Biomedical ethics and genetic epidemiology

Abstract

Biomedical ethics developed in the late twentieth century as a challenge to the self- regulatory ethic that previously governed medical practice. Yet in recent years bioethics has come under scrutiny from the social sciences, which claim that the field relies upon an idealised notion of moral agency and fails to consider the extent to which ethical discourse is embedded in a wider societal context. In addition, bioethical concepts such as patient autonomy and informed consent have also recently been challenged by the rise of genetic medicine. After evaluating debates in the historical and philosophical development of biomedical ethics, this thesis uses a case study in genetic epidemiology (commonly referred to as biobanking) to examine competing normative and empirical claims made by bioethicists and social scientists. The study investigates the views and experiences of potential donors to a biobank in north-west England. Data analysis gives particular emphasis to socio-ethical issues such as consent, genetic donation, altruism, and benefit-sharing. Evidence from the case study illustrates that bioethics is susceptible to many of the charges levelled against it - namely that it lacks proper understanding of the processes by which moral concepts and categories are embedded in ongoing forms of social practice and experience. The thesis concludes with suggestions as to how bioethics may better combine philosophical and sociological methods.