Determinants of perceived personal utility of genomic testing across nine EU countries

Background

The personal utility of genetic and genomic testing - the non-clinical benefits individuals derive from genomic information - is attracting growing policy interest as these technologies expand into mainstream healthcare. EU evidence from the general public remains almost absent: existing studies have focused on clinical populations or single national contexts.

Methods

Cross-sectional online survey in nine EU countries (Estonia, France, Germany, Greece, Ireland, Italy, Poland, Portugal, Sweden; N = 6,064; Oct–Nov 2025). Genomic familiarity and knowledge were assessed using an adapted GLAC scale. Perceived utility of genomic testing on personal life, family or social life, and society was assessed on 7-point Likert-scale. Proportions and odds ratios (ORs) – through multivariable logistic regressions - were estimated with post-strata weighted adjustment.

Results

Maximum agreement was 9.4% for personal life, 8.7% for family/social life, and 9.1% for society. Respondents’ country was significantly associated with all three outcomes (p < 0.001): Estonia showed the highest agreement (14.9-17.7%) and Germany the lowest (4.1-5.5%). In multivariable models, genomic familiarity (ORs 1.42–1.48) and trust in genetics (ORs 1.58–1.67) were positively associated across all three domains (p < 0.001), whilst genomic knowledge was inversely associated (ORs 0.10–0.11; p < 0.001). Perceived benefit of understanding physical or cognitive capacities (ORs 1.44–1.70) and improving day-to-day health choices (ORs 1.39–1.74) were independently associated with all outcomes (p ≤ 0.03).

Conclusions

Positive perception of personal utility is uncommon across nine EU countries. The inverse relationship with genomic knowledge suggests more informed individuals are more cautious. These findings highlight the need to rigorously evaluate the evidence base for the non-clinical benefits attributed to genetic and genomic tests, informing both policy decisions and their implementation in current practice.

Key messages

• Positive perception of the personal utility of genomic testing is uncommon across nine EU countries, with substantial variation by country and consistent inverse association with genomic knowledge.

• Rigorously evaluating the non-clinical benefits of genomic tests is essential to inform both policy decisions and the implementation of genomic testing in clinical practice.