‘I put it on the back burner most days’: Living with chronic risk

Abstract

Continued advances in genetics and genomics research suggest that more and more people will be identified ‘at risk’ for common diseases such as cancer, heart disease or diabetes. A perspective for understanding how people adapt to and manage inherited risk, as well as identifying differences in individual response to DNA information would be useful in the planning and provision of genetics health services. This article adopts a ‘chronic risk’ perspective to explore living at risk of Huntington disease (HD), a fatal genetic disorder. Qualitative data analysis suggested two broad themes that illustrated living with chronic risk: (1) biographical disruption, including threats to self-identity and changes to relationships with others; and (2) zones of relevance, the conditions under which risk is or is not salient. Findings are relevant to the provision of genetics health services, particularly in follow-up support to individuals at risk for HD and their families.