“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. (shrink)

Research in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE (...) study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

‘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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

Background: Several countries have recently changed their model of consent for organ donation from opt-in to opt-out. We undertook a systematic review to determine public knowledge and attitudes towards these models in Europe. Methods: Six databases were explored between 1 January 2008 and 15 December 2017. We selected empirical studies addressing either knowledge or attitudes towards the systems of consent for deceased organ donation by lay people in Europe, including students. Study selection, data extraction, and quality assessment were conducted by (...) two or more reviewers independently. Findings: Awareness of the consent model was lower in opt-out countries than in opt-in countries. A majority of the public agrees with opt-in, regardless of the law in their own country. There are ambivalent attitudes regarding the opt-out system. The public tend to prefer opt-in and mandatory choice over opt-out when several options are offered. Interpretation: The assumption that people in opt-out countries are aware of the legal requirements to be excluded from the pool of potential donors is not supported by the results of this review. This is a concern, since ignorance hinders people's autonomy regarding organ donation decision-making. Higher awareness of consent model in opt-in countries may reflect greater efforts to inform the public through campaigns to motivate donation. Legal moves towards opt-out are at odds with people's expressed preferences. Main limitations of this review are the lack of data from some countries, study population heterogeneity, and methodological shortcomings. (shrink)

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. (shrink)

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. (shrink)

“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. (shrink)

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. (shrink)

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. (shrink)

End-of-life decisions concerning euthanasia, stopping life-support machines, or handling advance directives are very complex and highly disputed in industrialized, democratic countries. A main controversy is how to balance the patient’s autonomy and right to self-determination with the doctor’s duty to save life and the value of life as such. These EoL dilemmas are closely linked to legal, medical, religious, and bioethical discourses. In this paper, we examine and deconstruct these linkages in Germany and Israel, moving beyond one-dimensional constructions of ethical (...) statements as “social facts” to their conflicting and multifaceted embedding within professional, religious, and cultural perspectives. (shrink)

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. (shrink)

There are not many international consensuses in the governance of biomedicine. One that exists concerns a general reluctance toward a commercialization of organ procurement. However, with reference to the problem of there is an increasingly louder call in ethical and legal discourse to and to establish a debate on financial incentives Other ethicists and jurists criticize this development, and warn of injustice, exploitation of the poor, and a commodification of the human body.

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. (shrink)

With the increasing attention paid to patient participation in both health care policy-making and health care research, McCoy and colleagues (2020) point to a key ethical issue, namely the quest fo...

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. (shrink)

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. (shrink)

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. (shrink)

Patient organizations are increasingly involved in national and international bioethical debates and health policy deliberations. In order to examine how and to what extent cultural factors and organizational contexts influence the positions of patient organizations, this study compares the positions of German and Israeli patient organizations (POs) on issues related to end-of-life medical care. We draw on a qualitative pilot study of thirteen POs, using as a unit of analysis pairs comprised of one German PO and one Israeli PO that (...) were matched on the basis of organizational category. Bioethical positions that emanated from the interviews concerned advance directives—general views, recent legal framework, and formalization; as well as active and passive euthanasia, withholding and withdrawing of treatment, and physician-assisted suicide. In addition to the unifying, within-country impact of cultural factors, we found that constituency-based organizations and partner organizations in both countries often share common views, whereas disease-based support organizations have very heterogeneous positions. We conclude by discussing how organizational contexts provide a source of uniformity as well as diversity in the positions of POs. (shrink)

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. (shrink)

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. (shrink)

Within the context of applied bioethical reasoning, various conceptions of the human body are focused upon by the author in relation to normative notions of autonomy.

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

Ethical reflection deals not only with the moral standing and handling of animals, it should also include a critical analysis of the underlying relationship. Anthropological, psychological, and sociological aspects of the human–animal-relationship should be taken into account. Two conditions, asymmetry and ambivalence, are taken as the historical and empirical basis for reflections on the human–animal-relationship in late modern societies. These conditions explain the variety of moral practice, apart from paradoxes, and provide a framework to systematize animal ethical problems in a (...) broader field. This allows the development of ideal relationships as moral orientation across anthropocentric or sentientistic ethical theories. These ideal relationships are called the patronage-model, the friendship-model and the partnership-model. The ethical problem of creating transgenic animals is discussed in the light of these ideal relationships. (shrink)

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. (shrink)

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. (shrink)

There is an ongoing expert debate with regard to financial incentives in order to increase organ supply. However, there is a lacuna of empirical studies on whether citizens would actually support financial incentives for organ donation.

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

The acquisition of genetic information (GI) confronts both the affected individuals and healthcare providers with difficult, ambivalent decisions. Genetic responsibility (GR) has become a key concept in both ethical and socioempirical literature addressing how and by whom decision-making with respect to the morality of GI is approached. However, despite its prominence, the precise meaning of the concept of GR remains vague. Therefore, we conducted a systematic literature review on the usage of the concept of GR in qualitative, socioempirical studies, to (...) identify the main interpretations and to provide conceptual clarification. The review identified 75 studies with primarily an Anglo-American setting. The studies focused on several agents: the individual, the family, the parent, the healthcare professional, and the institution and refer to the concept of GR on the basis of either a rational/principle-oriented approach or an affective/relational approach. A subtype of the rational/principle-oriented approach is the reactive approach. The review shows how the concept of GR is useful for analyzing and theorizing about socioempirical findings within qualitative socioempirical studies and also reveals conceptual deficits in terms of insufficient theoretical accuracy and heterogeneity, and in the rarity of reflection on cultural variance. The vagueness and multiplicity of meanings for GR in socioempirical studies can be avoided by more normative-theoretical explication of the underlying premises. This would provide a higher degree of differentiation of empirical findings. Thereby, the complex findings associated with the individual and social implications of genetic testing in empirical studies can be better addressed from a theoretical point of view and can subsequently have a stronger impact on normative and policy debates. (shrink)

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. (shrink)

ZusammenfassungDas Paradigma einer „personalisierten Medizin“ in der klinischen Forschung und Praxis wirft verschiedene Fragen nach Notwendigkeit, Erwartung, Chancen und Risiken auf. In einer laufenden empirisch-ethischen Studie untersuchen wir klinische Forscher- und Patientenperspektiven hinsichtlich des zukünftigen Einsatzes „personalisierter Medizin“ beim Rektumkarzinom. Ziel der Studie ist es, mittels Interviews mit Ärzten/forschern und Patienten und teilnehmender Beobachtung bei Arzt-Patient-Gesprächen ethisch relevante Aspekte der Erforschung und Behandlung im Kontext „personalisierter Medizin“ zu explorieren. Die Analyse von Unterschieden und Gemeinsamkeiten zwischen den Gruppierungen dient der Detektion (...) von Konfliktfeldern in der klinischen Praxis. Es zeigt sich, dass Patienten und Ärzte unterschiedliche Annahmen von „personalisierter Medizin“ haben. Dies könnte zu Konflikten in der klinischen Praxis führen, die so früh wie möglich geklärt werden sollten. (shrink)

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. (shrink)