ELSIcon2022 • Paper • June 3, 2022
Kiana Amini, Vence Bonham
The advent of genetic therapy technologies implicates both tremendous therapeutic promise and potential risk. Sickle cell disease (SCD) is at the forefront of the development of novel, curative-based genetic therapies. Despite considerable scientific advances, the challenge of patients’ access to high-quality information about these new therapies remains an obstacle to informed decision-making regarding interest in clinical trial participation. The resources that are currently available vary in accuracy, completeness, and accessibility, and were not created with full engagement of the varied stakeholders’ perspectives. To address this gap, we designed a deliberative engagement model, in which a multi-disciplinary group of patients, providers, researchers, and industry and government stakeholders purposefully worked in teams to create high-quality patient educational materials (PEM). Over the course of four workshops, participants offered their unique perspectives to collectively determine the most accurate, appropriate, and accessible ways to communicate the complex topic of gene therapy. Throughout this process, we recorded their deliberations, and surveyed and interviewed each participant regarding their experience. In this paper, we will present our findings from this deliberative engagement process, including social network data, comparison of participant experiences, evaluation of power dynamics, and assessment of the PEMs developed. Our findings will inform the scientific community on (1) the process of creating gene therapy PEMs, and (2) utilizing a stakeholder engagement model to address the challenges that arise with the advancement of genetic therapies.