Silke Schicktanz

Infections spread, and stories are composed: The difference between the two forms of communicability ‒ transmission and representation ‒ opens a space for reflecting on what illness means. The contributors focus on the moral and social dimensions involved in narrating pandemics, analyzing how urban dwellers, vaccine sceptics, medical experts, factory workers, colonial administrators, colonial subjects, and fictional characters try to make sense of biological threats and their implications for social order, freedom, and solidarity. The figures who populate these factual and fictional stories agree on very little in terms of treatment and prevention, but they all have one thing in common: they deploy stories against the spread of disease.

The growing number of older adults with dementia is increasingly being met with technological interventions. Among them are GPS-tracking devices that assist people with dementia (PwD) with orientation. The extent to which this technology should be utilized, and how to balance safety, mobility, and privacy has been the subject of extensive scholarly debate. To evaluate the range of normative attitudes of lay people towards the issue, we conducted an online citizens’ jury (CJ) with 17 German citizens aged 18 to 67. To examine the relationship between individual perspectives and collective attitudes, we further conducted qualitative interviews with participants. As part of the CJ process, participants collaboratively authored a comprehensive policy proposal containing nuanced views on ethical and technical aspects. Despite differing perspectives, particularly on the meaning of autonomy, participants reached broad consensus on issues such as informed consent, data protection, and device customization, and were able to agree to disagree on more contentious points. Our analysis demonstrates the capacity of lay participants to engage in ethical reflection, achieve consensus, and navigate disagreement. We further reflect on methodological considerations and examine the contribution lay deliberation can provide to contemporary bioethical debates. The online CJ format enabled in-depth, structured deliberation among diverse lay participants on a complex bioethical topic. The use of video conferencing software allowed for wide geographic participation. Combining the CJ with qualitative interviews and field notes provided rich insight into both collective and individual normative attitudes.

Current challenges in medicine and healthcare raise new questions regarding the moral relations between generations, thus highlighting the increasing relevance of intergenerational perspectives in healthcare ethics. However, the underlying notions of generations often remain vague and heterogeneous. This contribution aims to clarify the scope of conceptual meanings of ‘generation’ through explication and differentiation in order to advance the analytical potential of intergenerational perspectives in healthcare ethics. We argue that the concept of generations needs theoretical elaboration with regard to the dimensions of collectivity and temporality. We first introduce three approaches towards the theoretical conceptualization of generations: a genealogical, a chronological, and a socio-cultural approach. Regardless of their differences, all three essentially share an understanding of generations as collectives situated in time. Accordingly, we then examine the scope of underlying notions of collectivity and temporality, touching upon fundamental ontological, epistemological, and moral philosophical implications. We distinguish a skeptical individualist, an aggregationist, and an entity view of collectivity, as well as a formal, linear, a subjective, existential-narrative, and a socio-cultural understanding of temporality. The combination of these dimensions allows the development of a systematic matrix of conceptions of generations and intergenerational relations in healthcare ethics whose analytical potential we illustrate with regard to three paradigmatic examples. We provide a systematic summary of our considerations and outline a research agenda that addresses desiderata for intergenerational perspectives in healthcare ethics, encompassing clinical ethics, research ethics, and public health ethics, as well as meta-ethical questions.

Some would argue that there is a moral obligation to make the personal health data stored in databases and biobanks available for secondary research use. Yet, it is unclear what ways to gain consent to use the stored data for secondary research purposes are both effective and respectful of the patient’s autonomy. One prominent example under discussion is broad consent. As a form of consent in which specific study objectives are not defined, it is seen by many as an efficient alternative to the established consent of participants. Research on subjects' attitudes towards and their discursive reflections on broad consent is, however, limited. With our study, we aimed to gain deeper insights into the views and (normative) attitudes towards broad consent by members and representatives of patient organizations. Semi-structured interviews were conducted with members (N = 13) and representatives (N = 9) of German patient organizations. Subsequently, we evaluated the material using content analysis. The results initially indicate a general agreement with broad consent among members and representatives of patient organizations. In contrast to the results of some existing studies on broad consent, our analysis reveals limitations in this regard: Positive assessments relate less to broad consent in particular, but rather to overarching regulations on secondary data use that deviate from broad consent. Broad consent is criticized for exactly what it was originally intended to regulate: reduced flow of information, lack of a concrete and communicated research objective, and coverage of (too) long periods of time. The interviewees often formulated specific ideas and wishes about appropriate procedures for consenting to secondary data use, i.e., specific governance structures, thus (implicitly) conceptualizing "informed consent" as the gold standard of consent procedures. The interviewees consider the provision of data for secondary use to be important for the improvement of treatment methods, freedom of research, and ethical considerations such as reciprocity. However, these values are linked to conditions in the stakeholders' considerations and thus appear less absolute and universal than conditional and situated. Qualitative, empirical-ethical research can make this inherent complexity of ethical attitudes of stakeholders as negotiation processes tangible and fruitful for medical ethical practice.

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.

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.

Background The parallel growth of population ageing and international migration have introduced a unique population of transnational caregivers in elder care. Particularly for only children who face conflicting obligations and reduced caregiving resources, smart home devices could be technical tools to care for older parents from a distance. Research towards the use of these technologies has unearthed ethical issues such as privacy, autonomy, stigma and beneficence, but has not been fully explored in distance care. In this paper, we explore the ethical issues expressed by a group of only children towards integrating assistive, monitoring, and robotic technologies in their transnational care plans. Methods Purposive snowball sampling was used for the recruitment of 26 distance caregivers aged between 28 and 45, who were their parent’s only children. They lived in Europe for at least 5 years, with at least one parent residing in the home country. In semi-structured interviews, participants discussed the ethical issues of wearable devices, ambient and visual remote monitoring technologies, as well as the possible use of one assistive robot in the context of distance caregiving for older parents. We used the applied thematic analysis methodology to analyze the data. Results We highlight two ethical considerations. First, participants saw the need for maximizing good outcomes in caring for their older parents and fulfilling their responsibilities to ensure their health and safety, balanced against the respect for the parents’ autonomy, dignity, and privacy. Second, they weighed the benefits and harms of technologies at a distance to provide companionship and support against the intrinsic value placed on care received from one’s only child. Conclusions Discussions to involve technologies in elder care at a distance prompted complex decision-making processes to balance, weigh, and rationalize their ethical concerns as foreseen by the caregivers. The importance of maximizing the health and safety of older parents came at an unavoidable cost of the respect to autonomy, privacy, and dignity. Participants valued their own emotional connection and relationship to their parents, which they prioritized above the instrumental value of technological support. We further discuss our findings within the ethics of care theory and concepts within transnational care literature to make sense of the broader ethical implications of this empirical study.

In recent years, medical research has sparked hope that up to a third of dementia cases could be prevented. This optimism is driven by a shift in the understanding of dementia and, in particular, Alzheimer’s Disease (AD)—from being a rapid-onset brain disease in later life to a condition strongly linked to lifestyle factors, progressing slowly and gradually through asymptomatic, pre-symptomatic, and symptomatic stages with varying degrees of severity. Accompanying this evolving perception, the use of mobile healthcare applications (mHealth apps) based on dementia prevention research has been on the rise. Health policymakers and companies increasingly advocate for these apps. However, concerns remain about the medical quality of such mHealth apps for dementia prevention. Bioethical research has highlighted significant challenges associated with their use. This paper critically examines dementia prevention strategies through the lenses of mHealth technologies. Exploring four mHealth apps for dementia prevention as case studies, we identify and analyze unsolved ethical issues related to primary, secondary, and tertiary prevention. Hereby we offer a new perspective on familiar ethical dilemmas in dementia prevention, and emphasize the need to examine potentially intensified challenges in the context of digital health in the future in more depth.

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.

Background Consent policies for post-mortem organ procurement (OP) vary throughout Europe, and yet no studies have empirically evaluated the ethical implications of contrasting consent models. To fill this gap, we introduce a novel indicator of governance quality based on the ideal of informed support, and examine national differences on this measure through a quantitative survey of OP policy informedness and preferences in seven European countries. Methods Between 2017–2019, we conducted a convenience sample survey of students (n = 2006) in Austria (AT), Belgium (BE), Denmark (DK), Germany (DE), Greece (GR), Slovenia (SI) and Spain (ES), asking participants about their donation preferences, as well as their beliefs and views about the policy in place. From these measures, we computed indices of informedness, policy support, and fulfilment of unexpressed preferences, which we compared across countries and consent systems. Results Our study introduces a tool for analyzing policy governance in the context of OP. Wide variation in policy awareness was observed: Most respondents in DK, DE, AT and BE correctly identified the policy in place, while those in SI, GR and ES did not. Respondents in opt-out countries (AT, BE, ES and GR) tended to support the policy in place (with one exception, i.e., SI), whereas those in opt-in countries (DE and DK) overwhelmingly opposed it. These results reveal stark differences in governance quality across countries and consent policies: We found a preponderance of informed opposition in opt-in countries and a general tendency towards support–either informed or uninformed–in opt-out countries. We also found informed divergence in opt-in countries and a tendency for convergence–either informed or uninformed–among opt-out countries. Conclusion Our study offers a novel tool for analyzing governance quality and illustrates, in the context of OP, how the strengths and weaknesses of different policy implementations can be estimated and compared using quantitative survey data.

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

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.

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