The social and ethical implications of changing medical technologies: the views of people living with genetic conditions.

This article presents empirical data on subjective levels of health and quality of life for individuals with early- or late-onset genetic conditions. Twelve adults with an early-onset condition (cystic fibrosis) and 12 adults with a late-onset condition in the family (Huntington's disease) participated in semi-structured interviews. Questions investigated perceptions of the body, quality of life and views on medical technology and testing. Transcripts were thematically analysed using a qualitative methodology (interpretative phenomenological analysis). The article focuses on the superordinate theme of 'What is a life worth living?'. Different emphases in judgements and definitions of quality of life were uncovered. At the same time the article emphasizes the convergence between the two groups in terms of overall views of quality of life and confirms that the voices of people living with genetic conditions should form part of wider bioethical debates arising from such advances.