Silke Schicktanz

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

The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, which represent opposite regulatory approaches and bioethical debates concerning genetic testing. Three major themes of responsibility emerged from the inter-group and cross-cultural comparison: self-responsibility, responsibility for kin, and responsibility of society towards its members. National contrast was apparent in the moral reasoning of lay respondents concerning, for example, the right not to know versus the duty to know (self-responsibility) and the moral conflict concerning informing kin versus the moral duty to inform (responsibility for kin). Attitudes of respondents affected by genetic diseases were, however, rather similar in both countries. We conclude by discussing how moral discourses of responsibility are embedded within cultural (national, religious) as well as phenomenological (being affected) narratives, and the role of public engagement in bioethical discourse

Bioethicists tend to focus on the individual as the relevant moral subject. Yet, in highly complex and socially differentiated healthcare systems a number of social groups, each committed to a common cause, are involved in medical decisions and sometimes even try to influence bioethical discourses according to their own agenda. We argue that the significance of these collective actors is unjustifiably neglected in bioethics. The growing influence of collective actors in the fields of biopolitics and bioethics leads us to pursue the question as to how collective moral claims can be characterized and justified. We pay particular attention to elaborating the circumstances under which collective actors can claim ‘collective agency.’ Specifically, we develop four normative-practical criteria for collective agency in order to determine the conditions that must be given to reasonably speak of ‘collective autonomy’. For this purpose, we analyze patient organizations and families, which represent two quite different kinds of groups and can both be conceived as collective actors of high relevance for bioethical practice. Finally, we discuss some practical implications and explain why the existence of a shared practice of trust is of immediate normative relevance in this respect.

The moral discourse surrounding end-of-life (EoL) decisions is highly complex, and a comparison of Germany and Israel can highlight the impact of cultural factors. The comparison shows interesting differences in how patient’s autonomy and doctor’s duties are morally and legally related to each other with respect to the withholding and withdrawing of medical treatment in EoL situations. Taking the statements of two national expert ethics committees on EoL in Israel and Germany (and their legal outcome) as an example of this discourse, we describe the similarity of their recommendations and then focus on the differences, including the balancing of ethical principles, what is identified as a problem, what social role professionals play, and the influence of history and religion. The comparison seems to show that Israel is more restrictive in relation to Germany, in contrast with previous bioethical studies in the context of the moral and legal discourse regarding the beginning of life, in which Germany was characterized as far more restrictive. We reflect on the ambivalence of the cultural reasons for this difference and its expression in various dissenting views on passive euthanasia and advance directives, and conclude with a comment on the difficulty in classifying either stance as more or less restrictive

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.

Für 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

Zusammenfassung. Die Verpflanzung tierischer Organe (Xenotransplantation) wird als neue Zukunftsoption der Transplantationsmedizin gehandelt. Bei dieser Technik stellen sich zahlreiche ungelöste biomedizinische und ethische Probleme. Der Beitrag diskutiert vorrangig die medizinethischen Probleme für Patienten, Ärzte und Dritte, die sich bei klinischen Versuchen zur Verfügung stellen, und problematisiert die Abwägung der Chancen und Risiken. Zudem zeigen inhaltliche Parallelen zwischen den xenogenen Infektionsrisiken und der HIV-Debatte der 8oer Jahre mögliche Szenarien für den weiteren Debatten-Verlauf auf.

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.

‘Individualized medicine’ is an emerging paradigm in clinical life science research. We conducted a socio-empirical interview study in a leading German clinical research group, aiming at implementing ‘individualized medicine’ of colorectal cancer. The goal was to investigate moral and social issues related to physician–patient interaction and clinical care, and to identify the points raised, supported and rejected by the physicians and researchers. Up to now there has been only limited insight into how experts dedicated to individualized medicine view its problems. Interviews with researchers and clinicians were based on a prestructured questionnaire. The content analysis revealed a broad spectrum of opinions. Major findings were disappointments with the limits of the current therapy regimen and clinical practice; problematic impacts on physician–patient relationship; and an informed consent procedure which is mainly based on paternalistic assumptions. According to our analysis, major problems will be uncertainties related to the biomarker's sensitivity and specificity, and the identification of ‘non-responders’. However, the findings also indicate that experts expect evidence-based medicine to replace decisions based on gut feeling or hierarchical structures.