On strange ground: biomedical transformation, narrative vulnerability and identity repair
with Jackie Leach Scully, Professor of Social Ethics and Bioethics, Policy, Ethics and Life Sciences Research Centre, Newcastle University, UK
Vulnerability is generally understood in terms of harmful states or events that block people from flourishing, and that particular individuals or groups are disproportionately likely to experience. So a social class or a gender may, for a variety of reasons, be more vulnerable to certain diseases; single parents more vulnerable to poverty; disabled people vulnerable to hate crimes and abuse, and so on. As these examples show, the primary concern is with vulnerabilities that present as material disadvantages of different kinds; we focus on the practical politics of how these vulnerabilities arise, and how they can be mitigated.
In this paper I will examine a less obvious source of vulnerability, and the moral responsibilities that arise as a consequence. What I have called narrative vulnerability is generated by the absence or inadequacy of available cultural resources (such as stories, vocabulary, descriptions, and the ascription of epistemic value) to enable a person’s experience to be integrated appropriately into the narrative of her life. Feminist ethicist Hilde Lindemann has argued that the lack of a positive life narrative can lead to ‘damaged identities’; I propose this as a form of vulnerability, because it renders those affected less likely to flourish.
While previous work by Lindemann and others has focused on identities that are recognized but disvalued, an equally harmful form of narrative vulnerability exists for experiences that are socially and culturally novel, such as new biomedical interventions. Using the experience of organ transplantation as a case study, I will outline the concept and consequences of this form of vulnerability, and suggest that the state of narrative vulnerability is neither morally trivial nor simple to restore.
Biography of Professor Jackie Leach Scully
My first degree was in biochemistry, and my PhD in cellular pathology. I held research fellowships in oncology and neurobiology at research institutes in Switzerland, before moving to help establish the first interdisciplinary unit for bioethics at the University of Basel. Over the next few years I followed my developing research interests in genetic and reproductive medicine, disability and embodiment, and in feminist approaches to bioethics. In 2006 I returned to the UK to join the Policy, Ethics and Life Sciences Research Centre (PEALS) at Newcastle University, and 2016 became Executive Director.