The Dutch law states that a physician may perform euthanasia according to a written advance euthanasia directive when a patient is incompetent as long as all legal criteria of due care are met. This may also hold for patients with advanced dementia. We investigated the differing opinions of physicians and members of the general public on the acceptability of euthanasia in patients with advanced dementia.

BackgroundThe rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social (...) licence for achieving such ethical governance.Main textWe performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search resulted in nine publications. Our conceptual analysis aims to clarify how societal permission can be granted to health research projects which rely upon the reuse and/or linkage of health data. These activities may be morally demanding. For these types of activities, a moral legitimation, beyond the limits of law, may need to be sought in order to preserve trust. Our analysis indicates that a social licence encourages us to recognise a broad range of stakeholder interests and perspectives in data-intensive health research. This is especially true for patients contributing data. Incorporating such a practice paves the way towards an ethical governance, based upon trust. Public engagement that involves patients from the start is called for to strengthen this social licence.ConclusionsThere are several merits to using the concept of social licence as a guideline for ethical governance. Firstly, it fits the novel scale of data-related risks; secondly, it focuses attention on trustworthiness; and finally, it offers co-creation as a way forward. Greater trust can be achieved in the governance of data-intensive health research by highlighting strategic dialogue with both patients contributing the data, and the public in general. This should ultimately contribute to a more ethical practice of governance. (shrink)

My object in this paper is to suggest a few reflections on some themes in Bentham's work which others as well as I have noted, without perhaps developing them as fully as might with advantage be done. There will be nothing like full development in the limited compass of what is said here, but what is said may at least indicate possible directions for further exploration. The greater part of the paper will be concerned with the notion of natural authority; (...) but I want to begin by taking a broader, though no doubt rather superficial, view of the role in Bentham's thinking of the concepts of ‘nature’ and ‘the natural’. (shrink)

The object of this article is to examine, with the work of Jeremy Bentham as the principal example, one strand in the complex pattern of European social theory during the second half of the eighteenth century. This was of course the period not only of the American and French revolutions, but of the culmination of the movements of thought constituting what we know as the Enlightenment. Like all great historical episodes, the Enlightenment was both the fulfilment of long-established processes and (...) the inauguration of new processes of which the fulfilment lay in the future. Thus the seminal ideas of seventeenth-century rationalism realized and perhaps exhausted their potentialities in the eighteenth-century Enlightenment. The ideas with which this article is concerned, however—conveniently grouped and labelled as the ideas of utilitarianism—only began to achieve systematic development in these later decades of the eighteenth century. Within that period—during the first half and more of Bentham's long life—attempts to apply those ideas to the solution of social problems met largely with failure and frustration. Yet unrealized potentialities remained, the realization of which was reserved for a time when the world of the philosophes no longer existed. The movements for social and political reform which have played so large a part in modern history since the French Revolution may be judged in widely differing ways; but whatever the verdict, these movements surely cannot be understood without due consideration of that part of their origins which lies in eighteenth-century utilitarianism. (shrink)

The full range of Bentham's engagement with Blackstone's view of law is beyond the scope of a single article. Yet it is important to recognize at the outset, even in a more restricted enquiry into the matter, that the engagement, begun when Bentham, not quite sixteen years of age, started to attend Blackstone's Oxford lectures, was indeed a lifelong affair. Whatever Bentham had in mind when, at the age of eighty, in 1828, he began to write a work entitled ‘A (...) familar view of Blackstone: or say Blackstone familiarized’, the manuscripts at least suffice to prove that ‘Our Author’ was still in the forefront of his mind at that octogenarian but still indefatigably active stage of his career. Every aspect of Bentham's multifarious intellectual activity over the intervening decades had been touched in some measure by his response to Blackstone's ideas. It still seems true to say what was said a dozen years ago: It would be an exaggeration to say that Bentham elaborated his own conception of law by way of a constant and conscious dialectic with the views of Blackstone. But it would be an exaggeration for which the evidence would afford some excuse. (shrink)