The Moral and Gender Implications of Measures Used to Modulate the Mobility of People With Dementia Living in Residential Care Environments: A Scoping Review.

BACKGROUND AND OBJECTIVES: Policies and measures often restrict the mobility of people with dementia living in residential care environments to protect them from harm. However, such measures can violate human rights and affect the quality of life. This review aims to summarize the literature on what is known about measures used to modulate the life-space mobility of residents with dementia living in a residential care environment. Furthermore, moral and sex and gender considerations were explored. RESEARCH DESIGN AND METHODS: A scoping review framework was referenced to summarize the literature. A total of 5 databases were searched: PubMed, Embase, CINAHL, SCOPUS, and Web of Science. The studies for eligibility using the Rayyan screening tool. RESULTS: A total of 30 articles met the inclusion criteria. A narrative description of the findings of the articles is presented across 3 themes: (1) measures and strategies used to modulate the life-space mobility; (2) moral aspects; and (3) sex and gender considerations. DISCUSSION AND IMPLICATIONS: Various measures are used to modulate the life-space mobility of people with dementia living in residential care facilities. Research exploring the sex and gender differences of people with dementia is lacking. With a focus on human rights and quality of life, measures used to restrict or support mobility must support the diverse needs, capacity, and dignity of people with dementia. Noting the capacity and diversity of people with dementia will require society and public space to adopt strategies that promote safety and mobility to support the quality of life of people with dementia.

Old Age and Frailty in Deceased Organ Transplantation and Allocation-A Plea for Geriatric Assessment and Prehabilitation.

Due to demographic ageing and medical progress, the number and proportion of older organ donors and recipients is increasing. At the same time, the medical and ethical significance of ageing and old age for organ transplantation needs clarification. Advanced age is associated with the frailty syndrome that has a negative impact on the success of organ transplantation. However, there is emerging evidence that frailty can be modified by suitable prehabilitation measures. Against this backdrop, we argue that decision making about access to the transplant waiting list and the allocation of donor organs should integrate geriatric expertise in order to assess and manage frailty and impairments in functional capacity. Prehabilitation should be implemented as a new strategy for pre-operative conditioning of older risk patients' functional capacity. From an ethical point of view, advanced chronological age per se should not preclude the indication for organ transplantation and the allocation of donor organs.

AI-assisted ethics? considerations of AI simulation for the ethical assessment and design of assistive technologies.

Current ethical debates on the use of artificial intelligence (AI) in healthcare treat AI as a product of technology in three ways. First, by assessing risks and potential benefits of currently developed AI-enabled products with ethical checklists; second, by proposing ex ante lists of ethical values seen as relevant for the design and development of assistive technology, and third, by promoting AI technology to use moral reasoning as part of the automation process. The dominance of these three perspectives in the discourse is demonstrated by a brief summary of the literature. Subsequently, we propose a fourth approach to AI, namely, as a methodological tool to assist ethical reflection. We provide a concept of an AI-simulation informed by three separate elements: 1) stochastic human behavior models based on behavioral data for simulating realistic settings, 2) qualitative empirical data on value statements regarding internal policy, and 3) visualization components that aid in understanding the impact of changes in these variables. The potential of this approach is to inform an interdisciplinary field about anticipated ethical challenges or ethical trade-offs in concrete settings and, hence, to spark a re-evaluation of design and implementation plans. This may be particularly useful for applications that deal with extremely complex values and behavior or with limitations on the communication resources of affected persons (e.g., persons with dementia care or for care of persons with cognitive impairment). Simulation does not replace ethical reflection but does allow for detailed, context-sensitive analysis during the design process and prior to implementation. Finally, we discuss the inherently quantitative methods of analysis afforded by stochastic simulations as well as the potential for ethical discussions and how simulations with AI can improve traditional forms of thought experiments and future-oriented technology assessment.

Medical students' perspectives on racism in medicine and healthcare in Germany: Identified problems and learning needs for medical education.

Objective: Against the backdrop of considerable lack of research, this study provides the first exploration of medical students' perspectives on racism in medicine and healthcare in Germany. The aim is to identify problems and learning needs for medical education. We address the following research questions: - How do medical students perceive racism in medicine and healthcare in Germany? - How do they address, understand, and discuss different aspects of racism in this context? - What are their expectations regarding the role of medical education? Methods: Semi-structured online focus group discussions were conducted with 32 medical students from 13 different medical schools in Germany. The discussions were transcribed and analyzed using qualitative content analysis. Results: Based on the analysis of the focus groups, four main hypotheses could be formulated: 1. Medical students perceive racism in medicine and healthcare in Germany as a ubiquitous phenomenon. 2. They have problems to identify racist behaviour and structures due to conceptual knowledge gaps. 3. They are insecure how to deal with racism on a situational level. 4. They hold medical education accountable to tackle racism in medicine and healthcare on various levels. Conclusion: Our study raises specific learning needs for addressing racism in medicine and healthcare in Germany. Research from the US-context might inspire innovative approaches for German medical education but needs to take national specificities into account. Further research is needed to prepare the implementation of antiracist training in German medical education.

[The Perspectives of Stakeholders on Users of Care Robotics at the Intersection of Age and Gender - Results of a Qualitative Analysis]. / Die Perspektive von Stakeholdern auf Nutzende von Pflegerobotik an der Intersektion Alter und Geschlecht ­ Ergebnisse einer qualitativen Analyse.

Having to face the challenges posed by a shortage of skilled care workers and an increasing number of older people in need of care, policy makers and economic enterprises perceive care robotics as a promising solution. However, studies have shown that potential users have little interest in technology and that technology developers have little knowledge about the needs and wishes of potential users. Against this background, this paper explores, based on 16 qualitative interviews with stakeholders from the area of technology development, marketing, and nursing care (science), which assumptions and expectations regarding age and gender of users are relevant in this field. The results revealed three perspectives of the stakeholders regarding the users of care robotics: 1) the need to take age and gender in development and implementation of care robotics was acknowledged, 2) the relevance of other social categories, such as education, culture and illness, was mentioned, and 3) the relevance of social categories was rejected altogether. These results are discussed in the context of discourses about diversity in care-robotics and conclusions are drawn for user-centred and diversity-sensitive technology development and implementation.

[Between trivialization and pathologization: Healthcare in old age and the temporal structure of a good life]. / Zwischen Bagatellisierung und Pathologisierung: Gesundheitsversorgung im Alter und die Zeitstruktur guten Lebens.

Definition of problem: Modern medicine is challenging traditional views of age(ing). What was long considered a "normal" sign of old age is now often perceived and treated as a disease. As a result, age-related health standards and treatment goals are shifting. The resulting scope between trivialization and pathologization of age(ing) requires ethical reflection. Argument: This article explores the question of how notions of age(ing) are to be understood ethically in the context of medicine. We first provide an overview of the state of research on the role of age stereotypes in the healthcare of older people. The notions of age(ing) identified in this context are then analyzed from the perspective of teleological ethics. Conclusions: What kinds of healthcare are reasonable and appropriate in old age has to be discussed in the context of the temporal structure of a good life.

Editorial introduction: Biomedicine and life sciences as a challenge to human temporality.

Bringing together scholars from philosophy, bioethics, law, sociology, and anthropology, this topical collection explores how innovations in the field of biomedicine and the life sciences are challenging and transforming traditional understandings of human temporality and of the temporal duration, extension and structure of human life. The contributions aim to expand the theoretical debate by highlighting the significance of time and human temporality in different discourses and practical contexts, and developing concrete, empirically informed, and culturally sensitive perspectives. The collection is structured around three main foci: the beginning of life, the middle of life, and later life. This structure facilitates an in-depth examination of specific technological and biographical contexts and at the same time allows an overarching comparison of relevant similarities and differences between life phases and fields of application.

Recognizing the Diverse Faces of Later Life: Old Age as a Category of Intersectional Analysis in Medical Ethics.

Public and academic medical ethics debates surrounding justice and age discrimination often proceed from a problematic understanding of old age that ignores the diversity of older people. This article introduces the feminist perspective of intersectionality to medical ethical debates on aging and old age in order to analyze the structural discrimination of older people in medicine and health care. While current intersectional approaches in this field focus on race, gender, and sexuality, we thus set out to introduce aging and old age as an additional category that is becoming more relevant in the context of longer life expectancies and increasing population aging. We analyze three exemplary cases on the individual, institutional, and public health level, and argue that considering the intersections of old age with other social categories helps to accommodate the diverse identities of older people and detect inequality and structural discrimination.

Death in Advance? A critique of the "Zombification" of people with dementia.

This contribution sets out to criticize the prominent metaphor of "death while alive" in the context of dementia. We first explain the historical origin and development as well as the philosophical premises of the image. We then take a closer look at its implications for understanding dementia and societal attitudes and behaviours towards those affected. In doing so, we adopt a life course perspective that seeks to account for the ethical significance of the temporal extension and structure of human life. According to this perspective, individual existence in time is characterized by normative standards of age-appropriate behavior, evaluative standards of a good life, and teleological notions of successful development which require theoretical analysis and ethical discussion. Such a perspective can contribute significantly to spelling out the implications of the metaphor of death while alive and to criticizing their problematic aspects. Indeed, it makes clear that this metaphor aligns dementia with a different point in the human life course, thus ultimately framing it as a kind of deviation from the biographical norm, a disruption in an assumed temporal order of existence. At the same time, the life course perspective can help to understand why this conception involves ethically problematic distortions and blind spots. The resulting considerations allow conclusions with regard to medical and care ethical debates about self-determination, surrogate decision making, and advance directives in the context of dementia. Furthermore, on a theoretical-conceptual level, they also illustrate the importance of a biography- and culture-sensitive approach to philosophical and ethical reasoning in biomedicine and the life sciences.

Gender and Age Stereotypes in Robotics for Eldercare: Ethical Implications of Stakeholder Perspectives from Technology Development, Industry, and Nursing.

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.

[Moral issues of live-in care by Eastern European care workers for people with dementia: an ethical analysis of relatives' expectations in online forums]. / Moralische Probleme der Versorgung von Menschen mit Demenz durch osteuropäische Live-in-Hilfen: eine ethische Analyse der Erwartungen von Angehörigen in Onlineforen.

Problem: An estimated 100,000-500,000 migrant care workers provide live-in care in German households, many of them caring for older people with dementia. Social research has identified a wide range of structural social problems associated with live-in care. However, a systematic ethical analysis and discussion is still missing. Arguments: This article explores the moral conflicts that arise in the microsetting of live-in arrangements for people with dementia. For this purpose, we conduct an ethical analysis of the expectations of relatives towards live-in care for people with dementia based on a qualitative content analysis of 182 contributions from three German-language online forums. These expectations address live-ins as service providers, professional nurses, moral agents, and family members. Conclusion: The diverse and often disappointed expectations of relatives are an expression of problematic and partly contradictory claims regarding live-in care for people with dementia. An ethical analysis of their legitimacy and coherence can help to improve the individual arrangement, the institutional organisation, and the moral framing and legal regulation of live-in care.

[Family Medicine in the Digital Age: Scenarios and Recommendations]. / Hausärztliche Medizin im digitalen Zeitalter: Szenarien und Empfehlungen.

AIMS: The aim of this study was to examine the situation of family medicine in the digital age in order to discuss future trends and outline recommendations for action. METHODS: We conducted a structured deliberative process employing elements of the scenario method and involving relevant stakeholder perspectives. Based on an empirically informed analysis of current situations and trends, the scenario method allows the formation of practical recommendations. RESULTS: Extrapolating current trends in the medical profession, the patients, the technological development, and the healthcare system, we developed a best case and a worst case scenario of family medicine in the year 2050. From the analysis and discussion of the scenarios, we derived recommendations for practitioners and decision makers. CONCLUSIONS: Based on the developed scenarios, we recommend twelve measures towards a model of future healthcare that is centered on family medicine and enables a comprehensive, digitally supported holistic and patient-oriented service provision.

Aging 4.0? Rethinking the ethical framing of technology-assisted eldercare.

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.

Young for old-old for young? Ethical perspectives on intergenerational solidarity and responsibility in public discourses on COVID-19.

In the wake of the Coronavirus pandemic, intergenerational solidarity and responsibility have become central points of reference in public discourses. However, the use of these concepts is often unclear and ambivalent: On one hand, older people are described as a vulnerable group whose protection requires sacrifices on the part of younger generations, e.g., regarding individual freedom and economic welfare. On the other, they appear as dispensable individuals that should relinquish their claims for the sake of the young and their future prospects. Our contribution offers an analysis of intergenerational solidarity and responsibility in public discourses on COVID-19. The leading question is how both concepts are used and how the corresponding claims can be justified or criticized. We first give an overview of notions of intergenerational solidarity and responsibility in current debates. In the next step, we provide a moral philosophical clarification of both concepts and their normative presuppositions. We then conduct a descriptive ethical discourse analysis of pertinent cases from three areas of European discourse: politics, civil society, and mass media. The analysis focuses on politico-moral claims and their normative premises, ambiguities, and biases. We argue that the discourse involves assumptions about old age and generational relations that need further clarification and justification. An analysis of intergenerational solidarity and responsibility in times of COVID-19 can help understand the dynamics of social cohesion in late-modern societies.

[Ethical Aspects of Co-Intelligent Assisitive Technologies in Dementia Care]. / Ethische Aspekte co-intelligenter Assistenztechnologien in der Versorgung von Menschen mit Demenz.

Smart assistive technologies are increasingly discussed as a solution for the care of people with dementia. The article considers central ethical challenges of the use of such systems. It focuses on issues of privacy and empowerment.

Use of Cerebrospinal Fluid Biomarkers of Alzheimer's Disease Risk in Mild Cognitive Impairment and Subjective Cognitive Decline in Routine Clinical Care in Germany.

BACKGROUND: The National Institute of Aging and Alzheimer's Association's diagnostic recommendations for preclinical Alzheimer's disease (AD) and mild cognitive impairment (MCI) define AD by pathological processes which can be detected by biomarkers. These criteria were established as part of a research framework intended for research purposes but progressively enter the clinical practice. OBJECTIVE: We investigated the availability, frequency of use, interpretation, and therapeutic implications of biomarkers for the etiologic diagnosis and prognosis in MCI and subjective cognitive decline (SCD) in routine clinical care. METHODS: We conducted a cross-sectional questionnaire survey among 215 expert dementia centers (hospitals and memory clinics) in Germany. RESULTS: From the 98 centers (45.6% of contacted centers) included, two-thirds reported use of the cerebrospinal fluid (CSF) biomarkers Aß42, tau, and phospho-tau in the diagnostic workup of MCI and one third in SCD. CSF biomarker analysis was more often employed by neurological (MCI 84%; SCD 42%) compared to psychiatric institutions (MCI 61%; SCD 33%; p≤0.001). Although dementia experts disagreed on the risk of progression associated with different CSF biomarker constellations, CSF biomarker results guided therapeutic decisions: ∼40% of responders reported to initiate cholinesterase inhibitor therapy in MCI and 18% in SCD (p = 0.006), given that all CSF biomarkers were in the pathological range. CONCLUSION: Considering the vast heterogeneity among dementia expert centers in use of CSF biomarker analysis, interpretation of results, and therapeutic consequences, a standardization of biomarker-based diagnosis practice in pre-dementia stages is needed.

Clinical application of genomic high-throughput data: Infrastructural, ethical, legal and psychosocial aspects.

Genomic high-throughput technologies (GHTT) such as next-generation sequencing represent a fast and cost-effective tool toward a more comprehensive understanding of the molecular background of complex diseases. However, technological advances contrast with insufficient application in clinical practice. Thus, patients, physicians, and other professionals are faced with tough challenges that forestall the efficient and effective implementation. With the increasing application of genetic testing, it is of paramount importance that physicians and other professionals in healthcare recognize the restrictions and potential of GHTT, in order to understand and interpret the complex data in the context of health and disease. At the same time, the growing volume and complexity of data is forever increasing the need for sustainable infrastructure and state-of-the-art tools for efficient data management, including their analysis and integration. The large pool of sensitive information remains difficult to interpret and fundamental questions spanning from billing to legal, social, and ethical issues have still not been resolved. Here we summarize and discuss these obstacles in an interdisciplinary context and suggest ways to overcome them. Continuous discussion with clinicians, data managers, biostatisticians, systems medicine experts, ethicists, legal scholars, and patients illuminates the strengths, weakness, and current practices in the pipeline from biomaterial to sequencing and data management. This discussion also highlights the new, cross-disciplinary working collaborations to realize the wide-ranging challenges in clinical genomics including the exceptional demands placed on the staff preparing and presenting the data, as well as the question as to how to report the data and results to patients.

Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research.

BACKGROUND: Data-intensive research in medicine and healthcare such as health-related big data research (HBDR) implies that data from clinical routine, research and patient-reported data, but also non-medical social or demographic data, are aggregated and linked in order to optimize biomedical research. In this context, notions of patient participation and involvement are frequently invoked to legitimize this kind of research and improve its governance. The aim of this debate paper is to critically examine the specific use and ethical role of participatory concepts in the context of HBDR and data-intensive research in medicine and healthcare. DISCUSSION: We introduce basic conceptual distinctions for the understanding of participation by looking at relevant fields of application in politics, bioethics and medical research. Against this backdrop, we identify three paradigmatic participatory roles that patients/subjects are assigned within the field of HBDR: participants as providers of biomaterials and data, participants as administrators of their own research participation and participants as (co-)principal investigators. We further illustrate these roles by exemplary data-intensive research-initiatives. Our analysis of these initiatives and their respective participatory promises reveals specific ethical and practical shortcomings and challenges. Central problems affecting, amongst others, ethical and methodological research standards, as well as public trust in research, result from the negligence of essential political-ethical dimensions of genuine participation. CONCLUSIONS: Based on the conceptual distinctions introduced, we formulate basic criteria for justified appeals to participatory approaches in HBDR and data-intensive research in medicine and healthcare in order to overcome these shortcomings. As we suggest, this is not only a matter of conceptual clarity, but a crucial requirement for maintaining ethical standards and trust in HBDR and related medical research.