to find a better quality of life. To each of the participants, thank you.

This research was funded by the Australian Research Council under the Discovery Projects scheme (DP120100921), and the Australian Government’s Department of Innovation, Industry, Science and Research under the National Enabling Technologies Strategy (NETS). Ethics clearance was obtained from the Monash University Human Research Ethics Committee (CF12/1532–2012000832; CF08/3073–2008001514; CF09/3234–2009001762). Pseudonyms were assigned to protect participants’ anonymity. Stem Cells Australia is a Special Research Initiative in Stem Cell Science funded by the Australian Research Council.

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Authors and Affiliations

  1. School of Social Sciences, Monash University, Clayton Campus, Melbourne, VIC, Australia

    Claire Tanner

  2. Education, Ethics, Law and Community Awareness Unit, Stem Cells Australia, The University of Melbourne, Parkville, VIC, Australia

    Megan Munsie

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  1. Claire Tanner
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  2. Megan Munsie
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Correspondence to Megan Munsie .

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Editors and Affiliations

  1. Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, Department of Ophthalmology, The University of Melbourne, East Melbourne, Victoria, Australia

    Alice Pébay

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Tanner, C., Munsie, M. (2014). Seeing the Full Picture: The Hidden Cost of the Stem Cell and Regenerative Medicine Revolution. In: Pébay, A. (eds) Regenerative Biology of the Eye. Stem Cell Biology and Regenerative Medicine. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-0787-8_15

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