It is our job now - the job of this book - to influence and develop the unsettled discourse of human rights so as to complete the incomplete idea.

The Convention on the Rights of Persons with Disabilities is increasingly seen as driving a paradigm shift in mental health law, particularly in relation to the understanding that it requires a shift from substituted to supported decisions. This article identifies two competing moral commitments implied by this shift, both of which appeal to the notion of autonomy. It is argued that because of these commitments the Convention is in tension with more general calls in the medical ethics literature for preserving (...) patient autonomy through support. The competing commitments within the Convention also present a particular challenge in putting the support it requires into practice. A discursive control account of freedom is used to develop some practical guidelines for navigating this new moral territory. (shrink)

The concept of dignity is pervasive in bioethics. However, some bioethicists have argued that it is useless on three grounds: that it is indeterminate; that it is reactionary; and that it is redundant. In response, a number of defences of dignity have recently emerged. All of these defences claim that when dignity is suitably clarified, it can be of great use in helping us tackle bioethical controversies. This paper rejects such defences of dignity. It outlines the four most plausible conceptions (...) of dignity: dignity as virtuous behaviour; dignity as inherent moral worth; Kantian dignity; and dignity as species integrity. It argues that while each conception is coherent, each is also fundamentally flawed. As such, the paper argues for a bioethics without dignity: an 'undignified bioethics.'. (shrink)

The practice of obtaining informed consent has its history in, and gains its meaning from, medicine and biomedical research. Discussions of disclosure and justified nondisclosure have played a significant role throughout the history of medical ethics, but the term “informed consent” emerged only in the 1950s. Serious discussion of the meaning and ethics of informed consent began in medicine, research, law, and philosophy only around 1972.

The principle of respect for human dignity plays a crucial role in the emerging global norms relating to bioethics, in particular in the UNESCO Universal Declaration on Bioethics and Human Rights. This instrument, which is a legal, not merely an ethical document, can be regarded as an extension of international human rights law into the field of biomedicine. Although the Declaration does not explicitly define human dignity, it would be a mistake to see the emphasis put on this notion as (...) a mere rhetorical strategy. Rather, the appeal to dignity reflects a real concern about the need to promote respect both for the intrinsic worth of human beings and for the integrity of the human species. But dignity alone cannot solve most of the dilemmas posed by biomedical practice. This is why international biolaw combines, on the one hand, the appeal to human dignity as an overarching principle with, on the other hand, the recourse to human rights, which provide an effective and practical way forward for dealing with bioethical issues at a global level. (shrink)

The UK Government published various circulars to indicate the importance of respecting the privacy and dignity of NHS patients following the implementation of the Human Rights Act, 1998. This research used an ethnographic method to determine the extent to which health professionals had in fact upheld the philosophy of these documents. Fieldwork using nonparticipant observation, and unstructured and semistructured interviews with patients and staff, took place over six months in three acute care wards in a large district NHS trust hospital. (...) Applying the principles of phenomenology and grounded theory, the data were analysed and the contents organized into 11 key categories, leading to the formulation of a privacy model. The level of intrusion into patients’ privacy by health professionals was measured against the benchmarking of the ‘dignity and privacy’ factors contained in the Department of Health’s The essence of care document and Article 8 of the Human Rights Act. The findings established that patients had little privacy in the wards, and that the terms ‘privacy of the person’ and ‘dignity’ are interrelated. (shrink)

The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide. The tension between the (...) analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement. (shrink)

The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide. -/- The tension between (...) the analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement. (shrink)

Do fetuses have a right to life in virtue of the fact that they are potential adult human beings? I take the claim that the fetus is a potential adult human being to come to this: if the fetus grows normally there will be an adult human animal that was once the fetus. Does this fact ground a claim to our care and protection? A great deal hangs on the answer to this question. The actual mental and physical capacities of (...) a human fetus are inferior to those of adult creatures generally thought to lack a serious right to life, and the mere fact that a fetus belongs to our species in particular seems morally irrelevant. Consequently, a strong fetal claim to protection rises or falls with the appeal to the fetus's potentiality, for nothing else can justify it. (shrink)

It is hypothesised and argued that “the four principles of medical ethics” can explain and justify, alone or in combination, all the substantive and universalisable claims of medical ethics and probably of ethics more generally. A request is renewed for falsification of this hypothesis showing reason to reject any one of the principles or to require any additional principle(s) that can’t be explained by one or some combination of the four principles. This approach is argued to be compatible with a (...) wide variety of moral theories that are often themselves mutually incompatible. It affords a way forward in the context of intercultural ethics, that treads the delicate path between moral relativism and moral imperialism. Reasons are given for regarding the principle of respect for autonomy as “first among equals”, not least because it is a necessary component of aspects of the other three. A plea is made for bioethicists to celebrate the approach as a basis for global moral ecumenism rather than mistakenly perceiving and denigrating it as an attempt at global moral imperialism. (shrink)

Many of the contemporary disagreements regarding privacy are conceptual in nature. They concern the meaning or definition of privacy and the analytic basis of distinguishing privacy rights from other kinds of rights recognized within moral, political, or legal theories. The two main alternatives within this debate include reductionist views, which seek a narrow account of the kinds of invasions or intrusions distinctly involving privacy losses, and anti-reductionist theories, which treat a much broader array of interferences with a person as separate (...) and irreducible kinds of privacy invasions. Other theorists have expressed doubts about the prospects for achieving greater analytical precision even within a fairly expansive anti-reductionist approach. However, a reductionist privacy definition is defended in this article, and its primary theoretical virtues are its ability to unify and explain the insights of several competing definitions and its role in developing an account of privacy rights that is both internally coherent and consistent with a plausible understanding of the theoretical basis for a number of related rights. (shrink)

This collection of original essays explores the social and relational dimensions of individual autonomy. Rejecting the feminist charge that autonomy is inherently masculinist, the contributors draw on feminist critiques of autonomy to challenge and enrich contemporary philosophical debates about agency, identity, and moral responsibility. The essays analyze the complex ways in which oppression can impair an agent's capacity for autonomy, and investigate connections, neglected by standard accounts, between autonomy and other aspects of the agent, including self-conception, self-worth, memory, and the (...) imagination. (shrink)

What makes individuals, groups, or even entire countries vulnerable? And why is vulnerability a concern in bioethics? A simple answer to both questions is that vulnerable individuals and groups are subject to exploitation, and exploitation is morally wrong. This analysis is limited to two areas. First is the context of multinational research, in which vulnerable people can be exploited even if they are not harmed, and harmed even if they are not exploited. Second is the situation of women, who are (...) made vulnerable in cultural settings or in entire countries in which they are oppressed and powerless. (edited). (shrink)

What are human rights? According to one longstanding account, the Naturalistic Conception of human rights, human rights are those that we have simply in virtue of being human. In recent years, however, a new and purportedly alternative conception of human rights has become increasingly popular. This is the so-called Political Conception of human rights, the proponents of which include John Rawls, Charles Beitz, and Joseph Raz. In this paper we argue for three claims. First, we demonstrate that Naturalistic Conceptions of (...) human rights can accommodate two of the most salient concerns that proponents of the Political Conception have raised about them. Second, we argue that the theoretical distance between Naturalistic and Political Conceptions is not as great as it has been made out to be. Finally, we argue that a Political Conception of human rights, on its own, lacks the resources necessary to determine the substantive content of human rights. If we are right, not only should the Naturalistic Conception not be rejected, the Political Conception is in fact incomplete without the theoretical resources that a Naturalistic Conception characteristically provides. These three claims, in tandem, provide a fresh and largely conciliatory perspective on the ongoing debate between proponents of Political and Naturalistic Conceptions of human rights. (shrink)

Many international declarations state that human beings have a human right to health care. However, is there a human right to health care? What grounds this right, and who has the corresponding duties to promote this right? Elsewhere, I have argued that human beings have human rights to the fundamental conditions for pursuing a good life. Drawing on this fundamental conditions approach of human rights, I offer a novel way of grounding a human right to health care.

The aim of the present study was to describe how registered nurses in nursing homes ensure legal security, good and safe nursing care and uphold the dignity of nursing home residents with severe dementia without violating residents’ integrity. Semi-structured interviews were conducted with 10 charge nurses in a county in central Sweden. The transcribed interviews were examined using manifest and latent content analyses. The manifest analysis identified actual local routines involving coercive treatment and registered nurses’ descriptions of complications and alternative (...) measures. The latent analysis resulted in three themes describing nursing strategies: one with coercive treatment, one with coercive treatment under specific circumstances and one to prevent coercive treatment. Interpretations of legal terms regarding coercive treatment and inadequate gerontological nursing training and understaffing seem to preserve the use of coercive treatment. (shrink)

Several foundational documents of bioethics mention the special obligation researchers have to vulnerable research participants. However, the treatment of vulnerability offered by these documents often relies on enumeration of vulnerable groups rather than an analysis of the features that make such groups vulnerable. Recent attempts in the scholarly literature to lend philosophical weight to the concept of vulnerability are offered by Luna and Hurst. Luna suggests that vulnerability is irreducibly contextual and that Institutional Review Boards (Research Ethics Committees) can only (...) identify vulnerable participants by carefully examining the details of the proposed research. Hurst, in contrast, defines the vulnerable as those especially at risk of incurring the wrongs to which all research ethics participants are exposed. We offer a more substantive conception of vulnerability than Luna but one that gives rise to a different rubric of responsibilities from Hurst's. While we understand vulnerability to be an ontological condition of human existence, in the context of research ethics, we take the vulnerable to be research subjects who are especially prone to harm or exploitation. Our analysis rests on developing a typology of sources of vulnerability and showing how distinct sources generate distinct obligations on the part of the researcher. Our account emphasizes that the researcher's first obligation is not to make the research participant even more vulnerable than they already are. To illustrate our framework, we consider two cases: that of a vulnerable population involved in international research and that of a domestic population of people with diminished capacity. (shrink)

In this article I examine the proposition that severe cognitive disability is an impediment to moral personhood. Moral personhood, as I understand it here, is articulated in the work of Jeff McMahan as that which confers a special moral status on a person. I rehearse the metaphysical arguments about the nature of personhood that ground McMahan’s claims regarding the moral status of the “congenitally severely mentally retarded” (CSMR for short). These claims, I argue, rest on the view that only intrinsic (...) psychological capacities are relevant to moral personhood: that is, that relational properties are generally not relevant. In addition, McMahan depends on an argument that species membership is irrelevant for moral consideration and a contention that privileging species membership is equivalent to a virulent nationalism (these will be discussed below). In consequence, the CSMR are excluded from moral personhood and their deaths are less significant as their killing is less wrong than that of persons. To throw doubt on McMahan’s conclusions about the moral status and wrongness of killing the CSMR I question the exclusive use of intrinsic properties in the metaphysics of personhood, the dismissal of the moral importance of species membership, and the example of virulent nationalism as an apt analogy. I also have a lot to say about McMahan’s empirical assumptions about the CSMR. (shrink)

In a lively, interesting, and provocative paper Tuija Takala charges Julian Savulescu and me with bringing utilitarianism into disrepute and indeed with attempting to shoot it down, presumably in flames.1 Takala does not mince words. When she suggests that in our writings “utilitarianism is turning into the monster its critics always thought it was”, she is associating herself with those who charge us with propounding, again her words, the “inhumane theory that allows the sacrifice of minorities, the killing of the (...) innocent, and simplistic calculations on the value of life”. Perhaps surprisingly for someone who identifies herself strongly with utilitarianism, Takala seems to take the worst and most ignorant critics of consequentialism generally, and of utilitarianism in particular, at face value and suggests that because their lazy, tendentious, and misdirected attacks on those they take to be utilitarians are often made against Savulescu and me that we somehow bear responsibility for this and for any charges they make, however ill judged or poorly supported by evidence. (shrink)

This article summarizes some of the results of the BIOMED II project “Basic Ethical Principles in European Bioethics and Biolaw” connected to a research project of the Danish Research Councils “Bioethics and Law”. The BIOMED project was based on cooperation between 22 partners in most EU countries. The aim of the project was to identify the ethical principles of respect for autonomy, dignity, integrity and vulnerability as four important ideas or values for a European bioethics and biolaw. The research concluded (...) that the basic ethical principles cannot be understood as universal everlasting ideas or transcendental truths but they rather function reflective guidelines and important values in European culture. The method of the research was conceptual, philosophical analysis of the cultural background of the four values or normative ideas that people use and find important in their existence. Moreover, this was combined with analysis of empirical legal material and policy documents. Also, a number of qualitative interviews with relevant experts were carried out. Another important result of the BIOMED project was the partner's Policy Proposals to the European Commission, the Barcelona Declaration, unique as a philosophical and political agreement between experts in bioethics and biolaw from many different countries. The Policy Proposals are reprinted here at the end of the article. (shrink)

Human rights are universally acknowledged to be important, although they are, of course, by no means universally respected. This universality has helped to combat racism and sexism and other arbitrary and vicious forms of discrimination. Unfortunately, as we shall see, the universality of human rights is both too universal and not universal enough. It is time to take the “human” out of human rights. Indeed, it is very probable that in the future there will be no more humans as we (...) know them now, because the further evolution of our species, either Darwinian or more likely determined by human choices, will, we must hope, result in the emergence of new sorts of beings better able to cope with the intellectual and physical challenges of the future. One example of the ways in which this is already happening is the sorts of cognitive enhancement that are already coming on stream. Another is signaled by stem cell research and the birth of regenerative medicine. (shrink)

Alan Gewirth extends his fundamental principle of equal and universal human rights, the Principle of Generic Consistency, into the arena of social and political philosophy, exploring its implications for both social and economic rights. He argues that the ethical requirements logically imposed on individual action hold equally for the supportive state as a community of rights, whose chief function is to maintain and promote the universal human rights to freedom and well-being. Such social afflictions as unemployment, homelessness, and poverty are (...) basic violations of these rights, which the supportive state is required to overcome. A critical alternative to both "liberal" and "communitarian" views, this book will command the attention of anyone engaged in the debate over social and economic justice. (shrink)

Even though respect for integrity is hailed in several authoritative legal and ethical documents, and is typically presented as a complement to respect for autonomy, it is largely neglected in many leading works in ethics. Is such neglect warranted, or does it express a prejudice? This article argues that the latter is the case, and that this is due to misplaced conceptual concerns. It offers some proposals as regards the conceptualization of integrity in social ethics in general and in biomedical (...) ethics in particular. Five main directions of interpretation of “integrity” are discerned and shown to be relevant for different areas of biomedical ethics. The defense of respect for integrity is served by a softening of principlism and by greater attention to context among the initial critics of this principle. (shrink)

The professional regulatory system known as medical ethics has been one of the most visionary and socially valuable creations of the medical profession. Its beneficial influence has extended beyond physician/patient relations, to the shaping of many key humanistic and egalitarian features of the world’s legal and political institutions. The continued existence of medical ethics as a professionally influential normative system, however, is being challenged by international human rights. The UNESCO Universal Declaration on Bioethics and Human Rights, is likely to be (...) an important point of intersection in this process. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing in mind the (...) Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

This volume collects two lectures by Jeremy Waldron that were originally given as Berkeley Tanner Lectures along with responses to the lectures from Wai Chee Dimock, Don Herzog, and Michael Rosen; a reply to the responses by Waldron; and an introduction by Meir Dan-Cohen.

This book is the result of over 30 years of collaboration among its authors. It uses the systematic account of our common morality developed by one of its authors to provide a useful foundation for dealing with the moral problems and disputes that occur in the practice of medicine. The analyses of impartiality, rationality, and of morality as a public system not only explain why some bioethical questions, such as the moral acceptability of abortion, cannot be resolved, but also provide (...) a method for determining the correct answer for those occasions when a bioethical question has a unique correct answer. This new edition includes an entire chapter that has been added to address the controversial issue of abortion within the authors' distinct framework. This book presents the latest revisions of the authors' orignial analyses of the concepts of death and disease, analyses that have had a significant impact on the field of bioethics. It also includes an added chapter on mental disorders, where the authors' definition influenced what psychiatry classifies as a mental disorder, and so has had an impact that reveals beyond the field of bioethics. In this edition, the authors also offer a new, more developed perspective on the concept of valid or informed consent by considering what information physicians should be required to know before proposing screening, diagnostic testing, prescribing medications, or performing surgery. The book also integrates some of the important insights of the field of clinical epidemiology into its discussion of valid consent. Its account of paternalism and its justification, perhaps the most ubiquitous moral problem in medical ethics, has had considerable influence. Its discussion of euthanasia and physician assisted suicide challenges the standard views that have been put forward by both proponents and opponents of physician assisted suicide and voluntary active euthanasia. (shrink)

Why has autonomy been a leading idea in philosophical writing on bioethics, and why has trust been marginal? In this important book, Onora O'Neill suggests that the conceptions of individual autonomy so widely relied on in bioethics are philosophically and ethically inadequate, and that they undermine rather than support relations of trust. She shows how Kant's non-individualistic view of autonomy provides a stronger basis for an approach to medicine, science and biotechnology, and does not marginalize untrustworthiness, while also explaining why (...) trustworthy individuals and institutions are often undeservingly mistrusted. Her arguments are illustrated with issues raised by practices such as the use of genetic information by the police or insurers, research using human tissues, uses of new reproductive technologies, and media practices for reporting on medicine, science and technology. Autonomy and Trust in Bioethics will appeal to a wide range of readers in ethics, bioethics and related disciplines. (shrink)

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st of these lectures, I present a conception of dignity that preserves its ancient association with rank and station, and a conception of human dignity that amounts to a generalization of high status across all human beings. The lectures argue that this provides a better understanding of human dignity and of the work it does in theories of rights than the better-known Kantian conception. The second lecture focuses particularly on the importance of dignity - understood in this way - as (...) a status defining a person's relation to law: their presentation as persons capable of self-applying the law, capable of presenting and arguing a point of view, and capable of responding to law's demands without brute coercion. Together the two lectures also illuminate the relation between dignity conceived as the ground of rights and dignity conceived as the content of rights; they also illuminate important ideas about dignity as noble bearing and dignity as the subject of a right against degrading treatment; and they help us understand the sense in which dignity is better conceived as a status than as a kind of value. (shrink)