No therapy currently exists for arrhythmogenic right ventricular cardiomyopathy (ARVC), a progressive cardiogenetic condition conferring elevated risk for sudden cardiac death. Emerging gene therapies for ARVC have the potential to fill this gap. However, little is known about how adults with ARVC or any other inherited cardiac condition appraise the risks and benefits of gene therapy research or what considerations might influence decisions about clinical trial participation. Twenty adults with clinically diagnosed and gene positive ARVC participated in semi-structured interviews that explored perceptions of gene therapy and hypothetical decision making around gene therapy clinical trial participation. Transcripts of these interviews were qualitatively coded and abductively analyzed. Participants exhibited enthusiasm for gene therapy with varied levels of interest in trial participation. Patients considered perceived disease severity, level of adaptation to disease, level and nature of personal ARVC community involvement, coping styles, and life stage as relevant to decision-making about trial enrollment. Objective metrics of cardiovascular clinical severity had little association with interest in participation. Potential ethical concerns included patient vulnerability and extreme trust in clinical teams collaborating on industry-led trials. These findings are relevant for the informed consent process, particularly as some participants’ expectations were at odds with those of researchers. Trial characteristics that mattered to participants included trial stage, perceived trial burden, degree of clinician and researcher trust, and the anticipated future cost of gene therapy. Insights from this study may affect trial planning and communication with participants who have inherited cardiac conditions.
