Public perceptions and willingness to accept somatic gene therapy: A Belgian survey study.

Abstract

Background: Genetic disorders affect millions worldwide, yet fewer than 10% of patients currently receive effective treatment. While gene therapies offer significant promise, their clinical translation is hindered by technical, regulatory, and societal challenges. Low enrolment rates in clinical trials, ethical concerns surrounding inclusion criteria, and uncertainty about preventive applications all contribute to slow progress. Public perception plays a crucial role in shaping trial participation and the integration of gene therapies into healthcare systems. This study examines public attitudes in Belgium to support the responsible development and implementation of gene therapy trials.

Methodology: A cross-sectional online survey using convenience sampling was conducted in Belgium with adults (18+) recruited through local pharmacies. The survey included 12 items assessing self-reported knowledge of gene therapy and willingness to accept gene therapy. To evaluate willingness to accept, hypothetical vignettes were used, which varied by treatment characteristics (e.g., side effects, efficacy, limited evidence), patient age (5, 20, 65 years), and symptomatic status (symptomatic, asymptomatic with uncertain or expected future symptoms). Descriptive statistics summarised all items included in the questionnaire.

Results: The sample included 289 participants, of whom 67% had completed higher education, 64% had children, and 87% had heard of gene therapy before. Overall willingness was high. Attitudes were generally positive, with limited concerns about its experimental features (e.g., unknown side effects (12%), long-term effects (8%), and uncertain effectiveness (8%)). However, key barriers included fears of altered identity (39%), external pressure (38%), and skepticism about its novelty (31%). Uncertainty about symptom development consistently reduced willingness. Patients' age played a secondary role, with younger individuals generally receiving higher support for gene therapy than older adults.

Conclusion: Public attitudes toward gene therapy were largely positive, guided by perceived benefits over scientific certainty. Support favored curative over preventive use, with participants balancing autonomy and medical guidance in shared decision-making.