Understanding changes in genetic literacy over time and in genetic research participants

Abstract

As genomic and personalized medicine becomes mainstream, assessing and understanding the publics genetic literacy is paramount. Because genetic research drives innovation in this area and involves much of the public, it is equally important to assess its impact on genetic literacy. We designed a survey to assess genetic literacy in three ways (familiarity, knowledge, and skills) and distributed it to two distinct samples: 2050 members of the general population, and 2023 individuals currently enrolled in a large-scale genetic research study. We compared these data to a similar survey implemented in 2013. The results indicate that familiarity with basic genetic terms in 2021 (M = 5.36, p<.001) and knowledge of genetic concepts in 2021 (M = 9.06, p = 0.002) is significantly higher compared to 2013 (M = 5.08; M = 8.72). Those currently enrolled in a genetic study were also significantly more familiar with genetic terms (M = 5.79, p<.001), more knowledgeable of genetic concepts (M = 10.27, p<.001), and scored higher in skills (M = 3.57, p<.001) than the general population (M = 4.98; M = 9.06; M = 2.65).The results suggest that genetic literacy is improving over time, though there is room for improvement. The data also suggest that participating in genetic research is one avenue for improving genetic literacy. We conclude that educational interventions are needed to ensure familiarity with and comprehension of basic genetic concepts. We also suggest further exploration of the impact of genetic research participation on genetic literacy to determine mechanisms for potential interventions.