Difficult decisions: social and ethical implications of changing medical technology

A primary objective of this paper is to present data on subjective perceptions of health and quality of life in individuals living with early- or late-onset genetic conditions (cystic fibrosis, CF, and Huntington's disease, HD, respectively). The paper will also discuss the social and ethical dilemmas raised by advances in reproductive and testing technology, consider the different emphases in definitions in quality of life, and speculate on criteria used to make reproductive decisions following prenatal testing.

Adults suffering from CF and HD attending two regional centres in the UK took part in semi-structured interviews between late 1999 and summer 2001. Self-report data on how a specific body image is constructed were also collected. Interviews were analysed using thematic qualitative analysis, and the body data were analysed using SPSS.

Qualitative analysis uncovered themes relating to the question of how we value life, and exposed broad ethical dilemmas arising from advances in testing and treatment technology. These data are supported by findings from a body chart analysis that highlight a discrepancy between the quality of life experienced by this group of respondents and the way they believe the wider public perceives them, particularly in reference to pain.

Although some of the data support previous findings, such as the disability paradox, other voices contradict this view. Due to their unique experiences, the accounts of individuals currently living with genetic conditions should be considered in the wider bio-ethical debates.