Ethical uneasiness and the need for open-ended reflexivity: the case of research into older people with a wish to die

Abstract

This article focuses on research ethics in highly intimate research with possible impact on life and death. In order to stimulate an open-ended dialogue about research ethics, we reflect on four ethical challenges that came up during our research into older people with a wish to die. Drawing on our experiences, we discuss (1) the possibly confirming influence of our research on the death wish (moral experience of whether or not to disregard responsibility); (2) the suggested duty to intervene (moral experience of whether or not to compromise the person’s autonomy); (3) the researcher’s authority and power over the data (moral experience of threatening a person’s self-narrative) and (4) the dilemma of intimacy (moral experience of encountering the tragic). For guidance in addressing these challenges, we draw upon work on research ethics from phenomenological and care ethics scholars, as well as from those writing about relational ethics in health research. We suggest that being open about ethical uneasiness is important, because in most cases of a grey area, there are only open-ended answers needing an enquiring mind, rather than clear and fixed guidelines. Acknowledgement of ethical uneasiness and open-ended reflexivity are indispensable to constitute a morally good research practice.