In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

This paper critically discusses an argument that is sometimes pressed into service in the ethical debate about the use of assisted reproduction. The argument runs roughly as follows: we should prevent women from using assisted reproduction techniques, because women who want to use the technology have been socially coerced into desiring children - and indeed have thereby been harmed by the patriarchal society in which they live. I call this the argument from coercion. Having clarified this argument, I conclude that (...) although it addresses important issues, it is highly problematic for the following reasons. First, if women are being coerced to desire to use AR, we should eradicate the coercive elements in pro-natalist ideology, not access to AR. Second, the argument seems to have the absurd implication that we should prevent all woman, whether fertile or not, to try to have children. Third, it seems probable that women's welfare will be greater if we let well informed and decision-competent women decide for themselves whether they want to use AR. (shrink)

What proper role should considerations of risk, particularly to research subjects, play when it comes to conducting research on human enhancement in the military context? We introduce the currently visible military enhancement techniques (1) and the standard discussion of risk for these (2), in particular what we refer to as the ‘Assumption’, which states that the demands for risk-avoidance are higher for enhancement than for therapy. We challenge the Assumption through the introduction of three categories of enhancements (3): therapeutic, preventive, (...) and pure enhancements. This demands a revision of the Assumption (4), alongside which we propose some further general principles bearing on how to balance risks and benefits in the context of military enhancement research. We identify a particular type of therapeutic enhancements as providing a more responsible path to human trials of the relevant interventions than pure enhancement applications. Finally, we discuss some possible objections to our line of thought (5). While acknowledging their potential insights, we ultimately find them to be unpersuasive, at least provided that our proposal is understood as fully non-coercive towards the candidates for such therapeutic enhancement trials. (shrink)

This book sheds light on various ethical challenges military and humanitarian health care personnel face while working in adverse conditions. Contexts of armed conflict, hybrid wars or other forms of violence short of war, as well as natural disasters, all have in common that ordinary circumstances can no longer be taken for granted. Hence, the provision of health care has to adapt, for example, to a different level of risk, to scarce resources, or uncommon approaches due to external incentives or (...) requirements. This affects the practice of health care as well as its ethics. This book offers a panoramic overview on various challenges healthcare faces in extraordinary situations and provides new insights from practitioners’ as well as from academic scholars’ perspectives. (shrink)

The view that it is better for life to be created free of disability is pervasive in both common sense and philosophy. We cast doubt on this view by focusing on an influential line of thinking that manifests it. That thinking begins with a widely-discussed principle, Procreative Beneficence, and draws conclusions about parental choice and disability. After reconstructing two versions of this argument, we critique the first by exploring the relationship between different understandings of well-being and disability, and the second (...) by more briefly focusing on the idea of a significant reason. By placing these results against the broader historical and ongoing contexts in which the lives of those with disabilities have been deemed of inferior quality, we conclude with a call for greater humility about disability and well-being in thought and practice. (shrink)

Severe brain injury is a leading cause of death and disability. Following severe brain injury diagnosis is difficult and errors frequently occur. Recent findings in clinical neuroscience may offer a solution. Neuroimaging has been used to detect preserved cognitive function and awareness in some patients clinically diagnosed as being in a vegetative state. Remarkably, neuroimaging has also been used to communicate with some vegetative patients through a series of yes/no questions. Some have speculated that, one day, this method may allow (...) severely brain-injured patients to make medical decisions. Yet, skepticism is rife, due in part to the inherent difficulty of assessing decision-making capacity through neuroimaging communication. In this thesis, I provide the first systematic analysis of this problem. I present and defend a strategy for assessing decision-making capacity in brain-injured patients who can only communicate through neuroimaging. (shrink)

A prominent objection to non-cognitive moral bio-enhancements is that they would compromise the recipient’s ‘freedom to fall’. I begin by discussing some ambiguities in this objection, before outlining an Aristotelian reading of it. I suggest that this reading may help to forestall Persson and Savulescu’s ‘God-Machine’ criticism; however, I suggest that the objection still faces the problem of explaining why the value of moral conformity is insufficient to outweigh the value of the freedom to fall itself. I also question whether (...) the objection is compatible with Neil Levy’s parity principle. Accordingly, I go on to consider an alternative relational freedom-based objection to NCMBEs that aims to explain the fundamental moral importance of the freedom that NCMBEs would violate. I argue that although this strategy might allow the critic of NCMBEs to bypass a powerful criticism of Harris’ objection, it also weakens the freedom-based objection’s compatibility with the parity principle. (shrink)

Medical practitioners are duty-bound to tell their patients the truth about their medical conditions, along with the risks and benefits of proposed treatments. Some patients, however, would rather not receive medical information. A recent response to this tension has been to argue that that the disclosure of medical information is not optional. As such, patients do not have permission to refuse medical information. In this paper I argue that, depending on the context, the disclosure of medical information can undermine the (...) patient’s ability to exercise her autonomy or have therapeutically detrimental effects. In the light of these insights I go on to develop a context-sensitive approach to medical disclosure. The advantage of this account is that it addresses concerns on both sides of the debate; whilst it acknowledges that patients do not have an exercisable ‘right not to know,’ it allows that in some cases medical information ought to be withheld. (shrink)

A governing principle in medical ethics is respect for patient autonomy. This principle is commonly drawn upon in order to argue for the permissibility of assisted dying. In this paper I explore the proper role that respect for patient autonomy should play in this context. I argue that the role of autonomy is not to identify a patient’s best interests, but instead to act as a side-constraint on action. The surprising conclusion of the paper is that whether or not it (...) is in the best interests for the patient to die is a morally objective matter. This allows for the possibility that it can be in the best interests of the patient to die even if she autonomously considers it to be in her best interest to continue living. I argue that concerns about ‘mandatory’ euthanasia can be met when patient autonomy is respected as a side-constraint on action. Ultimately, this means that assisted dying is permissible, not because the autonomous patient views her suffering to be unbearable, but because it is in her objective best interests and she permitted it via her consent. (shrink)

In this chapter, I consider the idea that physician-assisted death might come into question in the cases of psychiatric patients who are incapable of making autonomous choices about ending their lives. I maintain that the main arguments for physician-assisted death found in recent medical ethical literature support physician-assisted death in some of those cases. After assessing several possible criticisms of what I have argued, I conclude that the idea that physicianassisted death can be acceptable in some cases of psychiatric patients (...) who lack autonomy ought to be taken into account in assessing the moral and legal acceptability of physician-assisted death. (shrink)

Controversial and provocative, To Be Real is a blueprint for the creation of a new political force.

IntroductionExtended decision -making through the use of proxy decision -makers has been enshrined in a range of International Codes, Professional Guidance and Statute,For example, the UK Mental Capacity Act section 9.1; The General Medical Council ; the US National Guardianship Association ; Nuffield Council on Bioethics ; CIOMS-WHO section 6. Court cases such as Re Quinlan in the US have also contributed to establishing the groundings for the legal status of the proxy, albeit in terms of who might be suitable (...) as a proxy in cases where there was no clear appointment of them by a still competent individual. and is now widely seen as a useful means through which we can exercise control over decisions that affect our lives when we have lost capacity to make these decisions for ourselves.I will here limit myself to discussion of proxy consent for adults appointed prior to the loss of competence by the person they are acting as proxy for. The issue of p. (shrink)

Queen Mary, University of London, School of Law, Mile End Road, London E1 4NS, UK. Tel: +442078825126, Fax: +442089818733, Email: r.ashcroft{at}qmul.ac.uk ' + u + '@' + d + ' '//--> Abstract Recent doctrine in both national and international organisations concerned with public health planning and resource allocation has it that direct ethical justification of substantive decisions is so difficult as to be impossible. Instead, we should agree on criteria of procedural justice and reach decisions whose justification lies in how (...) they are arrived at, rather than any direct ethical justification on the ground of substantive moral principles. In this polemical article, I argue that this amounts to a serious dereliction of intellectual duty on the part of the bioethics community. Our role in these settings is to produce and defend the best substantive arguments we can. Failing to do this makes bioethicists at best redundant and at worst leads us to seriously defective conclusions. The argument is illustrated by analysis of the ethical frameworks for resource allocation under the UNAIDS ‘3 by 5’ programme and for pandemic influenza planning. CiteULike Connotea Del.icio.us What's this? (shrink)

Closed Loop medical devices such as Closed Loop Deep Brain Stimulation and Brain Computer Interface are some of the emerging neurotechnologies. New generations of implantable brain–computer interfaces have recently gained success in human clinical trials. These implants detect specific neuronal patterns and provide the subject with information to respond to these patterns. Further, Closed Loop brain devices give control to the subject so that he can respond and decide on a therapeutic goal. Although the implants have improved subjects’ quality of (...) life, their use has raised varied ethical concerns. The aim of this study is to provide an overview of the ethical implications specific to the therapeutic goals of closed loop brain implants. The authors analyze the related work qualitatively and quantitatively so as to help readers in understanding the various ethical implications of closed loop brain implants. (shrink)

'Brainjacking’ refers to the exercise of unauthorized control of another’s electronic brain implant. Whilst the possibility of hacking a Brain–Computer Interface (BCI) has already been proven in both experimental and real-life settings, there is reason to believe that it will soon be possible to interfere with the software settings of the Implanted Pulse Generators (IPGs) that play a central role in Deep Brain Stimulation (DBS) systems. Whilst brainjacking raises ethical concerns pertaining to privacy and physical or psychological harm, we claim (...) that the possibility of brainjacking DBS raises particularly profound concerns about individual autonomy, since the possibility of hacking such devices raises the prospect of third parties exerting influence over the neural circuits underpinning the subject’s cognitive, emotional and motivational states. However, although it seems natural to assume that brainjacking represents a profound threat to individual autonomy, we suggest that the implications of brainjacking for individual autonomy are complicated by the fact that technologies targeted by brainjacking often serve to enhance certain aspects of the user’s autonomy. The difficulty of ascertaining the implications of brainjacking DBS for individual autonomy is exacerbated by the varied understandings of autonomy in the neuroethical and philosophical literature. In this paper, we seek to bring some conceptual clarity to this area by mapping out some of the prominent views concerning the different dimension of autonomous agency, and the implications of brainjacking DBS for each dimension. Drawing on three hypothetical case studies, we show that there could plausibly be some circumstances in which brainjacking could potentially be carried out in ways that could serve to enhance certain dimensions of the target’s autonomy. Our analysis raises further questions about the power, scope, and necessity of obtaining prior consent in seeking to protect patient autonomy when directly interfering with their neural states, in particular in the context of self-regulating closed-loop stimulation devices. (shrink)

This paper defends the acts/omissions distinction which underpins the present law on euthanasia, from various criticisms, and aims to show that it is supported by fundamental principles. After rejecting arguments that deny the coherence and/or legal relevance of the distinction, the discussion proceeds to focus on the causal relationship between the doctor and the patient's death in each case. Although previous analyses, challenging the causal efficacy of omissions generally, are shown to be deficient, it is argued that in certain cases (...) of causing death by omission the causal authorship of the doctor lapses. The final part of the paper examines why this should be morally significant and proposes an answer in terms of the principle of equality. Assuming all other factors are equal, the infringement of this principle provides an additional reason against actively killing a patient, which is not present in cases of passively letting die. (shrink)

Informed consent is central to modern research ethics. Informed consent procedures have mainly been justified in terms of respect for autonomy, the core idea being that it should be every competent individual’s right to decide for herself whether or not to participate in scientific studies. A number of conditions are normally raised with regard to morally valid informed consent. These include that potential research subjects get adequate information, understand those aspects that are relevant to them, and, based on that information, (...) make a voluntary decision whether or not to participate. These conditions are meant to guarantee that participation is genuinely the individual’s own choice and is coherent with his or her authentic interests. (shrink)

Die spezifischen Anforderungen riskanter Entscheidungslagen stellen die Medizinethik zunehmend vor die Herausforderung, normative Modelle der Risikokommunikation zu etablieren. Dabei geht es freilich nicht nur darum, Informationen über die Wahrscheinlichkeiten, mit denen bestimmte Ereignisse eintreten, bereitzustellen. Zur medizinischen Aufklärung gehört auch, dass Risiken verständlich kommuniziert werden. Andernfalls würde ein Patient zwar über Informationen verfügen, wäre aber nicht in der Lage, sie richtig zu interpretieren und zu bewerten. Der Beitrag stellt am Beispiel von Mammographie-Screenings Probleme der transparenten Kommunikation medizinischer Risiken dar. Diese (...) betreffen zum einen Informationen, die Ärztinnen und Ärzten in medizinischen Fachzeitschriften, zum anderen Informationen, die interessierten oder betroffenen Frauen in Broschüren vermittelt werden. Diese Schwierigkeiten der Risikokommunikation können teils durch institutionelle Lösungen, teils durch Aufklärung überwunden werden. (shrink)

The ethical debate on embryo research, particularly on whether to destroy human embryos for stem cell research, is sometimes said to involve a confrontation between religion and science. The claim is misleading at best. Ironically, religious claims have not infrequently been invoked by those who support human embryonic stem cell research, who have said that such research will enable us to “answer the prayers of America’s families” or present us with “the biblical power to cure.” And even religious organizations have (...) often made the case against the ethical acceptability of this research relying on science, and on general ethical considerations that transcend religious divisions. The Catholic Church, in particular, maintains that the ethical norm against directly taking the life of any innocent human being can be understood and embraced by people of good will, with or without religious faith, and that the application of this norm to the present controversy depends on an understanding of some basic facts about early human development. (shrink)

Two approaches to bioethical and broader applied philosophical debate are discussed and their implications in the context of the current Covid discourse are examined. It is argued that an approach designed to be more 'practical' can be counter-productive, and a more traditional approach to critical thinking has a new and vital role in the context of our current moral and epistemic controversies.

I sometimes wonder whether some proponents of physician-assisted suicide or physician-assisted death think they own the copyright to such catchy phrases as “death with dignity” and “a good death” so that if you are against PAS or PAD, thenyou must be againsta dignified death or a good death. If one removes the quotation marks around phrases like “aid-in-dying” or “compassionate care for the dying,” I am not opposed to such end-of-life care either. Indeed, how couldanybodybe against this type of care?I (...) do not want to abandon dying patients anymore than Dr. Timothy Quill does. Although, unfortunately, it will not always be easy to achieve the desired result, I agree with him that it ought to be a goal of medicine “to help people die well, to help them receive a good death” — or at least “the best possible” death under the circumstances. I part company with Professor Quill, however, when he urges us to change the law in the majority of our states so that in some circumstances patients may achieve a “good death” or a “dignified” one by means of lethal drugs. (shrink)

Transplantation of vital organs has been premised ethically and legally on "the dead donor rule" (DDR)—the requirement that donors are determined to be dead before these organs are procured. Nevertheless, scholars have argued cogently that donors of vital organs, including those diagnosed as "brain dead" and those declared dead according to cardiopulmonary criteria, are not in fact dead at the time that vital organs are being procured. In this article, we challenge the normative rationale for the DDR by rejecting the (...) underlying premise that it is necessarily wrong for physicians to cause the death of patients and the claim that abandoning this rule would exploit vulnerable patients. We contend that it is ethical to procure vital organs from living patients sustained on life support prior to treatment withdrawal, provided that there is valid consent for both withdrawing treatment and organ donation. However, the conservatism of medical ethics and practical concerns make it doubtful that the DDR will be abandoned in the near future. This leaves the current practice of organ transplantation based on the "moral fiction" that donors are dead when vital organs are procured. (shrink)

This article argues for the elimination of the concept of life worth living from philosophical vocabulary on three complementary grounds. First, the basic components of this concept suffer from multiple ambiguities, which hamper attempts to ground informative evaluative and classificatory judgments about the worth of life. Second, the criteria proposed to track the extension of the concept of life worth living rest on unsupported axiological assumptions and fail to identify precise and plausible referents for this concept. And third, the concept (...) of life worth living is not shown to serve any major evaluative or classificatory purpose besides those served by already available axiological concepts. By eliminating the concept of life worth living, philosophers will free themselves of the task of addressing ill-posed axiological questions and ground reflection about the worth of life on more rigorous conceptual foundations. (shrink)

The author introduces and critically analyzes two recent, curious findings and their accompanying explanations regarding how the folk intuits the capabilities of the dead and those in a persistent vegetative state. The dead are intuited to survive death, whereas PVS patients are intuited as more dead than the dead. Current explanations of these curious findings rely on how the folk is said to conceive of death and the dead: either as the annihilation of the person, or that person’s continuation as (...) a disembodied being. The author argues that these two conceptions are incompatible and inconsistent with each other and the evidence. Contrariwise, the author argues that the folk intuition about dead-survivors and the living dead are more easily explained by appealing to cross-culturally established concepts: the folk biological concept of death the existential concept of death, and the concept of social death. (shrink)

This paper deals with ethical issues of particular relevance to longitudinal research involving children. First some general problems concerning information and lack of understanding are discussed. Thereafter focus is shifted to issues concerning information and consent procedures in studies that include young children growing up to become autonomous persons while the project still runs. Some of the questions raised are: When is it right to include children in longitudinal studies? Is an approval from the child needed? How should information to (...) children be handled? A general point stressed is that autonomy considerations underline the importance of adjusting the information given to meet demands. A “presumption of competence” may be needed in research involving children, in order to pay their views sufficient attention. (shrink)

Ramsey sees life as a gift and a trust given to people by God. This theological understanding of human life frames his judgment of the immorality of euthanasia in its many forms. Assuming Ramsey’s theological insights and framing of this issue, I highlight a particular way of thinking about euthanasia that both seems to capture the essence of the debate and does not necessarily build the moral evaluation into its description. I aim to identify and unpack the description most consistent (...) with the claims made by Ramsey of how other end-of-life (EOL) care options are seen as life choices in order to die well enough. If this project is right-headed, it can be used as a backdrop for assessing how many of the currently accepted and perhaps developing options in EOL and palliative care may or may not be morally distinct from euthanasia. Therefore, those who oppose euthanasia while wanting also to maintain the appropriateness of many of other EOL care options in certain situations are not acting inconsistently. This primarily conceptual work is done in service to those who take Ramsey’s theological framework seriously. (shrink)

Manuscript based on address delivered February, 1998 at the Annual Meeting of the Association of Practical and Professional Ethics, Dallas, Texas.

Depression is often diagnosed in patients nearing the end of their lives and medication or psychotherapy is prescribed. In many cases this is appropriate. However, it is widely agreed that a health care professional should treat sick persons so as to improve their condition as they define improvement. This raises questions about the contexts in which treatment of depression in late life is appropriate. This article reviews a problematic case concerning the appropriateness of treatment in light of the literature in (...) bioethics. Specific attention is paid to the concept of authenticity and the role of suffering. Suffering is often the result of a situation in which one's self is damaged. In some circumstances, this suffering should not be seen as a symptom of illness but as a reflection, in a difficult life context, of the individual's authentic nature. Assessment of depression in the elderly must go beyond a symptom list and must consider both the context of the individual's situation and his or her authentic self. When the symptoms reflect the individual's assessment of the situation in the context of the authentic self, they may be "appropriate." However, even when the symptoms are appropriate, if they interfere with life assessment and adjustment, treatment should be considered. (shrink)

Bioethics is a hybrid discipline. As a theoretical enterprise it stands for untrammeled inquiry and argument. Yet it aims to influence medical practice and policy. In this article we explore tensions between these two dimensions of bioethics and examine the merits and perils of a “Socratic” approach to bioethics that challenges “the conventional wisdom.”.