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

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.

Personal Genomes in Practice: Exploring Citizen and Healthcare Professionals’ Perspectives on Personalized Genomic Medicine and Personal Health Data Spaces Using a Mixed-Methods Design

“…When asked to designate the owner of genomic data, most participants elected patients as the likely owner of their medical data. These results echo other citizen engagement projects in the Belgian population [ 68 , 69 ].…”

“…Hesitancy to share with commercial entities was expressed across cohorts due to worries about data breaches, for-profit motives, lack of regulation, and a negative societal impact on healthcare. These findings correspond with other citizen engagement projects on genome data in Belgium [ 68 ] and stress the importance of trustworthy, transparent data infrastructures.…”

Do genomic passports leave us more vulnerable or less vulnerable? Perspectives from an online citizen engagement

“…Participants of the DNA debate identified many potential misuses in various fields. Exclusion and discrimination by insurers, employers, commercial companies, and the government were the most cited examples, which aligns with the results from previous public engagement initiatives (Hopkins, Kinsella and Evans, 2021 ; Rivas Velarde et al, 2021 ; Mayeur and Van Hoof, 2021 ; Dheensa et al, 2019 ; Middleton et al, 2019 ; Haeusermann et al, 2018 ; Middleton et al, 2016 ). In addition, forensic uses of the genomic passport could lead to extensive profiling where people with specific genetic features or predispositions, such as aggressiveness, would become suspicious by default.…”

“…Data misuse would not only negatively impact the lives of individuals who share their data, but their close and distant relatives also run the risk of being affected, participants pointed out, meaning that their feeling of vulnerability exceeds their person. Participants’ awareness of eventually exposing their relatives and descendants at risk when sharing their genomic data has been reported many times (Dheensa et al, 2019 ; Middleton et al, 2019 ; Milne et al, 2019 ; Castell et al, 2019 ; Mayeur and Van Hoof, 2021 ; Haeusermann et al, 2018 ; Comité Consultatif national d’éthique, 2018 ; Middleton et al, 2016 ). The perspective of gathering so much sensitive information in a genomic passport or any other type of health record generated a feeling of vulnerability among participants.…”

“…As previously described by Onora O’Neill, we should aim for well-placed trust, not a blind leap of faith (O’Neill, 2004 ). In line with this idea, the majority of participants from two independent citizen fora prioritised harm prevention by imposing sharing restrictions for driven-profit actors over individual freedom (Rivas Velarde et al, 2021 ; Mayeur and Van Hoof, 2021 ).…”