The Social and Ethical Implications of Changing Medical Technologies: The Views of People Living with Genetic Conditions

Abstract

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.

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

“…Chapman interviewed 12 adults with a family history of HD and describes the way in which this knowledge can have an effect on the way people choose to live their life. One example she gives is ''living life to the full'' [Chapman, 2002b].…”

Keeping safe, keeping connected: A qualitative study of HIV-positive women's experiences of partner relationships

“…The term IPA is used to recognise the 'dual nature' of this analytic approach, acknowledging that whilst IPA is committed to elucidating participants' personal perceptions of the world, the researcher achieves this through a process of interpretative activity. It has been proposed that IPA can play a particularly useful role in health psychology (Smith, 1996) and this analytic method has now been employed to explore people's experiences of a wide-range of health problems and behaviours (e.g., Chapman, 2002;Osborn & Smith, 1998;Robson, 2002).…”

From the old to the new

“…A further limitation was the use of volunteers; perhaps the participants who came forward were more motivated or positive in their outlook, which may inadvertently have affected the results. The finally limitation is the relatively small sample size (Chapman, 2002). However, this is appropriate to the method used in the study.…”