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

Abstract

As genomic and personalized medicine becomes mainstream, assessing and understanding the public's genetic literacy is paramount. Because genetic research drives innovation 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: 2,050 members of the general population and 2,023 individuals currently enrolled in a large-scale genetic research study. Wecompared these data to a similar survey implemented in 2013. The results indicate that familiarity with basic genetic terms in 2021 (M= 5.36 [range 1-7], p<0.001) and knowledge of genetic concepts in 2021 (M= 9.06 [56.6% correct], p= 0.002) are significantly higher compared to 2013 (familiarity: M= 5.08 [range 1-7]; knowledge: M= 8.72 [54.5% correct]). Those currently enrolled in a genetic study were also significantly more familiar with genetic terms (M= 5.79 [range 1-7], p<0.001) and more knowledgeable of genetic concepts (M= 10.57 [66.1% correct], p<0.001), and they scored higher in skills (M= 3.57 [59.5% correct], p<0.001) than the general population (M= 5.36 [range 1-7]; M= 9.06 [56.6% correct]; M= 2.65 [44.2% correct]). The results suggest that genetic literacy is improving over time, with room for improvement. We conclude that educational interventions are needed to ensure familiarity with and comprehension of basic genetic concepts and suggest further exploration of the impact of genetic research participation on genetic literacy to determine mechanisms for potential interventions.