This paper explores some of the values that underpin health care and how these relate more specifically to the values and ethics of palliative care. The paper focuses on the concept of autonomy because autonomy has emerged as a foundational concept in contemporary health care ethics and because this is an opportunity to scratch the surface of this concept in order to reveal something of its complexity, a necessary precaution when applying the concept to the context of palliative care. The (...) paper begins with a theoretical discussion of autonomy exploring an aspect of its contemporary meaning and relevance to health care. The second part of the paper focuses more closely on how the principle of respect for autonomy can be applied in the context of palliative care. In this section an ethical framework is employed to explore a practical application of this principle within a broader context of respect for persons. (shrink)

Techniques for resolving some types of inherited mitochondrial diseases have recently been the subject of scientific research, ethical scrutiny, media coverage and regulatory initiatives in the UK. Building on research using eggs from a variety of providers, scientists hope to eradicate maternally transmitted mutations in mitochondrial DNA by transferring the nuclear DNA of a fertilised egg, created by an intending mother at risk of transmitting mitochondrial disease, and her male partner, into an enucleated egg provided by another woman. In this (...) article we examine how egg providers for mitochondrial research and therapy have been represented in stakeholder debates. A systematic review of key documents and parliamentary debates shows that the balance of consideration tilts heavily towards therapeutic egg providers; research egg providers have been ignored and rendered invisible. However, mapping the various designations of therapeutic egg providers shows that their role is so heavily camouflaged that they have only an absent presence in discussions. We explore this puzzling ambivalence towards egg providers whose contributions are necessary to the success of current mitochondrial research and proposed therapies. We suggest that labels that diminish the contributions of egg providers serve certain governance objectives in managing possible future claims about, and by, therapeutic egg providers. We demonstrate that the social positioning of research egg providers is entangled within that of therapeutic egg providers which means that the former can also never receive their due recognition. This article contributes to the wider literature on the governance of new technological interventions. (shrink)

This article provides a concise overview of the history of scholarship on solidarity in Europe and North America. While recent decades have seen an increase in conceptual and scholarly interest in solidarity in North America and other parts of the Anglo-Saxon world, the concept is much more strongly anchored in Europe. Continental European politics in particular have given rise to two of the most influential traditions of solidarity, namely, socialism and Christian ethics. Solidarity has also guided important public instruments and (...) institutions in Europe. Despite the much stronger affinity of continental European societies to solidaristic thinking, we argue that solidarity has much to offer for addressing societal challenges on both sides of the Atlantic and beyond. After proposing a working definition of solidarity that highlights its utility for guiding policy and practice, we give an example of how a solidarity-based perspective can shape instruments for the governance of data use. (shrink)

Although appeals to human dignity became quite popular after the end of War World II in various moral and legal settings, the term retained an air of semantic indeterminacy, and scholars are of opposing minds concerning its usefulness and significance. In this essay I intend to offer a sketch of a “deflationary” account of human dignity – viewed as one moral value among many others – according to which it is conceived as the minimal respect we prima facie owe to (...) our own personality, as well as to the personality of everyone else without any restriction or exception. This account is accompanied by a justification, which does not presuppose the endorsement of a particular moral theory, and envisages dignity as a bulwark to counter the morally abhorrent consequences of many categorical and normatively tainted dichotomies western societies have created. (shrink)

The discussion of the nature and value of dignity in and for bioethics concerns not only the importance of the concept but also the aims of bioethics itself. Here, I challenge the claim that the concept of dignity is useless by challenging the implicit conception of usefulness involved. I argue that the conception of usefulness that both opponents and proponents of dignity in bioethics adopt is rooted in a narrow understanding of the role of normative theory in practical ethical thinking. (...) I then offer an alternate understanding of the nature and value of dignity. I begin by recognizing that claims that one’s dignity has been violated point to an important difference between “respect for autonomy” and “respect for persons.” I then suggest three different conceptions of how dignity can be normatively guiding for bioethics, and conclude that, ultimately, understanding dignity as the cornerstone of a reflective perspective that frames moral reflection and deliberation is valuable for doing bioethics well. (shrink)

Are there distinctly European values in bioethics, and if there are, what are they? Some Continental philosophers have argued that the principles of dignity, precaution, and solidarity reflect the European ethos better than the liberal concepts of autonomy, harm, and justice. These principles, so the argument goes, elevate prudence over hedonism, communality over individualism, and moral sense over pragmatism. Contrary to what their proponents often believe, however, dignity, precaution, and solidarity can be interpreted in many ways, and it is not (...) clear which reading would, or should, be favored by popular opinion. It is therefore dangerous to think that any one understanding of ``European'', or any other, values could be legitimately imposed on those who have different ideas about morality in health care and related fields. Bioethical principles should be employed to promote discussion, not to suppress it. (shrink)

:Something strange has happened to the concept of dignity in bioethics. After a long period in which U.S. pragmatist and U.K. consequentialist philosophers have argued that the concept is useless and vacuous, and in which they have been reasonably successful in expunging it from mainstream English-language academic bioethics, dignity has suddenly become popular again in debates about the legalization of physician-assisted dying. And, even stranger, it is deployed not by conservatives but by liberals. In the debates about PAD, liberal proponents (...) of legalization seem to accept without question that there is such a state or process as “death with dignity,” which is juxtaposed to “undignified dying.” It also seems to be accepted that both of these states can be fairly easily identified and that they carry great moral weight. This article provides an analysis of the current resurgence of “undignified” arguments and argues on the basis of that analysis that a proper understanding of the concept of dignity shows that the previous reductive arguments against dignity are partially incomplete and therefore partially misguided and that, despite dignity having meaning, the idea of an undignified death cannot carry the moral weight it is given by proponents of the legalization of PAD. (shrink)

Drawing on Lennart Nordenfelt’s distinction between the four distinct senses of dignity, I elucidate the meaning of dignity in the context of research involving human subjects. I acknowledge that different interpretations of the personal senses of dignity may be acceptable in human subject research, but that inherent dignity (Menschenwürde) is not open to interpretation in the same way. In order to map out the grounds for interpreting dignity, I examine the unique application of the principle of respect for dignity in (...) Canada’s research ethics guidelines. These guidelines are unique because they consider dignity to be a foundational concept and the protection of the dignity of research subjects is regarded as a measure that prevents “the impoverishment of humanity as a whole”. While the conception of humanity invoked here is incomplete, Canada’s research ethics guidelines nevertheless represent a more European approach to biomedical policy. Finally, in order to correct a pervasive blind spot in contemporary policy on research involving human subjects, I sketch a functional model for attributing inherent dignity that avoids the untenable connotations of speciesism. (shrink)

This paper discusses the need to focus on the dignity of human participants as a legal and ethical basis for providing post-trial access to healthcare. Debate about post-trial benefits has mostly focused on access to products or interventions proven to be effective in clinical trials. However, such access may be modelled on a broad fair benefits framework that emphasises both collateral benefits and interventional products of research, instead of prescribed post-trial access alone. The wording of the current version of the (...) Declaration of Helsinki could in fact be interpreted to broaden the scope to include other collateral benefits by applying such a broad fair benefits framework. We argue that this possibility should be utilised by low and middle income countries’ health research ethics committees in order to ensure that research participants who enrol in clinical trials so as to receive medical care continue to access care after the trial is concluded, as befits their dignity. Although each LMIC has unique concerns, nonetheless there are common challenges based especially on emerging issues, such as post-trial access to healthcare. Accordingly, the South African perspective is used to draw lessons that can benefit other LMICs. (shrink)

The definition of the beginning of life and the protection of the right to life when conflicting entitlements and interests emerge are highly disputed issues worldwide, and the Inter-American Court of Human Rights and the European Court of Human Rights have been called to tackle these questions in their jurisprudence, especially when reproductive rights were at stake. In this respect, this paper focuses on the status of human embryo and on prenatal life and provides an assessment of the approaches that (...) the two Courts have developed when dealing with such delicate issues as in vitro fertilization and abortion, respectively through the pervasive scrutiny of the San José Court and its purposeful impact on the domestic sphere and usually through the recognition of a wide margin of appreciation by the Strasbourg Court. In this regard, this paper provides an analysis of the Courts' most significant case law, as Artavia Murillo v. Costa Rica and 'Beatriz' cases, with reference to the IACtHR, and the ECtHR's decisions Vo v. France, Evans v. the United Kingdom, S.H. and Others v. Austria, Costa and Pavan v. Italy, Parrillo v. Italy and A, B, C v. Ireland, while considering the peculiarities of the systems of the American Convention on Human Rights and the European Convention on Human Rights and the role of the Convention on Human Rights and Biomedicine and its Protocols in Strasbourg jurisprudence. Moving from this assessment, this paper aims to suggest possible solutions to improve the results achieved by the two Courts, also through judicial cross-fertilization and through reference to the relevant international instruments according to Article 31 of the Vienna Convention on the Law of the Treaties, for example the right to enjoy the benefits of scientific progress enshrined in the International Covenant on Economic, Social and Cultural Rights. (shrink)