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)

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 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)

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)

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

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)

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)

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)

Rationing healthcare is a difficult task, which includes preventing patients from accessing potentially beneficial treatments. Proponents of implicit rationing argue that politicians cannot resist pressure from strong patient groups for treatments and conclude that physicians should ration without informing patients or the public. The authors subdivide this specific programme of implicit rationing, or “hidden rationing”, into local hidden rationing, unsophisticated global hidden rationing and sophisticated global hidden rationing. They evaluate the appropriateness of these methods of rationing from the perspectives of (...) individual and political autonomy and conclude that local hidden rationing and unsophisticated global hidden rationing clearly violate patients’ individual autonomy, that is, their right to participate in medical decision-making. While sophisticated global hidden rationing avoids this charge, the authors point out that it nonetheless violates the political autonomy of patients, that is, their right to engage in public affairs as citizens. A defence of any of the forms of hidden rationing is therefore considered to be incompatible with a defence of autonomy. (shrink)

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)

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)

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)

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)