Social categorizations regarding gender or age have proven to be relevant in human-robot interaction. Their stereotypical application in the development and implementation of robotics in eldercare is even discussed as a strategy to enhance the acceptance, well-being, and quality of life of older people. This raises serious ethical concerns, e.g., regarding autonomy of and discrimination against users. In this paper, we examine how relevant professional stakeholders perceive and evaluate the use of social categorizations and stereotypes regarding gender and age in (...) robotics for eldercare. Based on 16 semi-structured interviews with representatives from technology development, industry, and nursing science as well as practice, we explore the subjects’ awareness, evaluations, and lines of argument regarding the corresponding moral challenges. Six different approaches of dealing with categorizations and stereotypes regarding gender and age in care robotics for older people are identified: negation, functionalistic relativization, explanation, neutralization, stereotyping, and queering. We discuss the ethical implications of these approaches with regard to professional responsibility and draw conclusions for responsible age tech in pluralistic societies. (shrink)

Ein gelungenes Arzt-Patient-Verhältnis, das auf gegenseitigem Vertrauen und ärztlicher Verantwortung basiert, ist ein zentraler Bestandteil des Ideals der ärztlichen Profession. Aktuell wird vielfach von einem neuen „ökonomischen Paradigma“ in der Medizin gesprochen, das dieses Verhältnis vermeintlich unterminiert. Als ein wichtiges Merkmal dieses Paradigmas gilt das Verständnis vom Patienten als Kunden, der charakterisiert ist durch seine Selbstbestimmung bzw. Autonomie. Wie stellt sich die Kundenrolle nun aber bei vulnerablen Patientengruppen dar, die in ihrer Autonomie eingeschränkt sind, und was bedeutet dies wiederum für (...) das Arzt-Patient-Verhältnis? In dem vorliegenden Artikel wollen wir deshalb die Fragestellung verfolgen, ob sich ärztliche Verantwortung bzw. das Arzt-Patient-Verhältnis ändert, wenn sich der (vulnerable) Patient als Kunde begreift. Als Analysesetting dient die Palliativmedizin, da sie als Beispiel für eine besonders vulnerable Patientengruppe gelten kann. Als Basis der Argumentation werden die Ergebnisse einer qualitativen Studie herangezogen, welche die Einstellungen von Palliativpatienten zum Thema „der Patient als Kunde“ erhob sowie der Frage nachging, ob sich Palliativpatienten, speziell im Rahmen von medizinischen Entscheidungen, als selbstbestimmt begreifen. Die Studienergebnisse zeigen, dass Autonomie relational verstanden werden muss und dem Arzt eine entscheidende Rolle in der Ermöglichung von Patientenselbstbestimmung zukommt – ganz unabhängig von der Selbstattribuierung der Befragten als Kunde oder Patient. Anschließend werden diese Ergebnisse dahingehend analysiert, ob sie als Ausdruck einer Veränderung des Arzt-Patient-Verhältnisses und der ärztlichen Verantwortung gegenüber den Patienten zu werten sind. Hieraus folgernd wird nach den praktischen Implikationen für das Arzt-Patient-Verhältnis auf der Grundlage der „Ethics of Care“ gefragt sowie auf die individuelle Betreuungsnotwendigkeit, speziell von vulnerablen Patientengruppen, verwiesen. (shrink)

ZusammenfassungEin gelungenes Arzt-Patient-Verhältnis, das auf gegenseitigem Vertrauen und ärztlicher Verantwortung basiert, ist ein zentraler Bestandteil des Ideals der ärztlichen Profession. Aktuell wird vielfach von einem neuen „ökonomischen Paradigma“ in der Medizin gesprochen, das dieses Verhältnis vermeintlich unterminiert. Als ein wichtiges Merkmal dieses Paradigmas gilt das Verständnis vom Patienten als Kunden, der charakterisiert ist durch seine Selbstbestimmung bzw. Autonomie. Wie stellt sich die Kundenrolle nun aber bei vulnerablen Patientengruppen dar, die in ihrer Autonomie eingeschränkt sind, und was bedeutet dies wiederum für (...) das Arzt-Patient-Verhältnis? In dem vorliegenden Artikel wollen wir deshalb die Fragestellung verfolgen, ob sich ärztliche Verantwortung bzw. das Arzt-Patient-Verhältnis ändert, wenn sich der (vulnerable) Patient als Kunde begreift. Als Analysesetting dient die Palliativmedizin, da sie als Beispiel für eine besonders vulnerable Patientengruppe gelten kann. Als Basis der Argumentation werden die Ergebnisse einer qualitativen Studie herangezogen, welche die Einstellungen von Palliativpatienten zum Thema „der Patient als Kunde“ erhob sowie der Frage nachging, ob sich Palliativpatienten, speziell im Rahmen von medizinischen Entscheidungen, als selbstbestimmt begreifen. Die Studienergebnisse zeigen, dass Autonomie relational verstanden werden muss und dem Arzt eine entscheidende Rolle in der Ermöglichung von Patientenselbstbestimmung zukommt – ganz unabhängig von der Selbstattribuierung der Befragten als Kunde oder Patient. Anschließend werden diese Ergebnisse dahingehend analysiert, ob sie als Ausdruck einer Veränderung des Arzt-Patient-Verhältnisses und der ärztlichen Verantwortung gegenüber den Patienten zu werten sind. Hieraus folgernd wird nach den praktischen Implikationen für das Arzt-Patient-Verhältnis auf der Grundlage der „Ethics of Care“ gefragt sowie auf die individuelle Betreuungsnotwendigkeit, speziell von vulnerablen Patientengruppen, verwiesen. (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)

BackgroundPatient advocacy organizations (PAOs) have an increasing influence on health policy and biomedical research, therefore, questions about the specific character of their responsibility arise: Can PAOs bear moral responsibility and, if so, to whom are they responsible, for what and on which normative basis? Although the concept of responsibility in healthcare is strongly discussed, PAOs particularly have rarely been systematically analyzed as morally responsible agents. The aim of the current paper is to analyze the character of PAOs’ responsibility to provide (...) guidance to themselves and to other stakeholders in healthcare.MethodsResponsibility is presented as a concept with four reference points: (1) The subject, (2) the object, (3) the addressee and (4) the underlying normative standard. This four-point relationship is applied to PAOs and the dimensions of collectivity and prospectivity are analyzed in each reference point.ResultsUnderstood as collectives, PAOs are, in principle, capable of intentionality and able to act and, thus, fulfill one prerequisite for the attribution of moral responsibility. Given their common mission to represent those affected, PAOs can be seen as responsible for patients’ representation and advocacy, primarily towards a certain group but secondarily in a broader social context. Various legal and political statements and the bioethical principles of justice, beneficence and empowerment can be used as a normative basis for attributing responsibility to PAOs.ConclusionsThe understanding of responsibility as a four-point relation incorporating collective and forward-looking dimensions helps one to understand the PAOs’ roles and responsibilities better. The analysis, thus, provides a basis for the debate about PAOs’ contribution and cooperation in the healthcare sector. (shrink)

Anticipation of future decisions can be important for individuals at risk for diseases to maintain autonomy over time. For future treatment and care decisions, advance care planning is accepted as a useful anticipation tool. As research with persons with dementia seems imperative to develop disease-modifying interventions, and with changing regulations regarding research participation in Germany, advance research directives (ARDs) are considered a solution to include persons with dementia in research in an ethically sound manner. However, little is known about what (...) affected people deem anticipatable.This contribution provides a critical reflection of the literature on anticipation and of a qualitative study on the assessment of ARDs with persons with cognitive impairment in Germany. It combines theoretical and empirical reflections to inform the ethical-legal discourse.Anticipation involves the conceptual separation of the past, the present, and the future. Including dimensions such as preparedness, injunction, and optimization helps in establishing a framework for anticipatory decision-making. While dementia may offer a window of time to consider future decisions, individual beliefs about dementia including fears about stigma, loss of personhood, and solitude strongly impact anticipating sentiments. Concepts of anticipation can be useful for the examination of uncertainty, changing values, needs, and preferences interconnected with the dementia trajectory and can serve as a means to make an uncertain future more concrete. However, fears of losing one’s autonomy in the process of dementia also apply to possibilities of anticipation as these require cognitive assessment and reassessment of an imagined future with dementia. (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)

BackgroundRespect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately (...) operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.MethodsUsing PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.ResultsFifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.ConclusionsThree main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations. (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)

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)