In the context of healthcare, and more specifically in genomics, the concept of vulnerability has been studied principally for particularly vulnerable groups and from the perspective of patients in the clinical context. However, the growing influence of genomics, especially the potential implementation of genomic screening programs in healthy populations, may generate more fundamental and shared vulnerabilities among the general population. This reflection emerged from the DNA debate, an online public engagement initiative in Belgium, where 1127 citizens expressed 1258 opinions about ethical issues related to the use of genomic information in medicine and society. The inductive qualitative analysis of these contributions let uncertainty, distrust, fears, and lack of security emerge as significant themes, all related to a fundamental core theme of vulnerability.
Participants expressed their vulnerability in two ways. First, genomic testing informs individuals about their ontological vulnerability. Every human is unavoidably vulnerable because of the risk (genetic predispositions) of being harmed by constitutional weaknesses such as diseases, anxiety, and mortality. This first vulnerability is exacerbated by the twofold uncertainty everyone is confronted with when doing genomic testing: on the one hand, in the format of the results (probabilities, risks) and, on the other hand, regarding the specific findings of the test. Second, the uncertainty about how genomic information will be used in the future puts everyone at risk of situational vulnerabilities. For instance, our genomic information could one day be used to discriminate against us, causing psychological, economic, and social harm. These two types of vulnerability citizens experience in genomics influence the ethical framework around the broad implementation of genomic technologies. The ontological vulnerability should be managed, even if it cannot be eliminated, and there is a societal responsibility to avoid, or at least minimize, situational vulnerabilities in genomics.
Conclusion: Citizens from the DNA debate expressed fundamental vulnerabilities in genomics, bringing new ethical questions and challenges. These should be considered by healthcare professionals, health policymakers, experts, and other relevant stakeholders in genomics to prevent harm and maintain the public’s trust.