Normalising life at risk of Huntington's disease. A qualitative study of backgrounds and coping strategies of fears of genetic discrimination.

ABSTRACT: Studies in the sociology of genetics have shown how living with a predisposition to a genetic disorder often comes with significant psycho-social burdens and struggles. One of these struggles is the fear of genetic discrimination. Despite genetic non-discrimination regulations, research shows people still worry about being subjected to genetic discrimination. This article adds to this existing body of literature by showing why people still worry about genetic discrimination and how they cope with these worries. Our findings derive from an analysis of semi-structured, in-depth interviews with individuals at risk for Huntington's disease (HD) in Belgium. Concerns of genetic discrimination are grounded in the participants' family backgrounds. Our participants, having witnessed numerous events

SUBMITTER: Wauters A 

PROVIDER: S-EPMC8187417 | biostudies-literature | 2021 Jun

REPOSITORIES: biostudies-literature