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

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.