Challenges in Improving Genomic Literacy: Results from National and Regional Surveys of Genomic Knowledge, Attitudes, Concerns, and Behaviors

Abstract

AbstractPurposeInformation about genomics is increasingly available to mainstream society, with more and more emphasis on using genomic information to make health care decisions. To determine how prepared people are to use this knowledge to make critical health-related decisions, we assessed the public’s level of genomic literacy and whether this knowledge affects their engagement in behaviors related to genomics, such as getting genetic testing.MethodsA survey assessing perceived and actual knowledge, attitudes, concerns, sources of information, and behaviors related to genomics was administered to national and regional samples of participants. A hierarchical linear regression tested whether knowledge and attitudes predicted engagement in behaviors related to genomics.ResultsParticipants had good basic knowledge of genetics, though they were less familiar with the term “the human genome.” They also displayed positive attitudes towards genomic research, despite expressing many concerns. Both greater knowledge and more positive attitudes significantly and independently predicted greater engagement in genetic testing and other related proactive health behaviors.ConclusionKnowledge and concerns about genomics impact the public’s ability and willingness to obtain genetic testing and engage in other proactive health behaviors. The public’s genomic literacy could be enhanced by integrating their knowledge (e.g of DNA) with broader concepts (e.g. the human genome and genomics) and how they relate to health. Future research is needed on interventions that do this, to improve the public’s genomic literacy through relationships that build trust