"That was an ethical moment" - towards a Deluezian approach to the ethics of data sharing

Event Name "That was an ethical moment" - towards a Deluezian approach to the ethics of data sharing
Start Date 4th Mar 2014 12:30pm
End Date 4th Mar 2014 1:30pm
Duration 1 hour

Open to all.

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Date: 4th March 2014, 12.30-1.30pm, Ken Mason Suite, School of Law, University of Edinburgh


Speaker: Dr Cate Heeney, Research Fellow, Science, Technology and Innovation Studies, University of Edinburgh


Title: "That was an ethical moment" - towards a Deluezian approach to the ethics of data sharing            

Abstract: Moves to more open forms of data sharing such as the Wellcome Trust Case Control Consortium model and the use of repositories including UK biobank have raised debate on the ethical legal and social consequences of such changes. A literature arising in the last decade from the overlapping fields of medical sociology and STS has grappled with how ethics are enacted in biomedical practices.   In considering how ethics and practice interact I will cover similar ground to a sociology of bioethics (Haimes), however with different conclusions about the role of ethics in practice and about our role as scholars with an interest in ethics. I will draw on Actor Network Theory and specifically the notion of translation (Callon) and Latours advice to follow controversy (2005). These concepts enable the exploration of how discourse is signaling beyond the here and now to mobilise support for what is not, this is precisely why it is a useful tool to consider the role of the moral in relation to ethics and practice. This approach offers a way to engage with those aspects of ethics which are important to the practitioners negotiating the formal ethics aspects of the governance frameworks and practice.  However, I will look at the how a Deluezian reading can offer alternatives to current approaches to the study of ethics and practice coming from sociology and to a lesser extent empirical ethics.  Deleuze suggests that actual arrangements are always subject to evident or underlying change. This is an important point for those who wish to engage with as well as describe ethics practices and would to some extent satisfy those such as Latour who would avoid coming to the field with too many assumptions be they contextual or of the abstract moral kind.   In order to explicate this approach the paper engages with interview data gathered from 49 members of biomedical research community in the UK whose practices involved with biobanks between 2006- 2008.