Silke Schicktanz

Background Despite the great benefits of intelligent assistive technology (IAT) for dementia care – for example, the enhanced safety and increased independence of people with dementia and their caregivers – its practical adoption is still limited. The social and ethical issues pertaining to IAT in dementia care, shaped by factors such as culture, may explain these limitations. However, most studies have focused on understanding these issues within one cultural setting only. Therefore, the aim of this study was to explore and compare the attitudes of Israeli and German dementia experts toward IAT in dementia care, to contribute to a more cultural-comparative perspective. Methods Semi-structured interviews were conducted with 35 experts (15 Israelis and 20 Germans) in key roles in health and community services for people with dementia as well as in the fields of dementia and IAT (e.g., computer science, electrical/biomedical engineering, ethics, nursing, and gerontology). Thematic content analysis was used to analyze the data. Findings Israeli and German experts identified the same social accelerators in the development and implementation of IAT in dementia care (i.e., changes in family structure and social digitization) and benefits of adopting IAT (e.g., enhancing the safety of people with dementia and increasing their independence). However, there were differences in inhibitor/risk assessments between the two groups. Namely, economic considerations and the cognitive capacity of people with dementia were identified by both groups as inhibitors, while Israeli experts additionally reported stigma and ageism. Whereas both groups agreed that IAT might reduce human connection, and that the technology is not yet reliable enough, German experts highlighted concerns regarding privacy; in contrast, Israeli experts prioritized safety over privacy. Conclusions Our research findings allow for the identification of relevant similarities but also important differences between German and Israeli experts’ perspectives. As such, an important basis has been provided for a more in-depth discussion regarding where, why, and how culturally-sensitive technology development is needed.

Healthcare provision, like many other sectors of society, is undergoing major changes due to the increased use of data-driven methods and technologies. This increased reliance on big data in medicine can lead to shifts in the norms that guide healthcare providers and patients. Continuous critical normative reflection is called for to track such potential changes. This article presents the results of an interview-based study with 20 German and Swiss experts from the fields of medicine, life science research, informatics and humanities of digitalisation. The aim of the study was to explore expert opinions regarding current challenges and opportunities related to data-driven medicine and medical research and to provide a methodological framework for empirically grounded, continuous normative reflection. To this end, we developed a heuristic tool to map and structure empirical findings for normative analysis. Using this tool, our interview material points to a polarisation between individualistic and collectivistic orientated argumentations among experts. The study shows that a multilevel analysis is required to deal with complex normative implications of data-driven approaches in medical research and healthcare.

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.

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

Das deutsche Gesundheitswesen steht durch die schnell steigende Anzahl an CO- VID-19-Erkrankten vor erheblichen Herausforderungen. In dieser Krisensituation sind alle Beteiligten mit ethischen Fragen konfrontiert, beispielsweise nach gerech- ten Verteilungskriterien bei begrenzten Ressourcen und dem gesundheitlichen Schutz des Personals angesichts einer bisher nicht therapierbaren Erkrankung. Daher werden schon jetzt klinische und ambulante Ethikberatungsangebote verstärkt mit Anfragen nach Unterstützung konfrontiert. Wie können Ethikberater*innen Entscheidungen in der Krankenversorgung im Rahmen der COVID-19-Pandemie unterstützen? Welche Grenzen von Ethikberatung sind zu beachten? Bislang liegen hierzu noch wenige praktische Erfahrungen vor. Angesichts der dynamischen Entwicklung erscheint es der Akademie für Ethik in der Medizin (AEM) wichtig, einen Diskurs über die angemessene Rolle der Ethikberatung bei der Bewältigung der vielfachen Heraus- forderungen durch die COVID-19-Pandemie zu führen und professionelle Hinweise zu geben. Mit dem vorliegenden Diskussionspapier möchte die AEM einen Beitrag zur Beantwortung wesentlicher Fragen leisten, die sich für die Ethikberatung in den verschiedenen Bereichen des Gesundheitswesens stellen. Sie regt an, diesen Dis- kurs weiter zu führen und hat ein Online-Forum (s. unten) eingerichtet, in dem Ethikberater*innen ihre Erfahrungen teilen und die professionelle Selbstreflexion der Ethikberatung in Pandemiezeiten mit Anregungen fördern können.

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

“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.

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.

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.

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

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

“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.

This volume presents the ethical implications of risk information as related to genetics and other health data for policy decisions at clinical, research and societal levels. Ethical, Social and Psychological Impacts of Genomic Risk Communication examines the introduction of new types of health risk information based on faster, cheaper and larger sets of genetic or genomic analysis. Synthesising the results of a five-year interdisciplinary project, it explores the unsolved ethical and social questions around the sharing of this data, such as: What is best practice in risk communication? What are the normative presumptions and ethical consequences of an increased individual responsibility for ones' health? And how does one deal with the gap between the knowledge of risk and the lack of therapeutic options which often exist for complex diseases, such as dementia or some types of cancer? Drawing on contributions from over twenty experts in the field, this collection examines these questions from a liberal bioethics' perspective, advocating for contextual and cultural-sensitive ethical discussions. This book will be of great interest to students and scholars of theoretical and clinical medical ethics, medical sociology, risk communication and ethics of risk, as well as professionals in clinical genetics.

Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer’s disease at a presymptomatic stage. Popular demand for testing is increasing despite the lack of cure and effective prevention options and despite uncertainties regarding the predictive value of biomarker tests. This underscores the relevance of the ethical, cultural and social implications of predictive testing and the need to advance the bioethical debate beyond considerations of clinical consequences. Our qualitative study included three groups of affected persons: People with mild neurocognitive disorder, their relatives and family caregivers of people with dementia. We explored their moral motivations regarding predictive, biomarker-based testing and preclinical diagnostics. We interviewed affected individuals in Germany and Israel. Transcripts of 12 focus groups and 12 semistructured interviews were content analysed with a focus on the moral motivations of affected persons in their justification of why they accept or reject predictive testing and early diagnosis. We grouped the underlying aspects of moral motivation into four ethical categories: beneficence as a form of personal utility focusing on well-being, the ties of responsibility linking families and their individual members, the importance of self-determination by later life planning and notions of a good life. In general, cultural parallels among these motives were very obvious. Cultural variation occurred mainly in openness to suicide, scepticism about test validity and emphasis on personal autonomy. The study underscores the importance of counselling for life-planning issues and of informing test candidates about problems with test validity and about the ambiguity of test results. All data relevant to the study are included in the article or uploaded as supplementary information.

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.

Goal: To assess public knowledge and attitudes towards the family’s role in deceased organ donation in Europe. Methods: A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-mortem organ retrieval. Screening and data collection were performed by two or more independent reviewers for each record. Results: Of the 1482 results, 467 studies were assessed in full-text form, and 33 were included in this synthesis. When the deceased has not expressed any preference, a majority of the public support the family's role as a surrogate decision-maker. When the deceased expressly consented, the respondents' answers depend on whether they see themselves as potential donors or as a deceased's next-of-kin. Answers also depend on the relationship between the deceased and the decision-maker(s) within the family, and on their ethnic or cultural background. Conclusions: Public views on the authority of the family in organ donation decision-making require further research. A common conceptual framework and validated well-designed questionnaires are needed for future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation.

Unter dem Begriff ›Anti-Aging‹ wird seit etwa drei Jahrzehnten eine wachsende Anzahl medizinischer wie außermedizinischer Präparate bzw. Verfahren konzipiert, entwickelt und eingesetzt, die allgemein der Bekämpfung des Alterns dienen sollen. Die so genannte Anti-Aging-Medizin will in den Alterungsprozess des menschlichen Körpers eingreifen, um ihn zu verlangsamen, aufzuhalten oder rückgängig zu machen. Dabei variieren die konkreten Angriffspunkte, Vorgehensweisen und Zielsetzungen der einzelnen Ansätze durchaus beträchtlich.

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.

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.

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.

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.

This chapter gives a brief overview of the composition of the volume and explains why it is important to undertake a detailed scholarly analysis and comparison of the following ethico-legal regimes of surrogacy and egg donation: the permissive-unregulated but transitory regime of India; the permissive regime of Israel, although highly regulated by professional, medical and religious norms, and the extremely restrictive regime of Germany, being legally permeable for particular forms of cross-border reproductive practice despite the non-permissive national law. It uses an interdisciplinary lens to examine how the ethical, social, legal and cultural issues are interwoven in each regime. Moreover, we highlight the importance of a comparative analysis to understand how local developments cannot be isolated from each other, but deeply influence each other through transnational markets, modern media and the transfer of knowledge, people and body parts.

My following comparative analysis is based on two main questions: How can we best understand and describe the social practices of modern medicine in a particular cultural context? And: What can we learn for our moral thinking from such a comparative approach? I will answer these two questions by engaging the comprehensive studies from law, medical sociology/anthropology and ethics in this volume from three different cultural/national contexts: Germany, Israel and India in a fictional, comparative discourse. Hereby, I identify three cross-themes of surrogacy which I will discuss from a normative point of view: unsolved ethical concerns such as exploitation, child’s best interest and unethical motivations, a naturalised parenthood as global-cultural imperative, and the need for transnational discourses beyond relativism.

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.