Cross-cultural perspectives on intelligent assistive technology in dementia care: comparing Israeli and German experts' attitudes.

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.

Identifying Stigmatizing Language Used by Israelis and Germans With a Mild Neurocognitive Disorder, Their Relatives, and Caregivers of People With Alzheimer's Disease.

OBJECTIVES: The purpose of the study was to examine and compare the dementia-related discourse and language used by people with mild neurocognitive disorder (MND), their family members, and family caregivers of people with Alzheimer's disease in Israel and Germany. DESIGN: This secondary qualitative analysis included focus groups and semistructured interviews. Thematic analysis was used to reveal the main discourses and stigmatic language used regarding dementia and people with dementia. SETTING: Israeli and German stakeholders. PARTICIPANTS: Forty-four Israeli and 44 German participants: 28 people with MND, 20 family members of people with MND, and 40 family caregivers of people with Alzheimer's disease. RESULTS: Two main discourses were identified: the tragedy and the biomedical discourse. The tragedy discourse included several subthemes: "Dementia as the worst-case scenario," "Nothing can be done about dementia," and "People with dementia are not human." The biomedical discourse stressed pathologic aspects of the condition. Similarities and differences were found between Israeli and German participants. CONCLUSIONS: The study indicates that, despite culture and language differences, the use of stigmatic discourse and stigmatizing language is common among people with close exposure to dementia in Israel and Germany. Efforts should be increased to develop a person-centered and dementia-friendly language.

Scarce resources, public health and professional care: the COVID-19 pandemic exacerbating bioethical conflicts - findings from global qualitative expert interviews.

BACKGROUND: Since spring 2020, the SARS-CoV-2 virus has spread worldwide, causing dramatic global consequences in terms of medical, care, economic, cultural and bioethical dimensions. Although the resulting conflicts initially appeared to be quite similar in most countries, a closer look reveals a country-specific intensification and differentiation of issues. Our study focused on understanding and highlighting bioethical conflicts that were triggered, exposed or intensified by the COVID-19 pandemic in low and middle-income countries (LMICs) and high-income countries (HICs). METHODS: We conducted qualitative interviews with 39 ethics experts from 34 countries (Argentina, Australia, Austria, Brazil, Canada, Colombia, Denmark, Ecuador, Ethiopia, France, Germany, India, Italy, Israel, Japan, Kyrgyzstan, Mexico, Nigeria, Oman, Pakistan, Paraguay, Poland, Romania, Russia, Singapore, South Korea, Spain, Sweden, South Africa, Tunisia, Türkiye, United-Kingdom, United States of America, Zambia) from November 2020 to March 2021. We analysed the interviews using qualitative content analysis. RESULTS: The scale of the bioethical challenges between countries differed, as did coping strategies for meeting these challenges. Data analysis focused on: a) Resource scarcity in clinical contexts: Scarcity of medical resources led to the need to prioritize the care of some COVID-19 patients in clinical settings globally. Because this entails the postponement of treatment for other patients, the possibility of serious present or future harm to deprioritized patients was identified as a relevant issue. b) Health literacy: The pandemic demonstrated the significance of health literacy and its influence on the effective implementation of health measures. c) Inequality and vulnerable groups: The pandemic highlighted the context-sensitivity and intersectionality of the vulnerabilities of women and children in LMICs and the aged in HICs. d) Conflicts surrounding healthcare professionals: The COVID-19 outbreak underscored the tough working conditions for nurses and other health professionals, raising awareness of the need for reform. CONCLUSION: The pandemic exposed pre-existing structural problems in LMICs and HICs. Without neglecting individual contextual factors in the observed countries, we created a mosaic of different voices of experts in bioethics across the globe, drawing attention to the need for international solidarity in the context of a global crisis.

Ethical, legal and social aspects of human cerebral organoids and their governance in Germany, the United Kingdom and the United States.

Human cerebral organoids (HCOs) are model systems that enable researchers to investigate the human brain in ways that had previously been impossible. The emergence of HCOs was accompanied by both expert and layperson discussions concerning the possibility of these novel entities developing sentience or consciousness. Such concerns are reflected in deliberations about how to handle and regulate their use. This perspective article resulted from an international and interdisciplinary research retreat "Ethical, Legal and Social Aspects of Human Cerebral Organoids and their Governance in Germany, the United Kingdom and the United States", which took place in Tübingen, Germany, in August 2022. The retreat focused on whether HCO research requires new ethical and regulatory approaches. It addressed epistemic issues around the detection and theorisation of consciousness, ethical concerns around moral status and research conduct, difficulties for legislation and guidelines managing these entities, and public engagement.

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.

Attitudes of European students towards family decision-making and the harmonisation of consent systems in deceased organ donation: a cross-national survey.

BACKGROUND: European countries are increasingly harmonising their organ donation and transplantation policies. Although a growing number of nations are moving to presumed consent to deceased organ donation, no attempts have been made to harmonise policies on individual consent and the role of the family in the decision-making process. Little is known about public awareness of and attitudes towards the role of the family in their own country and European harmonisation on these health policy dimensions. To improve understanding of these issues, we examined what university students think about the role of the family in decision-making in deceased organ donation and about harmonising consent policies within Europe. METHODS: Using LimeSurvey© software, we conducted a comparative cross-sectional international survey of 2193 university students of health sciences and humanities/social sciences from Austria (339), Belgium (439), Denmark (230), Germany (424), Greece (159), Romania (190), Slovenia (190), and Spain (222). RESULTS: Participants from opt-in countries may have a better awareness of the family's legal role than those from opt-out countries. Most respondents opposed the family veto, but they were more ambivalent towards the role of the family as a surrogate decision-maker. The majority of participants were satisfied with the family's legal role. However, those who were unsatisfied preferred to limit family involvement. Overall, participants were opposed to the idea of national sovereignty over consent policies. They favoured an opt-out policy harmonisation and were divided over opt-in. Their views on harmonisation of family involvement were consistent with their personal preferences. CONCLUSIONS: There is overall division on whether families should have a surrogate role, and substantial opposition to granting them sole authority over decision-making. If European countries were to harmonise their policies on consent for organ donation, an opt-out system that grants families a surrogate decision-making role may enjoy the widest public support.

The emergence of temporality in attitudes towards cryo-fertility: a case study comparing German and Israeli social egg freezing users.

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' (SEF) 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 (German users); singlehood and "waiting" for a partner (Israeli and German users); and the planning of and hope for multiple children (Israeli users). 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 (re)constructing medical technological innovations and related temporalities.

Attitudes Toward Mobile Apps for Pandemic Research Among Smartphone Users in Germany: National Survey.

BACKGROUND: During the COVID-19 pandemic, but also in the context of previous epidemic diseases, mobile apps for smartphones were developed with different goals and functions, such as digital contact tracing, test management, symptom monitoring, quarantine compliance, and epidemiological and public health research. OBJECTIVE: The aim of this study was to explore the potential for the acceptance of research-orientated apps (ROAs) in the German population. To this end, we identified distinctive attitudes toward pandemic apps and data sharing for research purposes among smartphone users in general and with a focus on differences in attitudes between app users and nonusers in particular. METHODS: We conducted a cross-sectional, national, telephone-based survey of 1003 adults in Germany, of which 924 were useable for statistical analysis. The 17-item survey assessed current usage of pandemic apps, motivations for using or not using pandemic apps, trust in app distributors and attitudes toward data handling (data storage and transmission), willingness to share coded data with researchers using a pandemic app, social attitudes toward app use, and demographic and personal characteristics. RESULTS: A vast majority stated that they used a smartphone (778/924, 84.2%), but less than half of the smartphone users stated that they used a pandemic app (326/778, 41.9%). The study focused on the subsample of smartphone users. Interestingly, when asked about preferred organizations for data storage and app distribution, trust in governmental (federal or state government, regional health office), public-appointed (statutory health insurance), or government-funded organizations (research institutes) was much higher than in private organizations (private research institutions, clinics, health insurances, information technology [IT] companies). Having a university degree significantly (P<.001) increased the likelihood of using a pandemic app, while having a migration background significantly (P<.001) decreased it. The overwhelming majority (653/778, 83.9%) of smartphone users were willing to provide their app data for state-funded research. Regarding attitudes toward app usage, striking differences between users and nonusers were found. Almost all app users (317/327, 96.9%) stated they would be willing to share data, whereas only 74.3% (336/452) of nonusers supported data sharing via an app. Two-thirds (216/326, 66.3%) of app users fully or rather agreed with the statement that using a pandemic app is a social duty, whereas almost the same proportion of nonusers entirely or rather disagreed with that statement (273/451, 60.5%). CONCLUSIONS: These findings indicate a high potential for the adoption of ROAs among smartphone users in Germany as long as organizational providers engaged in development, operation, and distribution are state-funded or governmental institutions and transparency about data-using research institutions is provided.

Should the family have a role in deceased organ donation decision-making? A systematic review of public knowledge and attitudes towards organ procurement policies in Europe.

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 requiere 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.

Moral motivation regarding dementia risk testing among affected persons in Germany and Israel.

Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer's disease at a presymptomatic (preclinical) 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 (N=88; 44 participants in each country). 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.

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.

Governance quality indicators for organ procurement policies.

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.

The Experts' Advice: Prevention and Responsibility in German Media and Scientific Discourses on Dementia.

In the absence of effective pharmacological therapy options, the focus of dementia and Alzheimer's research has shifted from treatment and care to risk prediction, early detection, and prevention. Public health communication and media coverage regarding dementia emphasize the individual responsibility for dementia risk management. Focusing on the social and moral implications of the new understanding and public representation of dementia, we present an analysis of medical science, nursing science, and media discourses in Germany between 2014 and 2019. We show which notions of dementia and prevention characterize the medical and nursing science debates regarding dementia and how scientific knowledge is transferred into media discourses on dementia. We further discuss how dementia risk communication interacts with contemporary social and health policies and in what ways current dementia discourses are associated with a (self-)responsibilization of cognitive aging.

[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.

My Data, My Choice? - German Patient Organizations' Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study.

Personalized medicine (PM) operates with biological data to optimize therapy or prevention and to achieve cost reduction. Associated data may consist of large variations of informational subtypes e.g. genetic characteristics and their epigenetic modifications, biomarkers or even individual lifestyle factors. Present innovations in the field of information technology have already enabled the procession of increasingly large amounts of such data ('volume') from various sources ('variety') and varying quality in terms of data accuracy ('veracity') to facilitate the generation and analyzation of messy data sets within a short and highly efficient time period ('velocity') to provide insights into previously unknown connections and correlations between different items ('value'). As such developments are characteristics of Big Data approaches, Big Data itself has become an important catchphrase that is closely linked to the emerging foundations and approaches of PM. However, as ethical concerns have been pointed out by experts in the debate already, moral concerns by stakeholders such as patient organizations (POs) need to be reflected in this context as well. We used an empirical-ethical approach including a website-analysis and 27 telephone-interviews for gaining in-depth insight into German POs' perspectives on PM and Big Data. Our results show that not all POs are stakeholders in the same way. Comparing the perspectives and political engagement of the minority of POs that is currently actively involved in research around PM and Big Data-driven research led to four stakeholder sub-classifications: 'mediators' support research projects through facilitating researcher's access to the patient community while simultaneously selecting projects they preferably support while 'cooperators' tend to contribute more directly to research projects by providing and implemeting patient perspectives. 'Financers' provide financial resources. 'Independents' keep control over their collected samples and associated patient-related information with a strong interest in making autonomous decisions about its scientific use. A more detailed terminology for the involvement of POs as stakeholders facilitates the adressing of their aims and goals. Based on our results, the 'independents' subgroup is a promising candidate for future collaborations in scientific research. Additionally, we identified gaps in PO's knowledge about PM and Big Data. Based on these findings, approaches can be developed to increase data and statistical literacy. This way, the full potential of stakeholder involvement of POs can be made accessible in discourses around PM and Big Data.

Bioethics and the argumentative legacy of atrocities in medical history: Reflections on a complex relationship.

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.

Critical analysis of communication strategies in public health promotion: An empirical-ethical study on organ donation in Germany.

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.

Attitudes towards prediction and early diagnosis of late-onset dementia: a comparison of tested persons and family caregivers.

Background: The focus on early detection of dementia and Mild Cognitive Impairment (MCI) diagnosis has entered the clinics' daily routine. However, there exist epistemic uncertainty and moral concerns whether early detection and prediction of dementia is clinically meaningful for the people affected, primarily due to the lack of effective treatment options.Methods: In this study, we adopted qualitative research methods. Twelve face-to-face interviews with tested persons with MCI and early dementia and five focus groups with family caregivers were conducted in Germany in order to explore and analyze their understanding and assessments of early detection and prediction of dementia in memory clinics.Results: Our study revealed that there was much uncertainty among the participants diagnosed with MCI especially when compared to the participants with an early dementia diagnosis. Their uncertainty concerned the meaning of a 'MCI' diagnosis as well as the validity of specific biomarker test results. Moreover, we identified different lines of moral issues for and against the tests among the participants. They include a) inter-familiar conflicts of interest in the initial phase of memory problems, b) the hope for (future) therapy and prevention, c) the desire for easier access to experts in memory clinics, d) advance planning, e) stigmatization, as well as, f) suicide as an option to avoid the future loss of self-determination.Conclusions: Current clinical and communication strategies only partly address the perspectives and needs of the affected. A standardized and ethically reflected procedure of the information provided by professionals before testing and afterwards, during disclosure, seems necessary. Further, longitudinal studies are needed to improve our knowledge about the experiences tested persons and family caregivers have with different levels of stigma.