Although the therapeutic misconception (TM) has been well described over a period of approximately 20 years, there has been disagreement about its implications for informed consent to research. In this paper we review some of the history and debate over the ethical implications of TM but also bring a new perspective to those debates. Drawing upon our experience of working in the context of translational research for rare childhood diseases such as Duchenne muscular dystrophy, we consider the ethical and legal (...) implications of the TM for parental consent to research. In this situation, it is potentially the parent who is vulnerable to TM. In our analysis we not only consider the context of informed consent for research but also the wider environment in which the value of research is promoted, more broadly through the media but also more specifically through the communication strategies of patient organizations. All dissemination about developments in research for health runs the risk of portraying an overly optimistic view of the promise of biotechnological solutions and has the potential to encourage a ‘collective’ TM. In this paper we consider the challenge that TM presents to parents as well as explore the ethical and legal responsibilities of researchers to ensure an appropriately informed consent: compatible with a hopeful disposition of parents who consent for the their children whilst avoiding a blind and misleading optimism. (shrink)

This interdisciplinary collection presents valuable discourse and reflection on the nature of a good death. Bringing together a leading judge and other legal scholars, philosophers, social scientists, practitioners and parents who present varying accounts of a good death, the chapters draw from personal experience as well as policy, practice and academic analysis.Covering themes such as patients' rights to determine their own good death, considering their best interests when communication becomes difficult and the role and responsibilities of health professionals, the book (...) outlines how ethical healthcare might be achieved when dealing with assisted suicide by organizations and how end of life services in general might be improved. It will be of interest to students and academics working the area of medical law and ethics as well as health professionals and policy-makers. (shrink)

Guidelines provided by the Director of Public Prosecutions suggest that anyone assisting another to commit suicide in England and Wales, or elsewhere, will not be prosecuted provided there are no self-seeking motives and no active encouragement. This reflects the position in Switzerland. There, however, no difference is made between assistance and inducement. In addition, the Swiss approach makes it possible to establish organisations to assist the suicides of both their citizens and foreign visitors. It should not be assumed that this (...) approach is without controversy in Switzerland. Proposals for reform continue to be debated there, not least because of the concern about some of the actual practices of certain end-of-life organisations. It is likely that a few English citizens will continue to avail themselves of these services in Switzerland if they cannot find the help they require here. This paper explores the legitimacy of the current restrictive position adopted towards assisted suicide in England. It argues that the provisions within the guidelines prohibiting organisations that assist suicides, leaves some without the help they need. While legislative decriminalisation of assisted suicide and the establishment of state-sponsored suicide centres would represent the most permissive regime, this paper proposes that this would be a step too far. The preference here is for decriminalisation but adopting a ‘middle way’ between the two extremes: the more permissive approach provided by the ‘Swiss model’ is one that could be employed here, albeit within a more robust regulatory regime. (shrink)