Garrath Williams

This article considers how we should frame the ethical issues raised by current proposals for large-scale genebanks with on-going links to medical and lifestyle data, such as the Wellcome Trust and Medical Research Council's 'UK Biobank'. As recent scandals such as Alder Hey have emphasised, there are complex issues concerning the informed consent of donors that need to be carefully considered. However, we believe that a preoccupation with informed consent obscures important questions about the purposes to which such collections are put, not least that they may be only haphazardly used for research —an end that would not fairly reflect the original altruistic motivation of donors, and the trust they must invest. We therefore argue that custodians of such databases take on a weighty pro-active duty, to encourage public debate about the ends of such collections and to sponsor research that reflects publicly agreed priorities and provides public benefits.

Hannah Arendt is one of the few philosophers to examine the dynamics of political action at length. Intriguingly, she emphasises the disclosure of who the actor is as a specific distinction of political action. This emphasis is connected with some long-standing worries about Arendt’s account that centre on its apparent unconcern for political responsibility. In this paper, I argue that Arendt’s emphasis on disclosure actually harbours a profound concern with responsibility. I do so by examining three questions. The main part of the paper focuses on how disclosure is bound up with political actors’ attempts to act with one another. It asks: what would it be for an actor to evade disclosure? And: what is involved in an actor acknowledging the fact of disclosure? – Looking at the matter negatively, attempts to evade disclosure and its implications lead to irresponsibility. Positively, for the actor to accept disclosure is to see herself as bound to her fellow actors and audience by relations of joint action and mutual accountability. The conclusion asks a third question: what would it mean for on-lookers to deny the relevance of actors’ disclosure? I argue that Arendt’s historiography – which revolves around stories in which political actors reveal who they are – reflects her conviction that people can and must take responsibility for their world

A brief discussion of means and ends in Arendt's political theory, which considers the following quotation from Arendt's essay, 'What is freedom?': "Political institutions, no matter how well or badly designed, depend for continued existence upon acting men; their conservation is achieved by the same means that brought them into being. Independent existence marks the work of art as a product of making; utter dependence upon further acts to keep it in existence marks the state as a product of action."