In recent years, policymakers and experts showed particular interest in public engagement in genomics. However, most projects focus on expressed values, without exploring the concepts behind them. To understand which uses of genomic information citizens support, one should first examine their conceptualization of the human genome and then explore the values they assign to it. We organized a citizen forum on the ethical, legal and societal issues surrounding the use of genomic information in healthcare. During three weekends, a panel of 32 citizens, informed by experts of different backgrounds, debated and reflected with the final aim of producing political recommendations for the ministry of public health. An inductive thematic analysis of their discussions shows that citizens view the genome as the most intimate part of individuals, that warrants protection to avoid breach of privacy. Additionally, citizens claim that humans are more than their genetic makeup: they are socially, culturally, emotionally, and psychologically complex, and should be treated and considered accordingly. This is why citizens vehemently oppose genetic categorization and discrimination. Finally, a fundamental tension remains between two conceptions of the genome - the individual’s property versus common good - with consequences on sensitive issues such as commercialization, access to and sharing of data, individual responsibility and autonomy. Citizens’ conceptions of the genome inform such different norms and values that it is important for policymakers and experts to appreciate them to be able to inform citizens and engage with them on genomics. Innovative Partnership for Action Against Cancer funded this study.
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