"Holding your breath": Interviews with young people who have undergone predictive genetic testing for Huntington disease

Abstract

Guidelines recommend that predictive genetic testing for Huntington disease (HD) should be deferred until the age of majority (18 years in most countries). However, opposition to these guidelines exists, with some professionals arguing that testing may be beneficial for young people, and should be considered much earlier. Empirical evidence is unable to substantiate either position. We aimed to (1) explore the experience of predictive genetic testing for HD from the young person's perspective and to (2) document the impact that testing has upon various aspects of young people's lives. Eight young people who had undergone predictive genetic testing for HD were interviewed. They ranged in age ..