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Regenerative Medicine, Unproven Therapies and the Framing of Clinical Risk

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Extraordinary Risks, Ordinary Lives

Part of the book series: Critical Studies in Risk and Uncertainty ((CRSTRU))

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Abstract

This chapter analyses unorthodox narratives of clinical risk in regenerative medicine, namely, in the context of controversies over the provision of yet unproven stem cell therapies in the US and Italy. The public presentation of risk by patients and providers of unapproved therapies is premised on an extraordinary epistemology of clinical risk that, while departing from the ordinary framing of risk in medicine and medical experimentation, also bears complex continuities with the conceptual and symbolic world from which it seeks to separate. Far from simply manifesting the clash of rationality and unruliness, this ambiguity brings into view how moral difference is produced, reproduced and challenged through the lived experience of disease in contemporary medical practices.

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References

  • Aicher, Robert H. 2013. Is the FDA Regulating the Practice of Medicine? Aesthetic Surgery Journal 33 (3): 452–455. https://doi.org/10.1177/1090820X13476879.

    Article  Google Scholar 

  • Annas, G.J. 1989. Faith (Healing), Hope and Charity at the FDA: The Politics of AIDS Drug Trials. Villanova Law Review 34 (5): 771.

    Google Scholar 

  • Arnold, Carrie. 2012. Texas Stem Cell Rules May Impede Clinical Research. The Lancet 379 (9828): 1776. https://doi.org/10.1016/S0140-6736(12)60744-2.

    Article  Google Scholar 

  • Beyleveld, D. 2013. Hope and Belief. In Philosophy of Mind, 1–36. Nova Science Publishers, Inc. https://www.scopus.com/inward/record.uri?eid=2-s2.0-84892218339&partnerID=40&md5=604cbc911bf9d0203877ed6243a8277b.

  • Bianco, Paolo. 2013. Don’t Market Stem-Cell Products ahead of Proof. Nature 499 (7458): 255–255. https://doi.org/10.1038/499255a.

    Article  Google Scholar 

  • Bianco, Paolo, and Douglas Sipp. 2014. Regulation: Sell Help Not Hope. Nature News 510 (7505): 336.

    Google Scholar 

  • Bianco, Paolo, Pamela Gehron Robey, and Paul J. Simmons. 2008. Mesenchymal Stem Cells: Revisiting History, Concepts, and Assays. Cell Stem Cell 2 (4): 313–319.

    Google Scholar 

  • Blasimme, Alessandro. 2013. Translating Stem Cells to the Clinic: Scientific Societies and the Making of Regenerative Medecine. Quaderni (2): 29–44.

    Google Scholar 

  • Blasimme, Alessandro, and Emmanuelle Rial-Sebbag. 2013. Regulation of Cell-based Therapies in Europe: Current Challenges and Emerging Issues. Stem cells and development 22 (S1): 14−19.

    Google Scholar 

  • Boellstorff, Tom, Bonnie Nardi, Celia Pearce, T.L. Taylor, and George E. Marcus. 2012. Ethnography and Virtual Worlds: A Handbook of Method. Princeton: Princeton University Press.

    Google Scholar 

  • Brown, Patrick. 2015. Theorising Uncertainty and Risk Across Different Modernities: Considering Insight form ‘Non-North-Western’ Studies. Health, Risk & Society 17 (3–4): 185–195.

    Article  Google Scholar 

  • Cambrosio, Alberto, Peter Keating, Thomas Schlich, and George Weisz. 2006. Regulatory Objectivity and the Generation and Management of Evidence in Medicine. Social Science & Medicine 63 (1): 189–199. https://doi.org/10.1016/j.socscimed.2005.12.007.

    Article  Google Scholar 

  • Caplan, Arthur, and Bruce Levine. 2010. Hope, Hype and Help: Ethically Assessing the Growing Market in Stem Cell Therapies. The American Journal of Bioethics 10 (5): 24–25.

    Article  Google Scholar 

  • Caulfield, Timothy, Kalina Kamenova, Ubaka Ogbogu, Amy Zarzeczny, Jay Baltz, Shelly Benjaminy, Paul A. Cassar, et al. 2014. Research Ethics and Stem Cells. EMBO Reports, December, e201439819. https://doi.org/10.15252/embr.201439819.

  • Caulfield, Timothy, Douglas Sipp, Charles E. Murry, George Q. Daley, and Jonathan Kimmelman. 2016. Confronting Stem Cell Hype. Science 352 (6287): 776–777. https://doi.org/10.1126/science.aaf4620.

    Article  Google Scholar 

  • Cook, Julia. 2018. Imagined Futures: Hope, Risk and Uncertainty. Critical Studies in Risk and Uncertainty Series. Cham: Palgrave Macmillan.

    Google Scholar 

  • Cyranoski, David. 2011. Texas Prepares to Fight for Stem Cells. Nature 477: 377–378.

    Google Scholar 

  • ———. 2013. Controversial Stem-Cell Company Moves Treatment Out of the United States. Nature News.

    Google Scholar 

  • Delorme, B., J. Ringe, C. Pontikoglou, J. Gaillard, A. Langonné, L. Sensebé, D. Noël, C. Jorgensen, T. Häupl, and P. Charbord. 2009. Specific Lineage-Priming of Bone Marrow Mesenchymal Stem Cells Provides the Molecular Framework for Their Plasticity. Stem Cells 27 (5): 1142–1151.

    Article  Google Scholar 

  • Deleuze, Gilles. 1992. Postscript on the Societies of Control. October 59: 3–7.

    Google Scholar 

  • Delvecchio Good, Mary-Jo, Byron J. Good, Cynthia Schaffer, and Stuart E. Lind. 1990. American Oncology and the Discurse on Hope. Culture, Medicine and Psychiatry 14: 59–79.

    Article  Google Scholar 

  • Dorcy, K.S. 2010. Hegemony, Hermeneutics, and the Heuristic of Hope. Advances in Nursing Science 33 (1): 78–90. https://doi.org/10.1097/ANS.0b013e3181cd7c50.

    Article  Google Scholar 

  • Dresser, Rebecca. 2001. When Science Offers Salvation: Patient Advocacy and Research Ethics. Oxford University Press.

    Google Scholar 

  • Eliott, J.A., and I.N. Olver. 2007. Hope and Hoping in the Talk of Dying Cancer Patients. Social Science and Medicine 64 (1): 138–149. https://doi.org/10.1016/j.socscimed.2006.08.029.

    Article  Google Scholar 

  • Epstein, Steven. 1996. Impure Science: AIDS, Activism, and the Politics of Knowledge, Vol. 7. University of California Press.

    Google Scholar 

  • Farran, Carol J, Kaye A. Herth, and Judith M. Popovich. 1995. Hope and Hopelessness: Critical Clinical Constructs. Sage Publications, Inc.

    Google Scholar 

  • Foucault, Michel. 1982. The Subject and Power. Critical Inquiry 8 (4): 777–795.

    Article  Google Scholar 

  • ———. 2009. Security, Territory, Population: Lectures at the College De France, 1977–1978. Picador USA.

    Google Scholar 

  • Garrard, Eve, and Anthony Wrigley. 2009. Hope and Terminal Illness: False Hope Versus Absolute Hope. Clinical Ethics 4 (1): 38–43. https://doi.org/10.1258/ce.2008.008050.

    Article  Google Scholar 

  • Gieryn, T.F. 1983. Boundary-Work and the Demarcation of Science from Non-Science: Strains and Interests in Professional Ideologies of Scientists. American Sociological Review: 781–795.

    Google Scholar 

  • Herrestad, H., S. Biong, B. Mccormack, M. Borg, and B. Karlsson. 2014. A Pragmatist Approach to the Hope Discourse in Health Care Research. Nursing Philosophy 15 (3): 211–220. https://doi.org/10.1111/nup.12053.

    Article  Google Scholar 

  • Hine, Christine M. 2015. Ethnography for the Internet: Embedded, Embodied and Everyday. London and New York: Bloomsbury.

    Google Scholar 

  • ———. 2000. Virtual Ethnography, 1st ed. London and Thousand Oaks, CA: Sage.

    Book  Google Scholar 

  • Howe, E.G. 2003. Hope or Truth: Commentary on the Case of Mr. T. Journal of Clinical Ethics 14 (3): 208–219.

    Google Scholar 

  • Hyun, Insoo. 2013a. Therapeutic Hope, Spiritual Distress, and the Problem of Stem Cell Tourism. Cell Stem Cell 12 (5): 505–507. https://doi.org/10.1016/j.stem.2013.04.010.

  • ———. 2013b. Bioethics and the Future of Stem Cell Research. Cambridge University Press.

    Google Scholar 

  • Jasanoff, S. 2004. 1 The Idiom of Co-Production. States of Knowledge: The Co-Production of Science and Social Order, 1.

    Google Scholar 

  • Kadlac, Adam. 2015. The Virtue of Hope. Ethical Theory and Moral Practice 18 (2): 337−354.

    Google Scholar 

  • Kamenova, Kalina, and Timothy Caulfield. 2015. Stem Cell Hype: Media Portrayal of Therapy Translation. Science Translational Medicine 7 (278): 278ps4–278ps4. https://doi.org/10.1126/scitranslmed.3010496.

  • Master, Zubin, Amy Zarzeczny, Christen Rachul, and Timothy Caulfield. 2013. What’s Missing? Discussing Stem Cell Translational Research in Educational Information on Stem Cell ‘Tourism.’ The Journal of Law, Medicine & Ethics 41 (1): 254–268. https://doi.org/10.1111/jlme.12017.

    Article  Google Scholar 

  • Mattingly, Cheryl. 2011. The Paradox of Hope: Journeys Through a Clinical Borderland, 1st ed. Berkeley: University of California Press.

    Google Scholar 

  • Moore, Henrietta L. 2013. Still Life: Hopes, Desires and Satisfactions. Wiley.

    Google Scholar 

  • Moreno, Jonathan D. 1996. Reassessing the Influence of the Nuremberg Code on American Medical Ethics. Journal of Contemporary Health Law and Policy 13: 347.

    Google Scholar 

  • Novas, Carlos. 2006. The Political Economy of Hope: Patients’ Organizations Science and Biovalue. BioSocieties 1 (3): 289–305. https://doi.org/10.1017/S1745855206003024.

    Article  Google Scholar 

  • Nygren, Katarina Giritli, Anna Olofsson, and Susanna Öhman. 2020. A Framework of Intersectional Risk Theory in the Age of Ambivalence. Critical Studies in Risk and Uncertainty Series. Cham: Palgrave Macmillan.

    Google Scholar 

  • Paley, J. 2014. Hope, Positive Illusions and Palliative Rehabilitation. Progress in Palliative Care 22 (6): 358–362. https://doi.org/10.1179/1743291X14Y.0000000084.

    Article  Google Scholar 

  • Pergert, P., and K. Lützén. 2012. Balancing Truth-Telling in the Preservation of Hope: A Relational Ethics Approach. Nursing Ethics 19 (1): 21–29. https://doi.org/10.1177/0969733011418551.

    Article  Google Scholar 

  • Petersen, Alan. 2015. Hope in Health: The Socio-Politics of Optimism. Palgrave Macmillan.

    Google Scholar 

  • Petersen, Alan, Claire Tanner, and Megan Munsie. 2014. Between Hope and Evidence: How Community Advisors Demarcate the Boundary Between Legitimate and Illegitimate Stem Cell Treatments. Health 19 (2): 188–206.

    Article  Google Scholar 

  • Rabinow, Paul. 1992. Artificiality and Enlightenment: From Sociobiology to Biosociality. In Incorporations, ed. J. Crary and S. Kwinter. Urzone.

    Google Scholar 

  • Rachul, Christen M., Ivona Percec, and Timothy Caulfield. 2015. The Fountain of Stem Cell-Based Youth? Online Portrayals of Anti-Aging Stem Cell Technologies. Aesthetic Surgery Journal, April, sju111. https://doi.org/10.1093/asj/sju111.

  • Rial-Sebbag, Emmanuelle, and Alessandro Blasimme. 2014. The European Court of Human Rights’ Ruling on Unproven Stem Cell Therapies: A Missed Opportunity? Stem Cells and Development 23 (S1): 39–43.

    Article  Google Scholar 

  • Rose, Nikolas, and Carlos Novas. 2005. Biological Citizenship. In Global Assemblages: Technology, Politics and Ethics as Anthropological Problems, ed. A. Ong and S.J. Collier. Blackwell.

    Google Scholar 

  • Schneiderman, L.J. 2005. The Perils of Hope. Cambridge Quarterly of Healthcare Ethics 14 (2): 235–239. https://doi.org/10.1017/S0963180105050310.

    Article  Google Scholar 

  • ServickJun, K. 2017. Texas Has Sanctioned Unapproved Stem Cell Therapies. Will It Change Anything? Science | AAAS, June 15. http://www.sciencemag.org/news/2017/06/texas-has-sanctioned-unapproved-stem-cell-therapies-will-it-change-anything.

  • Simpson, Christy. 2004. When Hope Makes Us Vulnerable: A Discussion of Patient-Healthcare Provider Interactions in the Context of Hope. Bioethics 18 (5): 428–447. https://doi.org/10.1111/j.1467-8519.2004.00408.x.

    Article  Google Scholar 

  • Sipp, D., T. Caulfield, J. Kaye, J. Barfoot, C. Blackburn, S. Chan, M. De Luca, A. Kent, C. McCabe, M. Munsie, and M. Sleeboom-Faulkner. 2017. Marketing of Unproven Stem Cell–Based Interventions: A Call to Action. Science Translational Medicine 9 (397).

    Google Scholar 

  • Smith, Nicholas H. 2010. From the Concept of Hope to the Principle of Hope. In Hope Against Hope, 1−22. Brill.

    Google Scholar 

  • Stempsey, William E. 2014. Hope for Health and Health Care. Medicine, Health Care and Philosophy 18 (1): 41–49. https://doi.org/10.1007/s11019-014-9572-y.

    Article  Google Scholar 

  • The Hastings Center. 1976. Biomedical Ethics and the Shadow of Nazism: A Conference on the Proper Use of the Nazi Analogy in Ethical Debate, 8 April 1976, 6 (4): 1.

    Google Scholar 

  • Wesche, T. 2012. Moral and happiness: Hope in the works of Kant and Adorno. Deutsche Zeitschrift Fur Philosophie 60 (1): 49–71. https://doi.org/10.1524/dzph.2012.0005.

    Article  Google Scholar 

  • Zinn, Jens O. 2016. ‘In-Between’ and Other Reasonable Ways to Deal with Risk and Uncertainty: A Review Article. Health, Risk & Society 18 (7–8): 348–366.

    Article  Google Scholar 

  • ———. 2020. Understanding Risk-Taking. Critical Studies in Risk and Uncertainty Series. Cham: Palgrave Macmillan.

    Google Scholar 

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Author information

Authors and Affiliations

  1. ETH Zurich, Zurich, Switzerland

    Alessandro Blasimme

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  1. Alessandro Blasimme
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Correspondence to Alessandro Blasimme .

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Editors and Affiliations

  1. University of Copenhagen, Copenhagen, Denmark

    Beata Åšwitek

  2. University College London, London, UK

    Allen Abramson

  3. Independent Researcher, Copenhagen, Denmark

    Hannah Swee

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Blasimme, A. (2022). Regenerative Medicine, Unproven Therapies and the Framing of Clinical Risk. In: Åšwitek, B., Abramson, A., Swee, H. (eds) Extraordinary Risks, Ordinary Lives. Critical Studies in Risk and Uncertainty. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-030-83962-8_4

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  • DOI: https://doi.org/10.1007/978-3-030-83962-8_4

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