Ethics as an act of listening

Abstract

Over the past fifty years concerns regarding ethical and human rights abuses arising from biomedical research have led to the establishment of sophisticated processes for ethical oversight of research and to increasing regulation of many aspects of the research endeavour. Research using human tissue collections (tissue banking research) is no exception, with evermore stringent regulations emerging in response to concerns about consent, privacy and commercialisation. These measures are perfectly compatible with central bioethical concerns such as the need to ensure autonomy and the right to control one’s body and personal information, and the need to protect vulnerable research subjects from harm. So why, one might ask, are scientists so resentful of these regulations and so concerned about their potential adverse impact (e.g. Furness 2004)? Does this mean that the scientific community is dangerously insensitive to the public’s mistrust and desire for autonomy? Or are they more aware of public values? It is possible to theorise endlessly about such matters, but at some point it is necessary to carry out empirical research into public attitudes and values. While the ‘empirical turn’ in bioethics has its limitations and is primarily descriptive, rather than normative (Sugarman 2004), as Chandros Hull et al remind us, if bioethics does not accurately reflect community values may impede science and misrepresent the needs of “vulnerable” populations.