Abstract

Genome sequencing has the potential to dramatically change the medical landscape by improving disease diagnosis, treatment and prevention. Today, thousands of NHS patients are already having their genomes sequenced as part of the 100,000 Genomes Project. Outside the research and clinical contexts, hundreds of thousands of individuals have also purchased direct-to-consumer genetic and genomic tests that provide not only health-related information, but also non-health-related information such as ancestry. The rapid developments in genomic sequencing technologies and corresponding increases in availability raise challenges as well as opportunities. The psychosocial challenges include how to: facilitate informed decision-making at scale; communicate results to individuals in ways that are understandable and not overwhelming; and avoid psychological harms such as anxiety, confusion and false reassurance. In this seminar, I will address the psychological benefits and risks of genome sequencing, and how social science research can help answer questions about the value of personal genomics for individuals. I will draw particularly on findings from the HealthSeq project, a longitudinal cohort study in which ostensibly healthy individuals received personal results from genome sequencing and completed multiple questionnaires and in-depth qualitative interviews along the way.