Citizens' conceptions of the genome: Related values and practical implications in a citizen forum on the use of genomic information

Abstract

Abstract Background The development of large data sets, including genomic data, coupled with rapid advances in personalized medicine where citizens increasingly face complex choices about the use of their genomic information implies that citizens are essential stakeholders in genomics. They should be engaged in the ethical, legal and societal issues to produce a framework that fosters trust and allows them to guide the technology based on their values. Objective This article highlights that citizens' conceptions of the human genome inform about and make sense of their main values regarding the use of genomic information, which is critical for policymakers, experts and stakeholders to understand to maintain the public support in genomics. Method Through an inductive thematic approach, we reanalysed data collected for the Belgian citizen forum, which aimed to produce recommendations for the Ministry of Public Health and other stakeholders. Results Citizens expressed four conceptions of the genome that determined which uses of genomic information they supported: the most intimate part of individuals; ‘I am more than my genome’; the individual's property vs the common good; and uncertainty and fear. Conclusion Diversity in their conceptions reveals remaining conflicts of values among citizens, mainly regarding a conception of the genome as an individual property or a common good. However, despite differing conceptions, shared values emerged such as solidarity, privacy, no genetic discrimination and the right to an open future, where individual and common interests coexist. Patient or public contribution The panel of the citizen forum consisted of 32 citizens.

Keywords

• common good
• ethics
• genomics
• individual property
• privacy
• public engagement