Citizens’ Literacy in Genomics: A Delphi Survey of Multidisciplinary Experts in the Field

Abstract

Introduction: Citizens’ literacy in the field of genomics represents one of the cornerstones of proper implementation of genomics in healthcare services. In order to identify the most effective tools by which to elevate citizens’ literacy in genomics, we conducted a survey among the group of multidisciplinary experts within the Italian Network of Genomics in Public Health (GENISAP). Methods. Two rounds of Delphi surveys were carried out in order to identify the main topics, tools, settings, and healthcare professionals’ backgrounds that might usefully be included in citizens’ training initiatives in genomics. To this end, we distributed a questionnaire with 39 items that are scored on a 5-point scale. Results. By the end of the Delphi process, 43 items were selected (19 for the topics, 6 for the tools, 9 for settings, and 9 for the healthcare professionals’ backgrounds). Genomic tests and counseling were among the main topics included, while in terms of tools, face-to-face discussion with healthcare professionals was prioritized by the experts. Among the most appropriate platforms, the group suggested internet/social media and healthcare settings. The healthcare professional considered to have the most relevant role in terms of citizens’ education was a medical doctor with a specialism in clinical genetics. Discussion. Our study attempted to identify the main characteristics that could guide the design of interventions to promote public literacy regarding the field of genomics. Specifically, we have identified the main topics to be included in an educational program for citizens, the tools and settings to consider when providing educational initiatives on genomics, and the healthcare professionals who need to be involved in these initiatives. Therefore, the results of our study provide the necessary basis for the realization of new training initiatives on genomics to be proposed and offered to citizens, these initiatives to be implemented at a national and international level for achieving the transformational change in health systems that is required by the precision health approach.