Literature DB >> 21683492

Stock options, tax credits or employment contracts please! The value of deliberative public disagreement about human tissue donation.

Heather L Walmsley1.   

Abstract

'Deliberative democracy' is increasingly popular globally, as a means of securing public engagement with emerging health technologies and democratizing their governance. Architects of deliberative 'mini-publics' have tended, however, to privilege consensus within deliberation and the generation of 'action commitments' within a 'decisional context', despite widespread critique. Less attention has been paid to the phenomenon of persistent disagreement within constructed deliberative fora. This paper addresses this lacuna, performing a narrative analysis of four days of deliberation within one small group of demographically diverse public participants at the BC Biobank Deliberation (Vancouver, Canada, 2007). It reveals the value of listening to persistent deliberative disagreements. First, this paper argues that disagreements enable identification of deliberation and evaluation of its quality. Second, they generate insight into the deliberative process and the discursive means through which consensus can be achieved. Third, persistent deliberative disagreements can be creative of innovative governance solutions. In the case of the BC Biobank Deliberation, disagreements about compensation for biobank donors generated a range of suggestions for mediating between donor rights, corporate interests and societal needs--from tissue sample rentals to donor tax credits--suggestions that are unique to the existing academic and policy literature. Finally, this paper argues that practitioners should present persistent disagreements to public and policy audiences as an 'output' of deliberative democracy events.
Copyright © 2011 Elsevier Ltd. All rights reserved.

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Year:  2011        PMID: 21683492     DOI: 10.1016/j.socscimed.2011.05.005

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  6 in total

1.  A trade secret model for genomic biobanking.

Authors:  John M Conley; Robert Mitchell; R Jean Cadigan; Arlene M Davis; Allison W Dobson; Ryan Q Gladden
Journal:  J Law Med Ethics       Date:  2012       Impact factor: 1.718

2.  Priority setting and patient adaptation to disability and illness: outcomes of a qualitative study.

Authors:  John McKie; Rosalind Hurworth; Bradley Shrimpton; Jeff Richardson; Catherine Bell
Journal:  Health Care Anal       Date:  2014-09

3.  Examining the ethical and social issues of health technology design through the public appraisal of prospective scenarios: a study protocol describing a multimedia-based deliberative method.

Authors:  Pascale Lehoux; Philippe Gauthier; Bryn Williams-Jones; Fiona A Miller; Jennifer R Fishman; Myriam Hivon; Patrick Vachon
Journal:  Implement Sci       Date:  2014-06-21       Impact factor: 7.327

4.  Assessment of a multimedia-based prospective method to support public deliberations on health technology design: participant survey findings and qualitative insights.

Authors:  P Lehoux; J Jimenez-Pernett; F A Miller; B Williams-Jones
Journal:  BMC Health Serv Res       Date:  2016-10-26       Impact factor: 2.655

5.  Towards 'Engagement 2.0': Insights from a study of dynamic consent with biobank participants.

Authors:  Harriet Ja Teare; Michael Morrison; Edgar A Whitley; Jane Kaye
Journal:  Digit Health       Date:  2015-09-28

6.  The reported impact of public involvement in biobanks: A scoping review.

Authors:  Lidia Luna Puerta; Will Kendall; Bethan Davies; Sophie Day; Helen Ward
Journal:  Health Expect       Date:  2020-05-06       Impact factor: 3.318

  6 in total

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