Silke Schicktanz

ZusammenfassungIm Spielfilm Never Let Me Go werden Klone als vulnerable und heteronome Individuen dargestellt, die zur anonymen Organspende gezwungen werden. In diesem Beitrag wird die Darstellung dieser Figuren in ihrer individuellen Entwicklung und gesellschaftlichen Sozialisation unter der Frage untersucht, welche Bezüge sich zu bioethischen Aspekten ergeben. Die Klone befinden sich in einer Situation der „privilegierten Deprivation“: Aus Sicht der Zuschauer sind sie sozial benachteiligt und können sich nicht zu komplett autonomen Wesen entwickeln, aber aus ihrer eigenen Perspektive sind sie im dystopischen System immer noch „privilegiert“. Wir argumentieren, dass dieser Film auf symbolische Weise diejenigen Individuen fokussiert, die vom medizinischen Fortschritt nicht profitieren oder die nicht genügend Handlungsspielraum haben, um sich gegen geltende Praxen zu positionieren. Filme wie Never Let Me Go können deshalb ein Beitrag sein, um die Perspektive marginalisierter Personen im medizinischen System einzunehmen.

National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople were asked to discuss similar scenarios involving the withholding or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both countries, respect for patient autonomy and patients’ wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient’s wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture.

BackgroundDuring a commercial surrogacy arrangement, the event of embryo transfer can be seen as the formal starting point of the arrangement. However, it is common for surrogates to undergo a failed attempt at pregnancy conception or missed conception after an embryo transfer. This paper attempts to argue that such failed attempts can be understood as a loss. It aims to reconstruct the experiences of loss and grief of the surrogates and the intended parents as a consequence of their collective failure to conceive a surrogate pregnancy.MethodsDrawing on a qualitative study conducted over a period of eight months between 2014 and 2015 at two fertility clinics in Delhi and two in Kolkata, India, this paper examines the experiences of the surrogates and the intended parents when faced with missed conceptions or failed conceptions during a surrogacy arrangement.ResultsWe argue that while the surrogate grieves the non-arrival of a ‘good news’ as an uncertain loss, the intended parents experience yet another, failure in addition to the losses they might have incurred during their previous fertility treatments. The body of the surrogate becomes a site of ‘a lost opportunity’. The surrogate embodies a loss in her quest to achieve social mobility and the intended parents experience a disembodied pregnancy loss. This very emotional experience stands in stark contrast to the conceptualisation of such failed attempts as non-events within the discourse of the surrogacy industry. The experience of loss of the intended parents is recognised but their grief is given no space. We argue that such ambiguity around the nature of losses resulting out of a missed or failed conception during surrogacy is an outcome of lack of interpersonal relationship between the surrogate and the intended parents.ConclusionsSince commercial surrogacy is a relational process, the only way in which the experiences of losses and failures of the actors at the preconception stage can be better addressed is through developing close sharing and understanding between each other through an ethics of care. Therefore, to nurture caring relationships, surrogacy needs to be understood as a moral commitment by –the surrogates and intended parents. To enable such a commitment, there is a need to reconsider the pre-defined and legally regulated professional duty of the doctors, agents and agencies. It cannot be a one-sided commitment, but has to have elements of mutuality.

Direct-to-consumer genetic testing has been available for several years now, with varying degrees of regulation across different countries. Despite a restrictive legal framework it is possible for consumers to order genetic tests from companies located in other countries. However, German laypeople’s awareness and perceptions of DTC GT services is still unexplored. We conducted seven focus groups with German laypeople to explore their perceptions of and attitudes towards commercial genetic testing and its ethical implications. Participants were critical towards DTC GT. Criticism was directed at health-related, predictive testing, while lifestyle tests were accepted and even welcomed to some extent. Participants expressed strong reservations regarding commercial provision of genetic diagnostics and expressed a lack of trust in respective companies. They preferred non-commercial distribution within the public healthcare system. Participants also expressed high expectations of physicians’ abilities to interpret information obtained via DTC GT companies and provide counseling. Legal restrictions on commercial distribution of genetic tests were opposed, with participants arguing that it should be available to consumers. DTC GT companies are not perceived as trustworthy when compared to the public healthcare system and its professional ethical standards and practices. Laypeople rated general consumer autonomy higher than their own concerns, thus recommending against strong legal regulation. We conclude that medicine’s trustworthiness may be negatively affected if commercial provision is not visibly opposed by the medical professions, while DTC GT companies may gain in trustworthiness if they adapt to standards and practices upheld in medicine.

ZusammenfassungDie enorme Bedeutung, die Patientenverfügungen in der aktuellen ethisch-rechtlichen Diskussion zukommt, steht in gewissem Widerspruch zur geringen öffentlichen Bereitschaft, eine solche abzufassen. Dies wirft die ethische Frage auf, welche Argumente für das Abfassen von Patientenverfügungen sprechen. Zentral sind hierbei strebensethische Aspekte, die auf das Wünschenswerte und Lebenskluge einer solchen Entscheidung abheben. Mit einem um die soziokulturelle Perspektive erweiterten Identitätskonzept lässt sich für die Patientenverfügung als sinnvolles Instrument der Selbst-Deutung und Lebensplanung argumentieren. Zugleich verweist die soziokulturelle Dimension auf neue ethische Probleme der Interpretation durch Dritte und der Stellvertreterrolle. Dabei wird ein Defizit in der sozial-empirischen und ethischen Auseinandersetzung um die Bedeutung von Interpretation, Beratung und Verantwortung von Stellvertretern offenkundig.

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.

Definition of the problem: The transplantation of animal tissue and organs (xenotransplantation) is touted as one of the future options for transplantation medicine. This technology implies many unsolved practical and ethical problems. Arguments and conclusion: The article discusses the medico-ethical problems faced by patients, physicians, and the public in clinical trials. The problems involved in weighing chances and risks are classified and discussed. Additionally, parallels between the debate on handling HIV in the 1980 s and xenozoonoses today point to possible scenarios for future debate

Der Beitrag analysiert Techniken öffentlicher Gesundheitskommunikation und skizziert im Ausblick Minimalbedingungen für ihre ethische Vertretbarkeit. Dazu wird erstens an einem aktuellen Beispiel veranschaulicht, wie mittels Text und Bild die Öffentlichkeit überzeugt werden soll, ein bestimmtes Gesundheitsverhalten an den Tag zu legen. Zweitens werden anhand der internationalen Ethik-Debatte fünf Grundtypen von Techniken in der Gesundheitskommunikation (Information, Argumentation, Persuasion, Manipulation und Zwang) rekonstruiert und entlang von Mittel, Zweck, Folgen für Adressaten sowie Implikationen für Autonomie aus ethischer Sicht unterschieden. Am besonders ambivalenten Beispiel der Persuasion wird dann drittens diskutiert, welche ethischen Fallstricke es bei Gesundheitskommunikation zu bedenken gibt. Schließlich zeigen wir argumentativ auf, dass es in sensiblen bioethischen Themenfeldern wichtig ist, zwischen verschiedenen Techniken der Gesundheitskommunikation analytisch zu differenzieren. Ziel sollte die Ermöglichung einer fairen und transparenten Diskussion für breite Bevölkerungsgruppen sein.

Healthcare collectives, such as patient organizations, advocacy groups, disability organizations, professional associations, industry advocates, social movements, and health consumer organizations have been increasingly involved in healthcare policymaking. Such collectives are based on the idea that individual interests can be aggregated into collective interests by participation, deliberation, and representation. The topic of collectivity in healthcare, more specifically collective representation, has only rarely been addressed in bioethics. This symposium, entitled: “Collective Representation in Healthcare Policy” of the Journal of Bioethical Inquiry draws attention to this understudied topic from a variety of disciplines, within a variety of socio-cultural contexts. We draw attention to important ethical, cultural, and social questions, and into the practices, justifications for, and implications of collective representation of patients in healthcare policy.

Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing (DTC GT), currently is under ethical attack. A common critique aims at the limited validation of the tests as well as the risk of psycho-social stress or adaption of incorrect behavior by users triggered by misleading health information. Here, we examine in detail the specific role of advertising communication of DTC GT companies from a medical ethical perspective. Our argumentative analysis departs from the starting point that DTC GT operates at the intersection of two different contexts: medicine on the one hand and the market on the other. Both fields differ strongly with regard to their standards of communication practices and the underlying normative assumptions regarding autonomy and responsibility. Following a short review of the ethical contexts of medical and commercial communication, we provide case examples for persuasive messages of DTC GT websites and briefly analyze their design with a multi-modal approach to illustrate some of their problematic implications. We observe three main aspects in DTC GT advertising communication: (1) the use of material suggesting medical professional legitimacy as a trust-establishing tool, (2) the suggestion of empowerment as a benefit of using DTC GT services and (3) the narrative of responsibility as a persuasive appeal to a moral self-conception. While strengthening and respecting the autonomy of a patient is the focus in medical communication, specifically genetic counselling, persuasive communication is the normal mode in marketing of consumer goods, presuming an autonomous, rational, independent consumer. This creates tension in the context of DTC GT regarding the expectation and normative assessment of communication strategies. Our analysis can even the ground for a better understanding of ethical problems associated with intersections of medical and commercial communication and point to perspectives of analysis of DTC GT advertising.

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.

This book is the first to bring together an interdisciplinary collection of essays on surrogacy and egg donation from three socially, legally and culturally distinct countries - India, Israel and Germany. It presents contributions from experts in the field of social and cultural sciences, bioethics, law as well as psychology and provides critical-reflective comparative analysis of the socio-ethical factors shaping surrogacy and egg donation practices across these three countries. This book highlights the importance of a comparative perspective to ‘make sense’ of controversies and transitions in this highly contested area of artificial reproductive technologies. It demonstrates how local developments cannot be isolated from global events and vice versa. Therefore, this volume can be used as a standard reference for anyone seeking to understand surrogacy and egg donation from a macro-perspective in the next decade.

Background Biomarker research is gaining increasing attention focusing on the preclinical stages of the disease. Such interest requires special attention for communication and disclosure in clinical contexts. Many countries give dementia a high health policy priority by developing national strategies and by improving guidelines addressing disclosure of a diagnosis; however, risk communication is often neglected. Main text This paper aims to identify the challenges of disclosure in the context of dementia prediction and to find out whether existing clinical guidelines sufficiently address the issues of disclosing a dementia diagnosis and of disclosing the risk of developing dementia in asymptomatic and MCI stage. We will examine clinical guidelines and recommendations of three countries regarding predictive testing and diagnostic disclosure in dementia and Mild Cognitive Impairment to show their potentials and limits. This will provide a background to address ethical implications of predictive information and to identify ways how to proceed further. We will start by examining the guidelines and recommendations by focusing on what there is already and what is missing regarding the challenges of disclosing dementia prediction and MCI. Then, we will highlight the novel ethical issues generated by the shift to identify preclinical stages of the disease by biomarkers. We will argue for the need to develop guidelines for disclosing a risk status, which requires different considerations then disclosing a diagnosis of dementia. Finally, we will make some suggestions on how to address the gap and challenges raised by referring to German Stakeholder Conference, which presents us a good starting point to the applicability of involving stakeholders. Conclusions This paper underlines the need to develop empirically based guidelines that address the ethical and social strategies for risk communication of dementia prediction by genetic as well as non-genetic biomarkers. According to our analysis, the guidelines do not address the new developments sufficiently. International efforts should aim for specific guidelines on counseling, communicating risk and disclosing results. We argue that guidelines on disclosure should be developed by involving various stakeholders and should be informed by socio-empirical studies involving laypersons’ needs and wishes regarding risk communication.

Slippery slope‐, taboo‐breaking‐ or Nazi‐analogy‐arguments are common, but not uncontroversial examples of the complex relationship between bioethics and the various ways of using historical arguments in these debates. In our analysis we examine first the relationship between bioethics and medical history both as separate disciplines and as argumentative practices. Secondly, we then analyse six common types of historical arguments in bioethics (slippery slope‐, analogy‐, continuity‐, knockout/taboo‐, ethical progress‐ and accomplice‐arguments), some as arguments within the academic debate of bioethics, others as arguments within political and public debates over bioethical issues. We conclude by suggesting to bioethicists to better understand historical arguments as socially and culturally embedded practices of critical reflection of power, medical and government paternalism and possible future scenarios. More interdisciplinarity between ethicists and medical historians is needed to appropriately rationalize and understand the different legacies.

This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more.

Outsourcing clinical trials sponsored by pharmaceutical companies from industrialized countries to low- -income countries – summarized as transnational biomedical research – has lead to many concerns about ethical standards. Whether study participants are particularly vulnerable is one of those concerns. However, the concept of vulnerability is still vague and varies in its definition. Despite the fact that important international ethical guidelines such as the Declaration of Helsinki by the World Medical Association or the Ethical Guidelines for Biomedical Research Involving Human Subjects by the Council of International Organizations of Medical Sciences refer to vulnerability as ethical principle, each of their approaches are different. To overcome these shortcomings, we analyze and unite different approaches of vulnerability and develop practical criteria in order to operationalize the concept especially for the context of TBR. These criteria refer to the context of a study as well as the characteristics and the current living situation of study participants. Based on a case study of an HIV-vaccine-trial conducted in India we demonstrate how those criteria can be applied in a retrospective way to identify potential ethical conflicts. The criteria can also indicate a prospective function for ethical pre-assessment. For this, we provide an outlook for three major topics: 1. Vulnerability as a normative concept: Different ways of protection; 2. The relevance of transparency and 3. Vulnerability as an instrument to increase decision participation of human subjects.

ZusammenfassungFür die Medizinethik liegt ein großes Potential sozialempirischer Forschung in der Erhöhung der Kontextsensitivität, dem Sichtbarmachen von sozialen und institutionellen Rollen und dem Einbringen von Stimmen, die bislang zu wenig gehört worden sind. Diese Möglichkeiten bergen jedoch auch das Risiko, dass Deliberation und Argumentation durch Umfragen und Meinungserhebungen ersetzt werden. Der in den Sozialwissenschaften einsetzende participatory turn gibt Anlass, Anliegen und Methoden klassischer sozialempirischer Vorgehensweisen aus normativer Sicht zu hinterfragen. Eine Auseinandersetzung mit Konzeptionen von Betroffenheit, Öffentlichkeit und Expertise ist nicht nur aus methodologischen, sondern gerade auch aus normativen Gründen wichtig. Für die ethische Relevanz sind dabei die Idee der Argumentation und demokratietheoretische Überlegungen besonders erörterungswürdig. Wenn Bioethik Teil eines auch öffentlich verankerten Diskurses sein soll, ist die Frage nach der angemessenen Form der Berücksichtigung bestimmter Perspektiven ebenso im Kern bioethischer Reflexion zu verorten wie die Rechtfertigung spezieller ethischer Normen.

Given the need for organs, public organizations use social marketing strategies to increase the number of donors. Their campaigns employ a variety of moral appeals. However, their effects on audiences are unclear. We identified 14 campaigns in Germany from over the last 20 years. Our approach combined a multimodal analysis of categorized posters with a qualitative analysis of responses, collected in interviews or focus groups, of 53 persons who were either skeptical or undecided about organ donation. The combined analyses revealed that the posters failed to motivate laypersons in general to donate, and were even less effective on skeptical or undecided individuals. We explain this in terms of the types of moral messages found on posters and the limits of such social marketing strategies. Furthermore, we discuss certain ethical aspects of organ donation campaigns pertaining to communicating norms and trust in public institutions.

In clinical research – whether pharmaceutical, genetic or biomarker research – it is important to protect research participants’ autonomy and to ensure or strengthen their control over health-related decisions. Empirical–ethical studies have argued that both the ethical concept and the current legalistic practice of informed consent should be adapted to the complexity of the clinical environment. For this, a better understanding of recruitment, for which also the physician–patient relationship plays an important role, is needed. Our aim is to ethically reflect communication processes by identifying patterns used by physicians to motivate patients’ participation in clinical research and to assess whether patients also use these patterns in formulating their own research motivation. We conducted a secondary analysis with empirical data from a research project involving physicians and patients in a clinical research setting of a biomarker study for rectal cancer treatment. Our empirical data included observations of physician–patient consultations and semi-structured interviews with patients. Overall, we collected 93 interviews. We found two dominant communication patterns, which physicians applied for motivating patients to take part in this research study. Some forms of these patterns tend to mislead patients’ understanding, while others could justifiably be applied in this consultation setting without undermining patients’ autonomy. This insight that the physician–patient communication has a strong influence on patients increases the importance to strengthen physicians’ ethically acceptable communication patterns regarding research participation. We further suggest that there is a need for a critical reflection of the ethics committee’s requirements for information regarding research participation.

Als Xenotransplantation werden medizinische Interventionen bezeichnet, die die Transplantation oder Infusion lebender tierischer Zellen, Gewebe oder Organe in den Menschen beinhalten. Der Begriff schließt auch all jene Maßnahmen ein, in denen menschliche Körperflüssigkeiten, Zellen, Gewebe oder Organe exvivo in Kontakt mit lebenden tierischen Zellen, Gewebe oder Organen kommen. Im weiteren Sinne steht der Begriff Xenotransplantation für jede Form von artenübergreifender Transplantation.Der in der biomedizinischen Forschung seit Ende der 1990er Jahre vorrangig verfolgte Ansatz der Xenotransplantation zielt darauf ab, Schweine als Organquelle für den Menschen zu gewinnen und solide Schweineorgane wie Niere, Herz und Leber auf den Menschen zu verpflanzen. Hierfür müssen die Schweine gentechnisch verändert werden. Darüber hinaus wurden in einigen Fällen exvivo Schweinelebern auch zur temporären Perfusion eingesetzt, um akutes Leberversagen bei Patientinnen und Patienten zu überbrücken. Weitere Ziele sind u. a. der Einsatz von eingekapselten Inselzellen von Schweinen in der Diabetestherapie oder der Einsatz von fötalen Nervenzellen aus Schweinen in der Behandlung von Parkinsonpatienten. Die Transplantation von inaktiven Materialien tierischen Ursprungs, wie z. B. Herzklappen von Schweinen, fällt nicht unter diese Definition, da sie kein lebendes Gewebe mehr sind.

Assistive reproductive technologies are increasingly used to control the biology of fertility and its temporality. Combining historical, theoretical, and socio-empirical insights, this paper aims at expanding our understanding of the way temporality emerges and is negotiated in the contemporary practice of cryopreservation of reproductive materials. We first present an historical overview of the practice of cryo-fertility to indicate the co-production of technology and social constructions of temporality. We then apply a theoretical framework for analysing cryobiology and cryopreservation technologies as creating a new epistemic perspective interconnecting biology and temporality. Thereafter, we focus on the case of ‘social egg freezing’ to present socio-empirical findings illustrating different reproductive temporalities and their connection to the social acceptance of and expectations towards the practice. SEF is a particularly interesting case as it aims to enable women to disconnect their reproductive potential from their biological rhythms. Based on 39 open interviews with Israeli and German SEF users, the cross-cultural comparative findings reveal three types of attitudes: postponing motherhood/reproductive decisions ; singlehood and “waiting” for a partner ; and the planning of and hope for multiple children. For theory building, this analysis uncovers temporality formations embedded in gender and reproductive moral values; including the ‘extended present’, ‘waiting’, and ‘reproductive futurism’. We conclude by discussing the contribution of our findings by advancing the theoretical framework of ‘cryopolitics’ highlighting the theoretical implications and importance of gendered and cultural imaginaries constructing medical technological innovations and related temporalities.

This collection features comprehensive overviews of the various ethical challenges in organ transplantation. International readings well-grounded in the latest developments in the life sciences are organized into systematic sections and engage with one another, offering complementary views. All core issues in the global ethical debate are covered: donating and procuring organs, allocating and receiving organs, as well as considering alternatives. Due to its systematic structure, the volume provides an excellent orientation for researchers, students, and practitioners alike to enable a deeper understanding of some of the most controversial issues in modern medicine.

Predictive medicine presents opportunities to consider later life under conditions of illness, such as dementia. This paper examines how family caregivers (N = 27) assess the opportunity of prediction and early diagnosis of dementia for oneself based on their particular experience. Furthermore, it compares their attitudes with laypersons’ attitudes (N = 43) towards genetic testing of APOE. By this, we elaborate how much personal experience impacts anticipation and affects, but also moral attitudes towards predictive medicine. Differences in our settings do not allow for direct comparison, so our analysis focuses on multiple similarities in the assessments of predictive (non-genetic vs. genetic) testing. Groups’ reasoning showed also differences influenced mainly by personal experience. Family caregivers addressed more responsibility towards family and had more hopes into medical treatments. To cope with the disease, they expressed expectations to start with medicine and care decisions as early as possible. Laypersons, however, stressed self-determination more and expressed worries about the influence of the pharmaceutical industry by referring to unnecessary medication and, implicitly, the medicalization of aging.

ZusammenfassungDie enorme Bedeutung, die Patientenverfügungen in der aktuellen ethisch-rechtlichen Diskussion zukommt, steht in gewissem Widerspruch zur geringen öffentlichen Bereitschaft, eine solche abzufassen. Dies wirft die ethische Frage auf, welche Argumente für das Abfassen von Patientenverfügungen sprechen. Zentral sind hierbei strebensethische Aspekte, die auf das Wünschenswerte und Lebenskluge einer solchen Entscheidung abheben. Mit einem um die soziokulturelle Perspektive erweiterten Identitätskonzept lässt sich für die Patientenverfügung als sinnvolles Instrument der Selbst-Deutung und Lebensplanung argumentieren. Zugleich verweist die soziokulturelle Dimension auf neue ethische Probleme der Interpretation durch Dritte und der Stellvertreterrolle. Dabei wird ein Defizit in der sozial-empirischen und ethischen Auseinandersetzung um die Bedeutung von Interpretation, Beratung und Verantwortung von Stellvertretern offenkundig.