The Basic Structure Model of Research Stakeholder Obligations
Dr Danielle M. Wenner, Department of Philosophy, Associate Director, Center for Ethics and Policy, Carnegie Mellon University
Wednesday, 27 February 2019, 11am to 12.30pm
Ethox and the Wellcome Centre for Ethics and Humanities are based at the Big Data Institute, University of Oxford, Li Ka Shing Centre for Health Information and Discovery, Old Road Campus, Oxford OX3 7FZ. The talk will be held in seminar room 1.
abstract
Much debate about the so-called “social value requirement” for clinical research is predicated on a model of research stakeholder obligations that conceives research as primarily a private transaction between individuals. I argue that in fact clinical research is one component of an institutional structure governing the health systems in which individuals participate – an institutional structure from which they cannot opt out and which will have deep and lasting impacts on their life prospects. As such, stakeholders in the research enterprise have obligations not only to those with whom they directly interact as sponsors, investigators, and participants, but also to all of those who are governed by the institutional structure of which clinical research is a central part and whose lives it aims to fundamentally impact. Importantly, those obligations are grounded in obligations of justice and not in the ethics of free and fair transactions, implying that members of society have a claim to health research priority-setting motivated (primarily?) by the demands of justice. I go on to explore some of the implications of this view.