Literature DB >> 17418469

Genetics, insurance and participation: how a Citizens' Jury reached its verdict.

Paul Bennett1, Susan J Smith.   

Abstract

Access to life insurance is subject to health discrimination. Whether this discrimination should take into account the results of predictive genetic tests is a topic of public debate. This paper draws from the deliberations of the Edinburgh (Scotland) Citizens' Jury on Genetic Test Results and Life Insurance to evaluate the capacity of one participatory research method to inform debates on genetics and insurance. We show that through a process of knowledge-building, cross-examination and deliberation, 'lay' jurors are able to assimilate complex information, engage in subtle argument and arrive at well-reasoned, clearly warranted conclusions. The Citizens' Jury approach has a further key advantage: it embraces the formation and articulation of normative ideas. It brings public understandings of how things ought to be into an arena dominated by 'expert' opinion. These normative indicators, which in this case relate to fairness and trust, are often overlooked by policy makers. However, they are key to democratic decision-taking and relevant for health promotion.

Entities:  

Mesh:

Year:  2007        PMID: 17418469     DOI: 10.1016/j.socscimed.2007.02.029

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


  9 in total

1.  The integration of citizens into a science/policy network in genetics: governance arrangements and asymmetry in expertise.

Authors:  Geneviève Daudelin; Pascale Lehoux; Julia Abelson; Jean L Denis
Journal:  Health Expect       Date:  2010-10-28       Impact factor: 3.377

2.  Including the public in pandemic planning: a deliberative approach.

Authors:  Annette J Braunack-Mayer; Jackie M Street; Wendy A Rogers; Rodney Givney; John R Moss; Janet E Hiller
Journal:  BMC Public Health       Date:  2010-08-19       Impact factor: 3.295

3.  Deliberations with American Indian and Alaska Native People about the Ethics of Genomics: An Adapted Model of Deliberation Used with Three Tribal Communities in the United States.

Authors:  Erika Blacksher; Vanessa Y Hiratsuka; Jessica W Blanchard; Justin R Lund; Justin Reedy; Julie A Beans; Bobby Saunkeah; Micheal Peercy; Christie Byars; Joseph Yracheta; Krystal S Tsosie; Marcia O'Leary; Guthrie Ducheneaux; Paul G Spicer
Journal:  AJOB Empir Bioeth       Date:  2021-06-14

4.  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

5.  Collaborative learning framework for online stakeholder engagement.

Authors:  Dmitry Khodyakov; Terrance D Savitsky; Siddhartha Dalal
Journal:  Health Expect       Date:  2015-08-21       Impact factor: 3.377

6.  CJCheck Stage 1: development and testing of a checklist for reporting community juries - Delphi process and analysis of studies published in 1996-2015.

Authors:  Rae Thomas; Rebecca Sims; Chris Degeling; Jackie M Street; Stacy M Carter; Lucie Rychetnik; Jennifer A Whitty; Andrew Wilson; Paul Ward; Paul Glasziou
Journal:  Health Expect       Date:  2016-10-05       Impact factor: 3.377

7.  Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality.

Authors:  Oliver Feeney; Pascal Borry; Heike Felzmann; Lucia Galvagni; Ari Haukkala; Michele Loi; Salvör Nordal; Vojin Rakic; Brígida Riso; Sigrid Sterckx; Danya Vears
Journal:  J Community Genet       Date:  2017-10-24

8.  Investigating the Extent to Which Patients Should Control Access to Patient Records for Research: A Deliberative Process Using Citizens' Juries.

Authors:  Mary P Tully; Kyle Bozentko; Sarah Clement; Amanda Hunn; Lamiece Hassan; Ruth Norris; Malcolm Oswald; Niels Peek
Journal:  J Med Internet Res       Date:  2018-03-28       Impact factor: 5.428

9.  Obtaining consumer perspectives using a citizens' jury: does the current country of origin labelling in Australia allow for informed food choices?

Authors:  Elizabeth Withall; Annabelle M Wilson; Julie Henderson; Emma Tonkin; John Coveney; Samantha B Meyer; Jacinta Clark; Dean McCullum; Rachel Ankeny; Paul R Ward
Journal:  BMC Public Health       Date:  2016-12-09       Impact factor: 3.295

  9 in total

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