Unruly ethics: on the difficulties of a bottom-up approach to ethics in the field of genomics

Abstract

This paper explores the difficulties of addressing ethical questions of genome research in a public engagement setting where laypeople and scientists met for a longer period of time. While professional ethics mostly ignores public meaning, we aimed at a bottom-up approach to ethics in order to broaden the way in which ethical aspects of genomics can be addressed. However, within this interaction we identified a number of difficulties that constrained an open discussion on ethical issues. Thus, we analyze how ethical issues were approached, framed, debated, displaced or closed. We then elaborate on the possibilities and limits of dealing with ethics in such a participatory setting. We conclude by hinting at what should be taken into consideration when approaching issues of science and ethics more “upstream.”