Bioethics as an academic discipline comes into public discourse when real life “hard cases” receive media attention. Since cases of this sort increasingly often become the subject of litigation, the forum for debate can be a court of law, with judges as the final arbiters. Judges (unlike philosophers) are obliged to give final and definitive rulings in a constrained time period. Their training is in a type of discourse very different from moral philosophy, though still concerned with right and wrong. (...) This paper explores the differences between the tools and methods used in public legal debate and private academic discourse, and the different nature of the answers they produce. It attempts to suggest some ways in which bioethicists can better understand lawyers’ reasoning in cases of this sort, and how communication between bioethics and law might be improved. (shrink)

This note suggests that, viewed from a feminist perspective, the reforms contained in the Human Fertilisation and Embryology Act 2008 represent a missed opportunity to re-think the appropriate model of regulation to govern fertility treatment and embryology research in the UK. It argues that reform of the legislation was driven largely by the government’s desire to avoid re-igniting controversies over the legal status of the embryo and abortion and to maintain Britain’s position at the forefront of embryo research and related (...) biotechnologies. It also highlights the importance of media debates, which were highly selective, to the reform process, and suggests that in order to inject feminist values into the process of legislative reform, feminists need to become more media savvy. In the short term, it suggests that there is little prospect of a radical re-thinking of the appropriate ethico-legal response to the wide variety of family forms that reproductive technologies potentially enable, much less of considering our ethical obligations to the new forms of embryos that are now permitted by the 2008 Act. In the meantime, however, it argues that these issues provide productive opportunities for feminist legal theorists to address questions that have been erased or obscured in the course of the 2008 reforms. (shrink)

In 2007, the Ethics and Governance Council of the UK Biobank commissioned a Report on ‘Concepts of Public Good and Pubic Interest in Access Policies’. This study considered the Biobank’s role as a ‘public good’ in respect to supporting and promoting health throughout society. However, the conditions under which access by third parties to UK Biobank are justified in the public interest have not been well considered. In this article, I propose to analyse the conditions that should allow such access. (...) My argument develops UK Biobank’s function as a ‘public good’ and in terms of its responsibilities as a public health institution; both to protect the rights of the participants and in having a role in reinforcing public goals. Although these two tasks may conflict, it is possible that resolute opposition to some third-party access demands—if properly justified in terms of a public interest—will be damaging to, rather than protective of, participants’ rights. To illustrate my argument, I consider the appropriate response to an extraordinary public emergency , such as a serious criminal investigation or disaster response, in terms of an ethical access policy. (shrink)

Background No two countries have adopted identical regulatory measures on cloning. Understanding the complexity of these regulatory variations is essential. It highlights the challenges associated with the regulation of a controversial and rapidly evolving area of science and sheds light on a regulatory framework that can accommodate this reality. Methods Using the most reliable information available, we have performed a survey of the regulatory position of thirty countries around the world regarding the creation and use of cloned embryos (see Table (...) 1). We have relied on original and translated legislation, as well as published sources and personal communications. We have examined the regulation of both reproductive cloning (RC) and non-reproductive cloning (NRC). Results While most of the countries studied have enacted national legislation, the absence of legislation in seven of these countries should not be equated with the absence of regulation. Senator Morin was not correct in stating that the majority of recent legislation bans both RC and NRC. Recent regulatory moves are united only with regard to the banning of RC. While NRC is not permitted in seventeen of the countries examined, it could be permitted in up to thirteen countries. Conclusions There is little consensus on the various approaches to cloning laws and policies, and the regulatory position in many countries remains uncertain. (shrink)

The notion of “consent” is frequently referred to as “informed consent” to emphasise the informational component of a valid consent. This article considers aspects of that informational component. One misuse of the language of informed consent is highlighted. Attention is then directed to some features of the situation in which consent would not have been offered had certain information been disclosed. It is argued that whether or not such consent is treated as sufficiently informed must, from a moral point of (...) view, take account of four conditions. When these are applied to the operation of consent in relation to criminal responsibility for HIV transmission, the approach in some recent cases is shown to be morally questionable. (shrink)

This paper introduces the controversy surrounding active voluntary euthanasia and describes the legal position on euthanasia and assisted suicide in the UK. Findings from studies of the nurses' attitudes to euthanasia from the national and international literature are reviewed. There are acknowledged difficulties in carrying out research into attitudes to euthanasia and hence the review of findings from the published studies is followed by a methodological review. This methodological review examines the research design and data collection methods used in the (...) published studies, problems with understanding definitions of euthanasia and the measurement of attitudes. The paper concludes with a discussion of how research in this area may influence nursing practice. (shrink)

This paper argues that, in a community of rights, the prima facie responsibilities of researchers to attend to the ancillary-care needs of their participants would be determined by a four-stage test . This test, it is suggested, sets a standard for common law courts that are invited to recognize the ancillary-care responsibilities of researchers, whether as a matter of contract or tort law.

With the case of Belgium as a negative example, this paper will evaluate the legitimacy of using mentally incompetents as organ sources. The first section examines the underlying moral dilemma that results from the necessity of balancing the principle of respect for persons with the obligation to help people in desperate need. We argue for the rejection of a radical utilitarian approach but also question the appropriateness of a categorical prohibition. Section two aims to strike a fair balance between the (...) competing interests at stake and to define the conditions under which organ harvest from mentally incompetents might be morally acceptable. To this end, we morally assess the main requirements that have been put forward to allow organ removal from incompetent donors. We conclude that the current Belgian legislation is far too permissive and that national regulations that do not permit the harvest of non-regenerable organs from mentally incompetents in exceptional circumstances are too restrictive. On the basis of this discussion, we propose a number of guiding principles for decision-making in this area. (shrink)

A ‘Ulysses arrangement’ (UA) is an agreement where a patient may arrange for psychiatric treatment or non-treatment to occur at a later stage when she expects to change her mind. In this article, I focus on ‘competence-insensitive’ UAs, which raise the question of the permissibility of overriding the patient’s subsequent decisionally competent change of mind on the authority of the patient’s own prior agreement. In “The Ethical Justification for Ulysses Arrangements”, I consider sceptical and supportive arguments concerning competence-insensitive UAs, and (...) argue that there are compelling reasons to give such UAs serious consideration. In “Decisional Competence and Legal Capacity in UAs”, I examine the nature of decisional competence and legal capacity as they arise in UAs, an issue neglected by previous research. Using the distinctions which emerge, I then identify the legal structure of a competence-insensitive UA in terms of the types of legal capacity it embodies and go on to explain how types of legal capacity might be shared between the patient and a trusted other to offer support to the patient in the creation and implementation of a competence-insensitive UA. This is significant because it suggests possibilities for building patient support mechanisms into models of legal UAs, which has not addressed in the literature to date. Drawing on this, in “Using Insights from the Competence/Capacity Distinction to Enhance Patient Support in UAs”, I offer two possible models to operationalize competence-insensitive UAs in law that allow for varying degrees of patient support through the involvement of a trusted other. Finally, I outline some potential obstacles implementing these models would face and highlight areas for further research. (shrink)

Background No two countries have adopted identical regulatory measures on cloning. Understanding the complexity of these regulatory variations is essential. It highlights the challenges associated with the regulation of a controversial and rapidly evolving area of science and sheds light on a regulatory framework that can accommodate this reality. Methods Using the most reliable information available, we have performed a survey of the regulatory position of thirty countries around the world regarding the creation and use of cloned embryos. We have (...) relied on original and translated legislation, as well as published sources and personal communications. We have examined the regulation of both reproductive cloning and non-reproductive cloning. Results While most of the countries studied have enacted national legislation, the absence of legislation in seven of these countries should not be equated with the absence of regulation. Senator Morin was not correct in stating that the majority of recent legislation bans both RC and NRC. Recent regulatory moves are united only with regard to the banning of RC. While NRC is not permitted in seventeen of the countries examined, it could be permitted in up to thirteen countries. Conclusions There is little consensus on the various approaches to cloning laws and policies, and the regulatory position in many countries remains uncertain. (shrink)

Neither the English courts nor the National Health Service (NHS) have been immune to the modern mantra of patient choice. This article examines whether beneath the rhetoric any form of real choice is endorsed either in law or in NHS policy. I explore the case law on ‘consent’, look at choice within the NHS and highlight the dilemmas that a mismatch of language and practice poses for clinicians. Given the variance in interpretation and lack of consistency for the individual patient (...) I argue for a semantic change that obviates the use of ‘choice’, focussing instead on the options for treatment that are available and accessible, with due acknowledgement of individual patient preferences, without raising unfettered and false expectations. (shrink)

It is axiomatic that the first responsibility of researchers, whether they are working in the developed or the developing world, is to do no harm to those who participate in their studies or trials. However, on neither side of the Atlantic is there any such settled view with regard to the responsibility of researchers to attend to the ancillary-care needs of their participants – that is, a responsibility to advise or assist participants who have medical condition X in circumstances where (...) the research concerns medical condition Y, and the research did not contribute to the presence of condition X in participants, nor did the having of condition X contribute to the research. Consider, for example, the following hypothetical posed by Leah Belsky and Henry Richardson:Researchers testing a new treatment for tuberculosis in a developing country discover some patients have HIV infection. Do they have a responsibility to provide antiretroviral drugs? (shrink)

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)

The law of England and Wales provides that an adult with capacity has the right to refuse medical treatment both contemporaneously and in an advance refusal. Legislation separates general advance refusals of treatment from advance refusals of life-sustaining treatment. The law, outlined in ss.24 to 26 of the Mental Capacity Act 2005, is stricter for creation of the latter. These sections brought with them a new age of interests by purporting to elevate individual autonomy as the primary concern. Beginning with (...) the classical tale of Odysseus and a general discussion of the value to be found in a law seeking to preserve individual autonomy, this thesis seeks to act as a critique of the current enactment in practice. The provisions are already under-used and under-applied; without change, they may never reach the stage where they are ethically and practically viable. It is argued that the advance refusals provisions are not taking full effect due to a combination of lacking moral grounding and general dismissal of key ethical dilemmas at the forefront of application. Building on this, the moral basis for this thesis is found in Alan Gewirth’s Principle of Generic Consistency (PGC) which links directly with the general application of human rights. The PGC becomes a compass for determining how best to treat persons when addressing the three most prominent challenges faced by the 2005 Act which are: the debate between the conferred right of autonomy versus the right to life; the issue of personhood; and, the personal identity problem. Ultimately, unless framework provisions are strengthened, and the Mental Capacity Act 2005 is rethought in light of prominent ethical, legal and social considerations, the constraints of the Act on paper will continue to suppress the important underlying values promulgating individual autonomy. (shrink)