Mark Schweda

“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding of ethics,” addressing three different issues: (a) the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, (b) the normative relevance of such lay moralities for the justification of ethical decisions, and (c) the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ

Technological approaches are increasingly discussed as a solution for the provision of support in activities of daily living as well as in medical and nursing care for older people. The development and implementation of such assistive technologies for eldercare raise manifold ethical, legal, and social questions. The discussion of these questions is influenced by theoretical perspectives and approaches from medical and nursing ethics, especially the principlist framework of autonomy, non-maleficence, beneficence, and justice. Tying in with previous criticism, the present contribution is taking these principles as a starting point and as a frame of reference to be critically re-examined. It thus aims to outline how existing ethical frameworks need to be extended or reconsidered to capture the ethical issues posed by technological developments regarding care for older people. In a first step, we provide a brief overview of assistive technologies in eldercare according to their purposes and functions. In the next step, we discuss how the questions and problems raised by new technologies in eldercare call for an expansion, re-interpretation, and revision of the principlist framework. We underline that the inclusion of ethical perspectives from engineering and computer science as well as a closer consideration of socio-political dimensions and fundamental anthropological and praxeological questions are needed.

Auf den ersten Blick scheint Zeit in der Ethik landläufig keine besondere Rolle zu spielen. Im Nachvollzug der maßgeblichen Diskurse kommt immer wieder der Eindruck auf, die jeweils verhandelten Sachverhalte seien zeitlose Gebilde wie geometrische Figuren oder platonische Ideen. Auch der Mensch, von dem dabei als dem moralischen Subjekt die Rede ist, tritt vielfach als ein eigentümlich alters- und zeitloses Wesen in Erscheinung. So kann mitunter sogar der Anschein einer abstrakten Zeitenthobenheit des Ethischen überhaupt entstehen. Die diachrone Dimension der Prozessualität, des Geschehens, der Veränderung und Entwicklung, in der der Aspekt der Zeitlickeit ganz konkret erfahrbar wird, gerät in dieser Perspektive allenfalls als limitierender, epistemische Unschärfen und normative Geltungseinbußen bedingender Störfaktor in den Blick. Entsprechend ist die Bedeutung und Tragweite von Zeit und Zeitlichkeit in der Ethik bislang kaum systematisch reflektiert worden.

Social categorizations regarding gender or age have proven to be relevant in human-robot interaction. Their stereotypical application in the development and implementation of robotics in eldercare is even discussed as a strategy to enhance the acceptance, well-being, and quality of life of older people. This raises serious ethical concerns, e.g., regarding autonomy of and discrimination against users. In this paper, we examine how relevant professional stakeholders perceive and evaluate the use of social categorizations and stereotypes regarding gender and age in robotics for eldercare. Based on 16 semi-structured interviews with representatives from technology development, industry, and nursing science as well as practice, we explore the subjects’ awareness, evaluations, and lines of argument regarding the corresponding moral challenges. Six different approaches of dealing with categorizations and stereotypes regarding gender and age in care robotics for older people are identified: negation, functionalistic relativization, explanation, neutralization, stereotyping, and queering. We discuss the ethical implications of these approaches with regard to professional responsibility and draw conclusions for responsible age tech in pluralistic societies.

The elderly are often considered a vulnerable group in public and academic bioethical debates and regulations. In this paper, we examine and challenge this assumption and its ethical implications. We begin by systematically delineating the different concepts of vulnerability commonly used in bioethics, before then examining whether these concepts can be applied to old age. We argue that old age should not, in and of itself, be used as a marker of vulnerability, since ageing is a process that can develop in a variety of different ways and is not always associated with particular experiences of vulnerability. We, therefore, turn to more fundamental phenomenological considerations in order to reconstruct from a first person perspective the intricate interconnections between the experiences of ageing and vulnerability. According to this account, ageing and old age are phenomena in which the basic anthropological vulnerability of human beings can manifest itself in an increased likelihood of harm and exploitation. Thus, we plead for a combined model of vulnerability that helps to avoid problems related to the current concepts of vulnerability. We conclude first that old age as such is not a sufficient criterion for being categorized as vulnerable in applied ethics, and second that reflections on ageing can help to develop a better understanding of the central role of vulnerability in human existence and in applied ethics.

BackgroundThe increasing debate on financial incentives for organ donation raises concerns about a "commodification of the human body". Philosophical-ethical stances on this development depend on assumptions concerning the body and how people think about it. In our qualitative empirical study we analyze public attitudes towards organ donation in their specific relation to conceptions of the human body in four European countries (Cyprus, Germany, the Netherlands and Sweden). This approach aims at a more context-sensitive picture of what "commodification of the body" can mean in concrete clinical decisions concerning organ donation.ResultsWe find that moral intuitions concerning organ donation are rooted in various conceptions of the human body and its relation to the self: a) the body as a mechanical object owned by the self, b) the body as a part of a higher order embodying the self, and c) the body as a hierarchy of organs constitutive of the self.ConclusionThe language of commodification is much too simple to capture what is at stake in everyday life intuitions about organ donation and organ sale. We discuss how the plurality of underlying body-self conceptions can be taken into account in the ethical debate, pointing out consequences for an anthropologically informed approach and for a liberal perspective

ProblemAn estimated 100,000–500,000 migrant care workers provide live-in care in German households, many of them caring for older people with dementia. Social research has identified a wide range of structural social problems associated with live-in care. However, a systematic ethical analysis and discussion is still missing.ArgumentsThis article explores the moral conflicts that arise in the microsetting of live-in arrangements for people with dementia. For this purpose, we conduct an ethical analysis of the expectations of relatives towards live-in care for people with dementia based on a qualitative content analysis of 182 contributions from three German-language online forums. These expectations address live-ins as service providers, professional nurses, moral agents, and family members.ConclusionThe diverse and often disappointed expectations of relatives are an expression of problematic and partly contradictory claims regarding live-in care for people with dementia. An ethical analysis of their legitimacy and coherence can help to improve the individual arrangement, the institutional organisation, and the moral framing and legal regulation of live-in care.

Definition of the problemAdvance directives involve evaluative assumptions about the further course of one’s life that can be more or less appropriate and thus call for ethical reflection. This contribution focuses on the basis and criteria of such assumptions. We argue that considerations regarding the temporal structure of a good life constitute a particularly relevant perspective in this context.ArgumentsEmpirical studies on the individual composition of advance directives point to the important role of personal values and life plans that can change over time. Therefore, we first contextualize advance directives from the perspective of an ethics of the good life and then discuss their implications with regard to different levels of temporality, comprising fundamental parameters of human existence in time, cultural models of the life course, as well as narratives of the individual trajectory of life.ConclusionConceptions of a good life and its temporal structure represent an important perspective for drafting and interpreting advance directives. Their consideration provides a more nuanced understanding of the evaluative implications of advance care planning. This can benefit individual patients, service providers, as well as policy makers.

“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding of ethics,” addressing three different issues: the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, the normative relevance of such lay moralities for the justification of ethical decisions, and the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ.

Unsere Sicht der Demenz ist von kulturellen Metaphern geprägt. Sie ziehen Analogien zu vertrauten Erfahrungsbereichen und eröffnen so ein Verständnis von einem ansonsten schwer fassbaren und letzten Endes unergründlichen Geschehen. In zeitgenössischen Diskursen über die Demenz spielen insbesondere zwei biographische Metaphern eine maßgebliche Rolle: die der,Rückkehr in die Kindheit‘ und die des,Todes bei lebendigem Leib‘. Der Beitrag unterzieht beide Vorstellungen einer kritischen Reflexion. Er erläutert zunächst die kulturgeschichtliche Herkunft und Bedeutung der Kindheits- und Todesmetapher. Im Anschluss geht er ihren Implikationen für das Verständnis von Demenz und die Einstellungen und Verhaltensweisen gegenüber den Betroffenen nach. Dabei kommt eine Lebensverlaufsperspektive zum Tragen, die die Bedeutung der zeitlichen Erstreckung und Verlaufsstruktur des menschlichen Lebens für die ethische Theoriebildung systematisch zu berücksichtigen sucht. Auf diese Weise lässt sich verdeutlichen, dass beide Metaphern die Altersdemenz letztlich einem anderen Punkt des menschlichen Lebens angleichen und sie damit in je unterschiedlicher Weise als eine Art biographischer Normabweichung auffassen. Die Auseinandersetzung erlaubt Schlussfolgerungen mit Blick auf medizin- und pflegeethische Debatten um Selbstbestimmung, Stellvertreterentscheidungen und Vorausverfügungen im Kontext der Altersdemenz. Auf einer theoretisch-konzeptionellen Ebene verdeutlicht sie darüber hinaus auch die Bedeutung einer biographie- und kultursensiblen Perspektive für die ethische Theoriebildung im Allgemeinen.

The ongoing bioethical debate about organ markets rests not only on theoretical premises, but also on assumptions regarding public views of and attitudes toward organ donation that need closer socioempirical examination. Summarizing results from our previous qualitative social research in this field, this paper illustrates the ethical significance of such public moralities in two respects: On one hand, it analyzes the implicit bias of the common rhetoric of “organ scarcity” which motivates much of the commercialization debate. On the other hand, it explores the blind spots of the paradigm of “altruistic donation” which informs many arguments against commercialization. We conclude that the ethical discourse has to appreciate the social nature of organ donation as a reciprocal interaction between different parties with irreducibly different but equally relevant viewpoints. We criticize the neglect of such well-founded public considerations in certain philosophical-ethical approaches and stress the need for further systematic and comparative socioempirical studies about peoples’ actual perspectives in bioethics

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

The debate over financial incentives and market models for organ procurement represents a key trend in recent bioethics. In this paper, we wish to reassess one of its central premises—the idea of organ shortage. While the problem is often presented as an objective statistical fact that can be taken for granted, we will take a closer look at the underlying framework expressed in the common rhetoric of “scarcity”, “shortage” or “unfulfilled demand”. On the basis of theoretical considerations as well as a socioempirical examination of public attitudes, we will argue that this rhetoric has an economic subtext that imbues the debate with normative premises that have far-reaching social and ethical consequences and need to be made explicit and discussed

Die wachsende Nachfrage nach Anti-Aging-Medizin wirft die Frage auf, welche medizinischen Leistungen ein solidarisches Gesundheitssystem tragen sollte. Die deutsche Entscheidungspraxis beruft sich auf den Begriff der Krankheit. Im Blick auf Anti-Aging wäre demnach 1) zu klären, was der Krankheitsbegriff bedeutet, 2) zu prüfen, ob das Altern sich unter diesen Begriff subsumieren lässt, um 3) abzuleiten, inwieweit Anti-Aging-Maßnahmen zur Verfügung zu stellen sind. Dieses Prozedere führt jedoch zu keinem brauchbaren Ergebnis. Unter Berufung auf den Krankheitsbegriff allein ist der Umfang solidarischer Gesundheitsversorgung nicht zu bestimmen. Allerdings lässt sich durch Reflexion auftretender Probleme ein gangbarer Entscheidungsweg aufzeigen. Er sieht eine faire Verständigung über die Frage vor, wie wir alt werden wollen

Purpose Although the term “responsibility” plays a central role in bioethics and public health, its meaning and implications are often unclear. This paper defends the importance of a more systematic conception of responsibility to improve moral philosophical as well as descriptive analysis. Methods We start with a formal analysis of the relational conception of responsibility and its meta-ethical presuppositions. In a brief historical overview, we compare global-collective, professional, personal, and social responsibility. The value of our analytical matrix is illustrated by sorting out the plurality of responsibility models in three cases (organ transplantation, advance directives, and genetic testing). Results Responsibility is a relational term involving at least seven relata. The analysis of the relata allows distinguishing between individual versus collective agency, retrospective versus prospective direction, and liability versus power relations. Various bioethical ambiguities result from insufficient, implicit, or inappropriate ascriptions of responsibility. Conclusions A systematic conception of responsibility is an important tool for bioethical reflection. It allows an in-depth understanding and critique of moral claims on a meta-ethical level without presuming one particular normative approach. Considering the concept of responsibility can also help to complement the current bioethical focus on individual autonomy by including the perspectives of other actors, such as family members or social groups.

In this paper, we explore and discuss the use of the concept of being affected in biomedical decision making processes in Germany. The corresponding German term ‘Betroffenheit’ characterizes on the one hand a relation between a state of affairs and a person and on the other an emotional reaction that involves feelings like concern and empathy with the suffering of others. An example for the increasing relevance of being affected is the postulation of the participation of people with disabilities and chronic or acute diseases in the discourse, as partly realized in the German National Ethics Council or the Federal Joint Committee. Nevertheless, not only on the political level, the resistance against the participation of affected people is still strong; the academic debate seems to be cross-grained, too. Against this background, we explore the meaning and argumentative role of the concept of being affected as it is used by affected and lay people themselves. Our analysis is based on four focus group discussions in which lay people, patients and relatives of patients discuss their attitudes towards biomedical interventions such as organ transplantation and genetic testing. This setting allows for a comparison of how affected and non-affected people are concerned and deliberate about medical opportunities, but also of how they position themselves as being affected or non-affected with respect to (scientific) knowledge and morality. On this basis, we discuss the normative relevance of being affected for the justification of political participation

Ageing and vulnerability: A life course perspective. This contribution focuses on the interrelation of ageing and vulnerability. It aims to clarify how growing older makes us more vulnerable and susceptible to harm and impairment. I start from the discussion in applied ethics whether older people constitute a vulnerable group. It will turn out that common narrow conceptions of vulnerability do not provide a sufficient basis for a general equation of old age and vulnerability. Hence, I proceed by considering old age in the anthropological context of a fundamental human vulnerability as such. This opens a process perspective on the emergence, development, and transformation of vulnerability over the human life course.

Im Zeichen steigender Lebenserwartung, individualisierter Lebensentwürfe und wachsender medizinischer Eingriffsmöglichkeiten ist die Ethik herausgefordert, sich ausdrücklich und systematisch mit der Bedeutung der zeitlichen Erstreckung, Verlaufsstruktur und Einteilung unseres Lebens auseinanderzusetzen. Einen ersten Ansatzpunkt dazu bietet die im entwicklungspsychologischen und sozialwissenschaftlichen Bereich ausgebildete Lebensverlaufsperspektive. Am Beispiel des Alterns wird zunächst das Desiderat einer angemessenen ethischen Auseinandersetzung mit den normativen Aspekten menschlicher Zeitlichkeit aufgezeigt. Vor diesem Hintergrund werden die theoretischen Grundzüge der Lebensverlaufsperspektive umrissen und in ihrer Leistungsfähigkeit für die ethische Theoriebildung erörtert. Das Hauptaugenmerk liegt auf drei Konzepten: Altersnormen als normative Standards altersgemäßen Verhaltens, Phasenideale als evaluative Maßstäbe der Lebensabschnittsgestaltung sowie Ablaufpläne als diachrone Schemata lebensgeschichtlicher Vorgänge. Abschließend werden Anwendungsmöglichkeiten und Grenzen einer solchen Lebensverlaufsperspektive in der Ethik erörtert.

End-of-life decision making constitutes a major challenge for bioethical deliberation and political governance in modern democracies: On the one hand, it touches upon fundamental convictions about life, death, and the human condition. On the other, it is deeply rooted in religious traditions and historical experiences and thus shows great socio-cultural diversity. The bioethical discussion of such cultural issues oscillates between liberal individualism and cultural stereotyping. Our paper confronts the bioethical expert discourse with public moral attitudes. The paper is based on a qualitative study comprising 12 focus group discussions with religious and secular persons in the USA, Germany, and Israel. Considering the respective socio-political and legal frameworks, the thematic analysis focuses on moral attitudes towards end-of-life decision making and explores the complex interplay between individual preferences, culture, and religion. Our findings draw attention to the variety and complexity of cultural and religious aspects of end-of-life decision making. Although there is local consensus that goes beyond radical individualism, positions are not neatly matched with national cultures or religious denominations. Instead, the relevance of the specific situatedness of religious beliefs and cultural communities becomes visible: Their status and role in individual situations, for example, as consensual or conflicting on the level of personal perspectives, family relationships, or broader social contexts, e.g., as a majority or minority culture within a political system. As the group discussions indicate, there are no clear-cut positions anchored in “nationality,” “culture,” or “religion.” Instead, attitudes are personally decided on as part of a negotiated context representing the political, social and existential situatedness of the individual. Therefore, more complex theoretical and practical approaches to cultural diversity have to be developed.

This book focuses on ageing as a topic of philosophical, theological, and historical anthropology. It provides a systematic inventory of fundamental theoretical questions and assumptions involved in the discussion of ageing and old age. What does it mean for human beings to grow old and become more vulnerable and dependent? How can we understand the manifestations of ageing and old age in the human body? How should we interpret the processes of change in the temporal course of a human life? What impact does old age have on the social dimensions of human existence? In order to tackle these questions, the volume brings together internationally distinguished scholars from the fields of philosophy, theology, cultural studies, social gerontology, and ageing studies. The collection of their original articles makes a twofold contribution to contemporary academic discourse. On one hand, it helps to clarify and deepen our understanding of ageing and old age by examining it from the fundamental point of view of philosophical, theological, and historical anthropology. At the same time, it also enhances and expands the discourses of philosophical, theological, and historical anthropology by systematically taking into account that human beings are essentially ageing creatures.

Die individuellen und gesellschaftlichen Folgen des demographischen Wandels rücken moralische Fragen, die den angemessenen Umgang mit älteren Menschen und die sinnvolle Gestaltung des Lebens im Alter betreffen, verstärkt in den Mittelpunkt öffentlicher Aufmerksamkeit sowie medizin- bzw. pflegeethischer und gesundheitspolitischer Auseinandersetzungen. Allerdings wird das Altern als Prozess und das höhere Alter als Lebensphase in vielen dieser medizin- bzw. pflegeethischen und gesundheitspolitischen Debatten zumeist lediglich unter dem spezifischen Gesichtspunkt der jeweils erörterten Praktiken, Fragestellungen und Problemlagen thematisiert. Eine Betrachtung, die diese verschiedenen konkreten Praxis- und Diskussionskontexte übergreift, das in ihnen jeweils vorausgesetzte Verständnis des Alter(n)s als solches thematisiert und in seiner Bedeutung für die ethische Fachdiskussion grundsätzlich reflektiert, findet dagegen kaum statt. Die Arbeitsgruppe „Altern und Ethik“ in der Akademie für Ethik in der Medizin soll zur Entwicklung einer solchen grundlegenderen und umfassenderen Betrachtungsweise beitragen. Der vorliegende Beitrag gibt einen ersten orientierenden Überblick über die zentralen Themenschwerpunkte, Problemstellungen und Kontroversen in den aktuellen medizin- bzw. pflegeethischen und gesundheitspolitischen Diskursen um das Alter(n) und markiert offene Fragen und Forschungsdesiderate. Wie sich dabei zeigt, kann eine eingehendere Auseinandersetzung mit dem Alter(n) nicht nur den einschlägigen alter(n)sbezogenen Fachdebatten zu fundierteren Perspektiven verhelfen, sondern auch der ethischen Diskussion insgesamt wichtige Impulse im Hinblick auf ihre anthropologischen Grundlagen und ihren normativen Bezugsrahmen vermitteln.

Definition of the problemThe concept of privacy has been astonishingly absent in the discussion about dementia care. In general, questions of privacy receive a lot of attention in nursing ethics; however, when it comes to dementia care, hardly any systematic ethical debate on the topic can be found. It almost seems as though people with dementia had lost any comprehensible interest in privacy and no longer had any private sphere that needed to be considered or protected. However, this not only contradicts widespread moral intuitions but also ignores the views and needs of those affected.ArgumentsWe first outline the origins and dimensions of the concept of privacy and point out problems and limitations in the context of dementia. Especially the prevalent liberal conceptions’ dependence on the idea of autonomy poses significant challenges to an adequate conceptualization of the moral significance of privacy for people with dementia. Therefore, we subsequently explore alternative ways of conceptualizing the “value of privacy” in the context of dementia care.ConclusionAutonomy-based concepts of privacy may still be valid in the early stages of dementia. However, in the further course of the syndrome, the relevance of other normative aspects comes to the fore, especially respect for remaining personal preferences as well as objective criteria of dignity and well-being. Thus, we outline in a differentiated manner how and to what extent privacy can be of normative importance beyond the purview of autonomy and should consequently be taken into consideration in dementia care.