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

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  • Bennett, Paul
  • Smith, Susan J.

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.

Suggested Citation

  • Bennett, Paul & Smith, Susan J., 2007. "Genetics, insurance and participation: How a Citizens' Jury reached its verdict," Social Science & Medicine, Elsevier, vol. 64(12), pages 2487-2498, June.
    • Handle: RePEc:eee:socmed:v:64:y:2007:i:12:p:2487-2498
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    References listed on IDEAS

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    1. Miller, Fiona Alice & Ahern, Catherine & Ogilvie, Jacqueline & Giacomini, Mita & Schwartz, Lisa, 2005. "Ruling in and ruling out: Implications of molecular genetic diagnoses for disease classification," Social Science & Medicine, Elsevier, vol. 61(12), pages 2536-2545, December.
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    3. Wendy Kenyon & Nick Hanley & Ceara Nevin, 2001. "Citizens' Juries: An Aid to Environmental Valuation?," Environment and Planning C, , vol. 19(4), pages 557-566, August.
    4. Graham Smith & Corinne Wales, 2000. "Citizens' Juries and Deliberative Democracy," Political Studies, Political Studies Association, vol. 48(1), pages 51-65, March.
    5. Hugh Ward & Aletta Norval & Todd Landman & Jules Pretty, 2003. "Open Citizens’ Juries and the Politics of Sustainability," Political Studies, Political Studies Association, vol. 51(2), pages 282-299, June.
    6. Bates, Benjamin R. & Lynch, John A. & Bevan, Jennifer L. & Condit, Celeste M., 2005. "Warranted concerns, warranted outlooks: a focus group study of public understandings of genetic research," Social Science & Medicine, Elsevier, vol. 60(2), pages 331-344, January.
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    Cited by:

    1. Damien French & Michael Laver, 2009. "Participation Bias, Durable Opinion Shifts and Sabotage through Withdrawal in Citizens' Juries," Political Studies, Political Studies Association, vol. 57(2), pages 422-450, June.
    2. Shane Doheny & Claire O'Neill, 2010. "Becoming Deliberative Citizens: The Moral Learning Process of the Citizen Juror," Political Studies, Political Studies Association, vol. 58(4), pages 630-648, October.
    3. Lehoux, Pascale & Daudelin, Genevieve & Demers-Payette, Olivier & Boivin, Antoine, 2009. "Fostering deliberations about health innovation: What do we want to know from publics?," Social Science & Medicine, Elsevier, vol. 68(11), pages 2002-2009, June.
    4. Street, Jackie & Duszynski, Katherine & Krawczyk, Stephanie & Braunack-Mayer, Annette, 2014. "The use of citizens' juries in health policy decision-making: A systematic review," Social Science & Medicine, Elsevier, vol. 109(C), pages 1-9.

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