Severity in the genomic age: the significance of lived experience to understandings of severity

Abstract

This article explores the significance of lived experience to understandings of severity in the genomic age. It draws upon data from structured interviews with 21 people living with monogenic conditions in England. The article argues that while lived experiences are subjective, participants consider the severity of disease by the impact a condition has on a person’s quality of life and mental health; both of these interplays are influenced by social, economic, and environmental factors. The three factors and considerations to the impact of living with disease on mental health are generally absent from current frameworks designed to assess severity for clinical applications of genomic technologies such as preimplantation genetic testing (PGT). This article describes ways in which such factors impact the quality of life and the mental health of people living with genetic conditions. It also indicates what lived experiences, which illustrate the impact of these factors, have to offer policy-makers when they are assessing the concept of severity or seriousness of genetic conditions for applications of existing and potential genomic technologies in the genomic age.