Journal of Bioethical Inquiry, Volume 6, Number 3 (September 2009)
Guest Editors: Ian Kerridge, Paul Komesaroff, Mal Parker, and Elizabeth Peter

Editorials

Editorial

Kate Cregan

Letters to the Editor

Research Involving Children: Direct Benefit or Social Value?

Carlo Petrini

Recent Developments

Recent Developments

John Coggon, Cameron Stewart, and Laura Williamson

Symposium

New Perspectives on the End of Life

Ian Kerridge, Paul A. Komesaroff, Malcolm Parker, and Elizabeth Peter

Two Decades of Research on Euthanasia From the Netherlands: What Have We Learnt and What Questions Remain?

Judith A. C. Rietjens, Paul J. van der Maas, Bregje D. Onwuteaka-Philipsen, Johannes J. M. van Delden, and Agnes van der Heide
Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life.

Dealing Death and Retrieving Organs

James Lindemann Nelson
It has recently been argued by Miller and Truog (2008) that, while procuring vital organs from transplant donors is typically the cause of their deaths, this violation of the requirement that donors be dead prior to the removal of their organs is not a cause for moral concern. In general terms, I endorse this heterodox conclusion, but for different and, as I think, more powerful reasons. I end by arguing that, even if it is agreed that retrieval of vital organs causes the deaths of those who provide them, that does not pose any new substantive difficulties for efforts to justify “opt-out” organ procurement systems.

The Last Hellos

Les Murray

Dealing With Death in the Jewish Legal Tradition

Daniel B. Sinclair
The main theme of the article is the tension between the obligation to preserve life, and the value of timely death. This tension is resolved by distinguishing between precipitating death, which is prohibited, and merely removing an impediment to it, which is permitted. In contemporary Jewish law, a distinction is made between therapy, which may be discontinued, and life-support, which must be maintained until the establishment of death. Another theme is that of “soft” patient autonomy, and its role in dealing with the dying in both traditional Jewish law and Israel’s Terminal Patient Law, 2005. Preventing suffering in relation to a dying person, and praying for his or her death are also discussed in the article.

The Traditional Account of Ethics and Law at the End of Life—and Its Discontents

Roger S. Magnusson
For the past 30 years, the Melbourne urologist Dr Rodney Syme has quietly—and more recently, not-so-quietly—assisted terminally and permanently ill people to die. This paper draws on Syme’s recent book, A Good Death: An Argument for Voluntary Euthanasia, to identify and to reflect on some important challenges to what I outline as the traditional account of law, ethics, and end of life decisions. Among the challenges Syme makes to the traditional view is his argument that physicians’ intentions are frail and unfairly expose physicians to moral and legal censure. Secondly, Syme argues that physician-assisted dying (PAD) should be framed as a form of palliative care, not as a kind of safety-chute for when palliative care fails. Thirdly, Syme himself is a rare breed: a dissident doctor who has opened himself up for scrutiny and criticism, by reflecting publicly on his experiences at the edge of the law. Syme’s career illustrates that prohibition, just like legalization, is a social policy that carries social consequences. The paper acknowledges the variability and idiosyncratic nature of extra-legal physician-assisted dying, and argues that the best way forward is to attempt to weigh the social consequences of both policies. Advocates and opponents of PAD should recognize that both prohibition and legalization involve trade-offs and impose possible costs on patients and on society.

My Death

Kevin Hart

The Suicide Tourist Trap: Compromise Across Boundaries

Richard Huxtable
Amongst the latest, and ever-changing, pathways of death and dying, “suicide tourism” presents distinctive ethical, legal and practical challenges. The international media report that citizens from across the world are travelling or seeking to travel to Switzerland, where they hope to be helped to die. In this paper I aim to explore three issues associated with this phenomenon: how to define “suicide tourism” and “assisted suicide tourism,” in which the suicidal individual is helped to travel to take up the option of assisted dying; the (il)legality of assisted suicide tourism, particularly in the English legal system where there has been considerable recent activity; and the ethical dimensions of the practice. I will suggest that the suicide tourist—and specifically any accomplice thereof—risks springing a legal trap, but that there is good reason to prefer a more tolerant policy, premised on compromise and ethical pluralism.

End-of-Life Decisions and Moral Psychology: Killing, Letting Die, Intention, and Foresight

Charles Douglas
In contemplating any life and death moral dilemma, one is often struck by the possible importance of two distinctions; the distinction between killing and “letting die,” and the distinction between an intentional killing and an action aimed at some other outcome that causes death as a foreseen but unintended “side-effect.” Many feel intuitively that these distinctions are morally significant, but attempts to explain why this might be so have been unconvincing. In this paper, I explore the problem from an explicitly consequentialist point of view. I first review and endorse the arguments that the distinctions cannot be drawn with perfect clarity, and that they do not have the kind of fundamental significance required to defend an absolute prohibition on killing. I go on to argue that the distinctions are nonetheless important. A complete consequentialist account of morality must include a consideration of our need and ability to construct and follow rules; our instincts about these rules; and the consequences (to the agent and to others) that might follow if the agent breaks a good general rule, particularly if this involves acting contrary to moral instinct. With this perspective, I suggest that the distinctions between killing and letting die and between intending and foreseeing do have moral relevance, especially for those involved in the care of the sick and dying.

The Map

Kevin Hart

Original Research

Policy Design for Human Embryo Research in Canada: An Analysis (Part 2 of 2)

Françoise Baylis and Matthew Herder
This article is the second in a two-part review of policy design for human embryo research in Canada. In the first article in 6(1) of the JBI, we explain how this area of research is circumscribed by law promulgated by the federal Parliament and by guidelines adopted by the Tri-Agencies, and we provide a chronological description of relevant policy initiatives and outcomes related to these two policy instruments, with particular attention to the repeated efforts at public consultation. This second article analyses the history of policy design for human embryo research in Canada, applying a typology of modes of public consultation developed by Eric Montpetit to better understand the various episodes of policy design and their corresponding outcomes. On this basis, we suggest that the degree to which the views of Canadian residents and citizens on human embryo research have been solicited as part of the policy-making process has diminished significantly over time. We also suggest that this diminished participation is likely to continue given the presence of powerful interest groups and policy communities “speaking for” Canadians. This raises interesting questions about the legitimacy of future policy initiatives for human embryo research in Canada.

Bioethics: An Export Product? Reflections on Hands-On Involvement in Exploring the “External” Validity of International Bioethical Declarations

Mairi Levitt and Hub Zwart
As the technosciences, including genomics, develop into a global phenomenon, the question inevitably emerges whether and to what extent bioethics can and should become a globalised phenomenon as well. Could we somehow articulate a set of core principles or values that ought to be respected worldwide and that could serve as a universal guide or blueprint for bioethical regulations for embedding biotechnologies in various countries? This article considers one universal declaration, the UNESCO Declaration on Bioethics and Human Rights (2005a). General criticisms made in a recent special issue of Developing World Bioethics are that the concepts used in the Declaration are too general and vague to generate real commitment; that the so-called universal values are not universal; and, that UNESCO should not be engaged in producing such declarations which are the domain of professional bioethicists. This article considers these and other criticisms in detail and presents an example of an event in which the Declaration was used: the request by the Republic of Sakha, in Siberia, for a UNESCO delegation to advise on the initiation of a bioethics programme. The Declaration was intended to provide an adequate “framework of principles and procedures to guide states in the formulation of their legislation, policies and other instruments in the field of bioethics” (article 2a). The Declaration was produced, and principles agreed upon, in an interactive and deliberative manner with world-wide expert participation. We argue that the key issue is not whether the general principles can be exported worldwide (in principle they can), but rather how processes of implementation and institutionalisation should take shape in different social and cultural contexts. In particular, broader publics are not routinely involved in bioethical debate and policy-making processes worldwide.

Parental Authority, Future Autonomy, and Assessing Risks of Predictive Genetic Testing in Minors

A. Boyce and P. Borry
The debate over the genetic testing of minors has developed into a major bioethical topic. Although several controversial questions remain unanswered, a degree of consensus has been reached regarding the policies on genetic testing of minors. Recently, several commentators have suggested that these policies are overly restrictive, too narrow in focus, and even in conflict with the limited empirical evidence that exists on this issue. We respond to these arguments in this paper, by first offering a clarification of three key concepts—autonomy of the minor, future autonomy, and parental authority—which must be disentangled. We then respond to the arguments by noting the uncertainty of the value of predictive genetic information, and by assessing the psychosocial risks still involved in genetic testing of minors, which are also largely unknown. We conclude that the current consensus position is justified at this stage, in light of the predictions of harm resulting from genetic testing of minors that have not been adequately proved to be unwarranted.

Reviews

Conflicts of Conscience in Health Care: An Institutional Compromise

Robert D. Orr

Physicians at War: The Dual-Loyalties Challenge

Jason Gatliff

The Final Inch

Yash Paul

La Americana

J. S. Swindell

Case Studies

Republication: Distributing Scarce Oseltamivir in an Avian Flu Pandemic

Dan Brock

In That Case: Environment

Rob Irvine