The Social and Ethical Implications of Changing Medical Technologies: The Views of People Living with Genetic Conditions
- 1 March 2002
- journal article
- Published by SAGE Publications in Journal of Health Psychology
- Vol. 7 (2) , 195-206
- https://doi.org/10.1177/1359105302007002458
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.Keywords
This publication has 26 references indexed in Scilit:
- Genetic Information and “genetic Identity”Published by Springer Nature ,2007
- Interpretative Phenomenological Analysis and the New GeneticsJournal of Health Psychology, 2002
- “What Do You Think about Genetic Medicine?” Facilitating Sociable Public Discourse on Developments in the New GeneticsScience, Technology, & Human Values, 2000
- Attitudes Toward Genetic Counseling and Prenatal Diagnosis Among a Group of Individuals with Physical DisabilitiesJournal of Genetic Counseling, 2000
- Is there a coherent social conception of disability?Journal of Medical Ethics, 2000
- The disability paradox: high quality of life against all oddsSocial Science & Medicine, 1999
- Prenatal diagnosis and discrimination against the disabled.Journal of Medical Ethics, 1999
- Beware! Preimplantation genetic diagnosis may solve some old problems but it also raises new ones.Journal of Medical Ethics, 1999
- Quality of life in HIV disease as measured by the McGill Quality of Life QuestionnaireAIDS, 1996
- Patient and parental attitudes toward genetic screening and its implications at an adult cystic fibrosis centreClinical Genetics, 1994