Public reasoning about voluntary assisted dying: An analysis of submissions to the Queensland Parliament,Australia

The use of voluntary assisted dying as an end‐of‐life option has stimulated concerns and debates over the past decades. Although public attitudes towards voluntary assisted dying (including euthanasia and physician‐assisted suicide) are well researched, there has been relatively little study of the different reasons, normative reasoning and rhetorical strategies that people invoke in supporting or contesting voluntary assisted dying in everyday life. Using a mix of computational textual mining techniques, keyword study and qualitative thematic coding to analyse public submissions to a parliamentary inquiry into voluntary assisted dying in Australia, this study critically examines the different reasons, normative reasoning and rhetorical strategies that people invoke in supporting or contesting voluntary assisted dying in everyday life. The analysis identified complex and potentially contradictory ethical principles being invoked on both sides of the debate. These findings deepen our understanding of the moral basis of public reasoning about end‐of‐life matters and will help to inform future discussions on policy and law reform. The findings underscore the importance of sound normative reasoning and the use of caution when interpreting opinion polls to inform policy.     

Protecting Future Children from In‐Utero Harm

The actions of pregnant women can cause harm to their future children. However, even if the possible harm is serious and likely to occur, the law will generally not intervene. A pregnant woman is an autonomous person who is entitled to make her own decisions. A fetus in‐utero has no legal right to protection. In striking contrast, the child, if born alive, may sue for injury in‐utero; and the child is entitled to be protected by being removed from her parents if necessary for her protection. Indeed, there is a legal obligation for health professionals to report suspected harm, and for authorities to protect the child's wellbeing. We ask whether such contradictory responses are justified. Should the law intervene where a pregnant woman's actions risk serious and preventable fetal injury? The argument for legal intervention to protect a fetus is sometimes linked to the concept of ‘fetal personhood’ and the moral status of the fetus. In this article we will suggest that even if the fetus is not regarded as a separate person, and does not have the legal or moral status of a child, indeed, even if the fetus is regarded as having no legal or moral status, there is an ethical and legal case for intervening to prevent serious harm to a future child. We examine the arguments for and against intervention on behalf of the future child, drawing on the example of excessive maternal alcohol intake.     

On the Moral Acceptability of Physician‐Assisted Dying for Non‐Autonomous Psychiatric Patients

Several authors have recently suggested that the suffering caused by mental illness could provide moral grounds for physician‐assisted dying. Yet they typically require that psychiatric‐assisted dying could come to question in the cases of autonomous, or rational, psychiatric patients only. Given that also non‐autonomous psychiatric patients can sometimes suffer unbearably, this limitation appears questionable. In this article, I maintain that restricting psychiatric‐assisted dying to autonomous, or rational, psychiatric patients would not be compatible with endorsing certain end‐of‐life practices commonly accepted in current medical ethics and law, practices often referred to as ‘passive euthanasia’.     

“Capacity”, “best interests”, “will and preferences” and the UN Convention on the Rights of Persons with Disabilities

The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) is the most up‐to‐date international legal instrument concerning the rights of persons with disabilities. Such persons are taken to include those with serious mental disorders. According to an authoritative interpretation of a crucial Article (Article 12 ‐ Equal recognition before the law) by the UN CRPD Committee, involuntary detention and treatment of people with mental health disabilities are prohibited under the Convention. Both conventional mental health law and “capacity‐based” law are deemed to violate the Convention. However, some other UN bodies are not in full agreement (for example, the UN Human Rights Committee and the Subcommittee on Prevention of Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment), while others are less explicitly absolutist (for example, the Human Rights Council). Furthermore, strong criticisms of the position of the CRPD Committee have been mounted from a number of academic quarters. These criticisms center on whether the role of a person's ability to make a decision can be ignored, no matter the circumstances. Much of the above debate turns on the concept of “legal capacity” and the now often‐repeated precept that one must always respect the “will and preferences” of the person with a disability. However, “will and preferences” remains undefined. In this paper, I offer an analysis of “will and preferences” that can clarify interventions that may be acceptable or non‐acceptable under the terms of the UN Convention.     

MORAL FICTIONS AND MEDICAL ETHICS

Conventional medical ethics and the law draw a bright line distinguishing the permitted practice of withdrawing life‐sustaining treatment from the forbidden practice of active euthanasia by means of a lethal injection. When clinicians justifiably withdraw life‐sustaining treatment, they allow patients to die but do not cause, intend, or have moral responsibility for, the patient's death. In contrast, physicians unjustifiably kill patients whenever they intentionally administer a lethal dose of medication. We argue that the differential moral assessment of these two practices is based on a series of moral fictions – motivated false beliefs that erroneously characterize withdrawing life‐sustaining treatment in order to bring accepted end‐of‐life practices in line with the prevailing moral norm that doctors must never kill patients. When these moral fictions are exposed, it becomes apparent that conventional medical ethics relating to end‐of‐life decisions is radically mistaken.     

MORAL FICTION OR MORAL FACT? THE DISTINCTION BETWEEN DOING AND ALLOWING IN MEDICAL ETHICS

Opponents of physician‐assisted suicide (PAS) maintain that physician withdrawal‐of‐life‐sustaining‐treatment cannot be morally equated to voluntary active euthanasia. PAS opponents generally distinguish these two kinds of act by positing a possible moral distinction between killing and allowing‐to‐die, ceteris paribus. While that distinction continues to be widely accepted in the public discourse, it has been more controversial among philosophers. Some ethicist PAS advocates are so certain that the distinction is invalid that they describe PAS opponents who hold to the distinction as in the grip of ‘moral fictions’. The author contends that such a diagnosis is too hasty. The possibility of a moral distinction between active euthanasia and allowing‐to‐die has not been closed off by the argumentative strategies employed by these PAS advocates, including the contrasting cases strategy and the assimilation of doing and allowing to a common sense notion of causation. The philosophical debate over the doing/allowing distinction remains inconclusive, but physicians and others who rely upon that distinction in thinking about the ethics of end‐of‐life care need not give up on it in response to these arguments.     

BRAIN DEATH IN ISLAMIC ETHICO‐LEGAL DELIBERATION: CHALLENGES FOR APPLIED ISLAMIC BIOETHICS

Since the 1980s, Islamic scholars and medical experts have used the tools of Islamic law to formulate ethico‐legal opinions on brain death. These assessments have varied in their determinations and remain controversial. Some juridical councils such as the Organization of Islamic Conferences' Islamic Fiqh Academy (OIC‐IFA) equate brain death with cardiopulmonary death, while others such as the Islamic Organization of Medical Sciences (IOMS) analogize brain death to an intermediate state between life and death. Still other councils have repudiated the notion entirely. Similarly, the ethico‐legal assessments are not uniform in their acceptance of brain‐stem or whole‐brain criteria for death, and consequently their conceptualizations of, brain death. Within the medical literature, and in the statements of Muslim medical professional societies, brain death has been viewed as sanctioned by Islamic law with experts citing the aforementioned rulings. Furthermore, health policies around organ transplantation and end‐of‐life care within the Muslim world have been crafted with consideration of these representative religious determinations made by transnational, legally‐inclusive, and multidisciplinary councils. The determinations of these councils also have bearing upon Muslim clinicians and patients who encounter the challenges of brain death at the bedside. For those searching for ‘Islamically‐sanctioned’ responses that can inform their practice, both the OIC‐IFA and IOMS verdicts have palpable gaps in their assessments and remain clinically ambiguous. In this paper we analyze these verdicts from the perspective of applied Islamic bioethics and raise several questions that, if answered by future juridical councils, will better meet the needs of clinicians and bioethicists.     

Social Responsibility and the State's Duty to provide Healthcare: An Islamic Ethico‐Legal Perspective

The United Nations Educational, Scientific and Cultural Organization's (UNESCO) Declaration on Bioethics and Human Rights asserts that governments are morally obliged to promote health and to provide access to quality healthcare, essential medicines and adequate nutrition and water to all members of society. According to UNESCO, this obligation is grounded in a moral commitment to promoting fundamental human rights and emerges from the principle of social responsibility. Yet in an era of ethical pluralism and contentions over the universality of human rights conventions, the extent to which the UNESCO Declaration can motivate behaviors and policies rests, at least in part, upon accepting the moral arguments it makes. In this essay I reflect on a state's moral obligation to provide healthcare from the perspective of Islamic moral theology and law. I examine how Islamic ethico‐legal conceptual analogues for human rights and communal responsibility, ?uqūq al‐’ibād and far? al‐kifāyah and other related constructs might be used to advance a moral argument for healthcare provision by the state. Moving from theory to application, I next illustrate how notions of human rights and social responsibility were used by Muslim stakeholders to buttress moral arguments to support American healthcare reform. In this way, the paper advance discourses on a universal bioethics and common morality by bringing into view the concordances and discordances between Islamic ethico‐legal constructs and moral arguments advanced by transnational health policy advocates. It also provides insight into applied Islamic bioethics by demonstrating how Islamic ethico‐legal values might inform the discursive outputs of Muslim organizations.     

END‐OF‐LIFE CARE IN THE 21st CENTURY: ADVANCE DIRECTIVES IN UNIVERSAL RIGHTS DISCOURSE

This article explores universal normative bases that could help to shape a workable legal construct that would facilitate a global use of advance directives. Although I believe that advance directives are of universal character, my primary aim in approaching this issue is to remain realistic. I will make three claims. First, I will argue that the principles of autonomy, dignity and informed consent, embodied in the Oviedo Convention and the UNESCO Declaration on Bioethics and Human Rights, could arguably be regarded as universal bases for the global use of advance directives. Second, I will demonstrate that, despite the apparent consensus of ethical authorities in support of their global use, it is unlikely, for the time being, that such consensus could lead to unqualified legal recognition of advance directives, because of different understandings of the nature of the international rules, meanings of autonomy and dignity which are context‐specific and culture‐specific, and existing imperfections that make advance directives either unworkable or hardly applicable in practice. The third claim suggests that the fact that the concept of the advance directive is not universally shared does not mean that it should not become so, but never as the only option in managing incompetent patients. A way to proceed is to prioritize work on developing higher standards in managing incompetent patients and on progressing towards the realization of universal human rights in the sphere of bioethics, by advocating a universal, legally binding international convention that would outlaw human rights violations in end‐of‐life decision‐making.     

Conceptual and Practical Problems of Moral Enhancement

Recently, the debate on human enhancement has shifted from familiar topics like cognitive enhancement and mood enhancement to a new and – to no one's surprise – controversial subject, namely moral enhancement. Some proponents from the transhumanist camp allude to the ‘urgent need’ of improving the moral conduct of humankind in the face of ever growing technological progress and the substantial dangers entailed in this enterprise. Other thinkers express more sceptical views about this proposal. As the debate has revealed so far, there is no shared opinion among philosophers (or scientists) about the meaning, prospects, and ethical evaluation of moral enhancement. In this article I will address several conceptual and practical problems of this issue, in order to encourage discussion about the prospects of (thinking about) moral enhancement in the future. My assumption is that (i) for the short term, there is little chance of arriving at an agreement on the proper understanding of morality and the appropriateness of one single (meta‐)ethical theory; (ii) apart from this, there are further philosophical puzzles loosely referred to in the debate which add to theoretical confusion; and (iii) even if these conceptual problems could be solved, there are still practical problems to be smoothed out if moral enhancement is ever to gain relevance apart from merely theoretical interest. My tentative conclusion, therefore, will be that moral enhancement is not very likely to be made sense of – let alone realized – in the medium‐term future.     

Law and the architecture of social repair: gacaca days in post‐genocide Rwanda

In this article, I examine post‐genocide Rwanda's gacaca process, in which genocide suspects were tried among their neighbours before locally elected judges. I suggest two limitations in how anthropologists have typically studied post‐conflict legal institutions. Measuring the cultural relevance of law obscures contemporary imbrications of African custom and universal legal principles, and distracts from analysis of the politicized uses of culture. Analysing structural constraints and coercive dimensions, while crucial, can blind us to the very real social work that happens in these forums. Instead, I argue, what differentiated gacaca was how deeply it was contextualized – embedded in daily life, public, participatory, routinized, and based on oral testimony – and this contextualization formed the basis of its situated relevance to people's efforts to shape forms of sociality. People used gacaca sessions to negotiate the micro‐politics of reconciliation, which included debating definitions of ‘genocide citizenship’, guilt, innocence, exchange, and material loyalty. I argue for moving beyond the underlying assumption in critical transitional justice studies that law and reconciliation are mutually exclusive, to acknowledge that the instrumental and often divisive dynamics in gacaca do not merely reflect institutional failures but, rather, reflect the inherent violence of social repair.     

Jural relations of middle‐class marriage and women as legal subjects in the imaginary of ‘new India’

In India's capital New Delhi, four Family Courts were set up between 2009 and 2012, and 12 mediation institutions known as Crime Against Women Cells (CAW cells) were established during the same period. The Indian state has also endorsed gender‐equalising family legislation, mutual‐consent divorce and introduced new language of and for mediation. Together with India's projection of a rising global economy, these recent legal changes have engendered perceptions of a dramatic upturn in formal divorce and of women as liberal legal subjects. In the anthropology of Asia, marital practices have crucially informed our comprehension of modernisation, family formations and moral panics. This article explores the impact of new forms of legal availability on marriage, family and kinship among the metropolitan middle classes. It ethnographically engages with important structural shifts reflected in the intimate lives of Hindu couples, but also foregrounds a cautious narrative of newly imagined jural relations.     

German law on circumcision and its debate: How an ethical and legal issue turned political

The article aims to illuminate the recent debate in Germany about the legitimacy of circumcision for religious reasons. The aim is both to evaluate the new German law allowing religious circumcision, and to outline the resulting conflict between the surrounding ethical and legal issues. We first elucidate the diversity of legal and medical views on religious circumcision in Germany. Next we examine to what extent invasive and irreversible physical interventions on infant boys unable to given their consent should be carried out for non‐medical reasons. To this end, the potential benefits and harms of circumcision for non‐medical reasons are compared. We argue that circumcision does not provide any benefits for the ‘child as a child’ and poses only risks to boys. We then set out to clarify and analyse political (rather than ethical) justifications of the new circumcision law. We demonstrate through this analysis how the circumcision debate in Germany has been transformed from a legal and ethical problem into a political issue, due at least in part to Germany's unique historical context. Although such a particular political sensibility is entirely comprehensible, it raises particular problems when it comes to framing and responding to medical ethical issues – as in the case of religious circumcision.     

Self‐Euthanasia,the Dutch Experience: In Search for the Meaning of a Good Death or Eu Thanatos

My main purpose in this article is to establish the meaning of a ‘good death’ when death is self‐chosen. I will take as my point of departure the new notion of ‘self‐euthanasia’ and the corresponding practice that has evolved in the Netherlands in recent years. Both physician‐euthanasia and self‐euthanasia refer to an ideal process of a good death, the first being ultimately the physician's responsibility, while the second is definitely the responsibility of the individual choosing to die. However, if we also accept the existence of a fundamental moral difference between ending another person's life and ending your own life, and if we accept this moral difference to be also relevant to the normatively laden good death, then this difference represents a strong reason for preferring self‐euthanasia to physician‐euthanasia.     

Informed Consent in Direct‐to‐Consumer Personal Genome Testing: The Outline of A Model between Specific and Generic Consent

Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we argue that current practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings.     

HOW DO WE WANT TO GROW OLD? ANTI‐AGEING‐MEDICINE AND THE SCOPE OF PUBLIC HEALTHCARE IN LIBERAL DEMOCRACIES

Healthcare counts as a morally relevant good whose distribution should neither be left to the free market nor be simply imposed by governmental decisions without further justification. This problem is particularly prevalent in the current boom of anti‐ageing medicine. While the public demand for medical interventions which promise a longer, healthier and more active and attractive life has been increasing, public healthcare systems usually do not cover these products and services, thus leaving their allocation to the mechanisms of supply and demand on the free market. This situation raises the question on which basis the underlying preferences for and claims to a longer, healthier life should be evaluated. What makes anti‐ageing medicine eligible for public funding? In this article, we discuss the role of anti‐ageing medicine with regard to the scope and limits of public healthcare. We will first briefly sketch the basic problem of justifying a particular healthcare scheme within the framework of a modern liberal democracy, focusing on the challenge anti‐ageing interventions pose in this regard. In the next section, we will present and discuss three possible solutions to the problem, essentialistic, transcendental, and procedural strategies of defining the scope of public healthcare. We will suggest a procedural solution adopting essentialistic and transcendental elements and discuss its theoretical and practical implications with regard to anti‐ageing medicine.     

Transmigratory Buddhism and travelling feminisms: globalisation and cross‐cultural difference1

Recent global linkages have brought about increased cross‐cultural encounters between diverse Buddhist groups. While this often results in rich, rewarding relationships, it has also resulted in cross‐cultural tensions. This article examines disputes that arose between diverse groups of Buddhists during international Buddhist conferences about proposals to introduce full ordination for Tibetan Buddhist nuns. I argue that this debate and conflict is largely the result of globalisation and the resultant interactions between indigenous Buddhists and western converts and, in turn, western moral discourses and feminisms.     

Supporting families involved in court cases about life‐sustaining treatment: Working as academics,advocates and activists

This article explores the links between our roles as academics, advocates, and activists, focusing on our research on treatment decisions for patients in vegetative and minimally conscious states. We describe how our work evolved from personal experience through traditional social science research to public engagement activities and then to advocacy and activism. We reflect on the challenges we faced in navigating the relationship between our research, advocacy, and activism, and the implications of these challenges for our research ethics and methodology—giving practical examples of how we worked with research participants, wrote up case studies and developed interventions into legal debates. We also address the implications of the impact agenda—imposed by the British Research Excellence Framework— for our actions as scholar‐activists. Finally, we ask how practicing at the borders of academia, advocacy, and activism can inform research—helping to contextualize, sensitize, and engage theory with practice, leading to a more robust analysis of data and its implications, and helping to ensure a dialogue between research, theory, lived experience, front‐line practice, law, and public policy.     

BALANCING LIBERATION AND PROTECTION: A MODERATE APPROACH TO ADOLESCENT HEALTH CARE DECISION‐MAKING

In this paper I examine the debate between ‘protectionists’ and ‘liberationists’ concerning the appropriate role of minors in decision‐making about their health care, focusing particularly on disagreements between the two sides regarding adolescents. Protectionists advocate a more traditional, paternalistic approach in which minors have relatively little input into the healthcare decision‐making process, and decisions are made for them by parents or other adults, guided by a commitment to the patient's best interests. Liberationists, on the other hand, argue in favour of expanded participation by minors in treatment decisions, and decision‐making authority for at least some adolescents. My examination of the debate includes discussion of liberationist shifts that have taken place in the medical community as well as in legal policy and practice, and consideration of recent research on adolescent development. In the final section of the paper, I propose a moderate position that addresses both liberationist and protectionist concerns.     

Omissions, Causation, and Responsibility

In this paper I discuss a recent exchange of articles between Hugh McLachlan and John Coggon on the relationship between omissions, causation, and moral responsibility. My aim is to contribute to their debate by isolating a presupposition I believe they both share and by questioning that presupposition. The presupposition is that, at any given moment, there are countless things that I am omitting to do. This leads both McLachlan and Coggon to give a distorted account of the relationship between causation and moral or (as the case may be) legal responsibility and, in the case of Coggon, to claim that the law??s conception of causation is a fiction based on policy. Once it is seen that this presupposition is faulty, we can attain a more accurate view of the logical relationship between causation and moral responsibility in the case of omissions. This is important because it will enable us, in turn, to understand why the law continues to regard omissions as different, both logically and morally, from acts, and why the law seeks to track that logical and moral difference in the legal distinction it draws between withholding life-sustaining measures and euthanasia.