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

Abstract

Since genomics is becoming commonplace in healthcare for the diagnosis, treatment, and prevention, the prospect of generating a genomic passport for all citizens is gaining traction. While this would have many advantages, it raises ethical issues requiring societal debate alongside academic reflection. Hence, Sciensano—the Belgian scientific Institute of Public Health—organised an online citizen engagement on genomic information usage, including a question on a genomic passport for all. The inductive thematic analysis of participants’ contributions highlighted vulnerability as a fundamental concern, while this has not received sufficient attention so far in genomics. Participants expressed their vulnerability in two ways. First, the genomic passport would inform them about their ontological vulnerability. By revealing their constitutional weaknesses (predisposition to diseases), it reminds them that everyone is unavoidably and perennially at risk of being harmed. Second, the misuse of the genomic passport can add situational vulnerabilities (e.g., discrimination causing psychological and economic harm). Moreover, the fundamental uncertainty in genomics—how will such sensitive information be used, and how will the science evolve?—exacerbates these vulnerabilities. This article ends with recommendations to alleviate these vulnerabilities in genomics now and in the future in which the genomic passport may become a reality.

How to Deal with Uninformed and Poorly Informed Opinions of Citizens? A Critical Approach to Online Public Engagement

“…In total, 1,127 citizens voiced 1,258 opinions. For a more detailed description of the methods and the qualitative analysis of all contributions, see Mayeur, Saelaert, and Van Hoof (2021) and Mayeur, Mertes, and Van Hoof (2023).…”