The National Institute for Health and Clinical Excellence (hereafter NICE) was created in 1998 to give guidance on which treatments should be provided by the British National Health Service, and to whom. So it has a crucial role as an agent of distributive justice. In this paper I argue that it is failing to adequately explain and justify its decisions in the public arena, particularly in terms of distributive justice; and that this weakens its legitimacy, to the detriment of the (...) National Health Service as a whole. I argue that this failure arises from the fact that NICE works within the frameworks of positivist science and liberal ethics, largely to the exclusion of other perspectives. This narrowness of view prevents NICE from properly connecting with the range of moral concerns represented in the population. I argue for NICE’s deliberations to become more inclusive, both in terms of epistemology, and also in terms of ethical perspectives. And I suggest a range of perspectives that could usefully be included. Finally I offer a framework of structures, philosophies and discussion process that will enable competing perspectives to be debated fairly and productively in this process. (shrink)

Human embryos produced in labs since the 1970s have generated layers of uncertainty for law and policy: ontological, moral, and administrative. Ontologically, these lab-made entities fall into a gray zone between life and not-yet-life. Should in vitro embryos be treated as inanimate matter, like abandoned postsurgical tissue, or as private property? Morally, should they exist largely outside of state control in the zone of free reproductive choice or should they be regarded as autonomous human lives and thus entitled to constitutional (...) protection like full-fledged citizens? Administratively, if they deserve protection, what institutional and policy mechanisms are best suited to carrying out the necessary oversight? Using a method termed comparative problematization, this article traces divergent answers to these questions produced in three countries—the United States, United Kingdom, and Germany—across the last twenty-five years. Comparison reveals distinct bioconstitutional foundations that give rise to systematically different understandings of each state’s responsibilities toward human life and hence its particular treatment of claims on behalf of embryonic lives. (shrink)

Over recent years, science and technology have been reassessed increasingly in ethical terms. Particularly for life science governance, ethics has become the dominant discourse. In the course of this ‘‘ethical turn’’ national ethics councils were set up throughout Europe and in the United States to advice politics in ethically controversial issues such as stem cell research and genetic testing. Ethics experts have become subject to traditional warnings against expertocracy: they are suspected to unduly influence political decision-making. However, any reliable ethics (...) expertise has to reflect societal disagreements in moral issues. Therefore, expert dissent is a normal feature of legitimate ethics expertise. Based on theoretical considerations we argue that in principle, expert dissent does not cause problems for political legitimacy; rather, it enhances the salience of politics: obviously decisions on ethical issues cannot be taken on the basis of expert knowledge alone. We therefore conclude that expert dissent, not consent, supports politics. Focussing on Germany and Austria, we show how politics deal with expert dissent in practice. While in Germany politics acknowledge dissent and use it to foster a fundamental political debate, Austrian politics attribute authoritative power to ethics expertise and try to construct an overall consensus. This illustrates how the drawing of boundaries between politic and expertise differs. (shrink)