Between hope and evidence: how community advisors demarcate the boundary between legitimate and illegitimate stem cell treatments

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19 Citations (Scopus)

Abstract

Stem cell science provides an exemplary study of the management of hope . On the one hand, raising hopes and expectations is a seen as a necessary aspect of securing investment in promising innovative research. On the other, such hyperbole risks raising hopes to a level that may lead people to undertake undue risks, which may ultimately undermine confidence in medical research. In this context, the management of hope thus involves the negotiation of competing claims of truth about the value and safety of particular treatments and about the trustworthiness of providers. Using Gieryn s concept of boundary-work, this article examines the means by which this work of managing hope is undertaken. Drawing on data collected as part of our study that investigated the perspectives of those who are consulted by patients and their carers about stem cell treatments, we explore how these community advisors - both scientists and clinicians with a stake in stem cell research and representatives from patient advocacy groups - demarcate the boundary between legitimate and illegitimate treatments. In particular, we examine how these actors rhetorically use evidence to achieve this demarcation. We argue that analysing accounts of how advisors respond to patient enquiries about stem cell treatments offers a window for examining the workings of the politics of hope within contemporary bioscience and biomedicine. In conclusion, we emphasize the need to re-conceptualize the boundary between science and non-science so as to allow a better appreciation of the realities of health care in the age of medical travel.
Original languageEnglish
Pages (from-to)188 - 206
Number of pages19
JournalHealth
Volume19
Issue number2
DOIs
Publication statusPublished - 1 Mar 2015

Keywords

  • bioethics
  • experiencing illness and narratives
  • health policy
  • illness behaviour
  • technology in health care

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