Understanding what drives Genetic Study Participation: Perspectives of Patients, Carers, and Relatives

<bold>Background:</bold> This study examined attitudes towards genetic research among patients, caregivers, and relatives and gathered feedback for enhancing genetic study delivery and smooth integration of genetics into clinical practice. <bold>Methods:</bold> Using purposive sampling, 63 stakeholders from the NBR and PAH Cohort studies were recruited to take part in semi-structured interviews and focus groups, which were analysed thematically. <bold>Results:</bold> Key interview themes revealed insights into PAH genetic research participation, encompassing attitudes toward genetic research, understanding of study aims, disease knowledge, motivations and barriers, awareness of consent procedures, interest in data use, and communication of genetic results and their familial impact. Genetic research participation is influenced by altruism, personal experiences with diagnostic journeys and trust in healthcare teams, concerns and hopes for family members, and a sense of community belonging. Time, financial constraints, and burdensome study procedures are commonly cited reasons for non-participation; hardly any patients shared identical sets of attitudes, emphasising the need for personalised approaches to recruitment. Many patients had limited engagement with study materials, including consent forms. Those receiving individual genetic results were satisfied, while those without feedback were disappointed. <bold>Conclusions:</bold> Increasing genetic research participation and enhancing its integration into clinical practice requires adapting engagement strategies, clear communication, and support from healthcare providers, policymakers, and researchers.