Medicine, genealogical, dietary, sports training and prevention services increasingly use genomic data. Hence, everyone may likely be confronted directly or indirectly with genomics. The trust and engagement of citizens concerning genomics and its ethical, legal and societal issues (ELSI) are thus critical.

Sciensano set up an online DNA debate to investigate Belgian citizens’ attitudes towards genomics and its associated ELSI. The dedicated website included various informative materials and a deliberative platform where citizens could share their opinions, under a pseudonym, on several ethical questions, including one specific question on data sharing. In total, 1127 citizens posted 1258 opinions, including students from about 75 high schools, who debated within their classrooms. We performed an inductive thematic analysis to present citizens’ opinions related to genomic data sharing.

Participants were willing to share their genomic data but were also cautious towards the potential abuses and their resulting harms. The majority supported the sharing for at least medical, scientific and forensic purposes, provided that protective conditions were met:

1)     Respecting individuals’ privacy and integrity since genomic data is considered highly personal. Anonymization is essential to avoid discrimination by insurance companies, employers or commercial companies, who could take unjustified advantage or use these data against individuals.

2)     Traceability and control: Many participants felt unsure and worried about the non-traceability of their genomic data, the actual compared to the announced usage, unknown future research on these data and safe storage. Therefore, participants claimed the right to know where their data are stored, who can access them and for which purposes. Additionally, specialized institutions or governmental authorities should control the responsible sharing of genomic data.

Furthermore, many participants acknowledged both the individual and the societal value of genomic information. The common good may, under certain conditions, overrule personal benefit. For instance, a minority accepted genomic data usage for forensic research without their permission or a genetic passport for everyone. Nevertheless, because of DNA’s profoundly personal character, people should individually and freely decide to share their data.

The DNA debate describes Belgian citizens’ values and norms concerning genomic information usage and its associated ELSI. Many participants supported a soft precautionary approach to genomic data sharing, in which the benefits of genomic data can only be realized when proportional protective measures avert potential risks and harms