Ambient assisted living technologies can provide assistance and support to persons with dementia. They might allow them the possibility of living at home for longer whilst maintaining their comfort and security as well as offering a way towards reducing the huge economic and personal costs forecast as the incidence of dementia increases worldwide over coming decades. However, the development, introduction and use of AAL technologies also trigger serious ethical issues. This paper is a systematic literature review (...) of the on-going scholarly debate about these issues. More specifically, we look at the ethical issues involved in research and development, clinical experimentation, and clinical application of AAL technologies for people with dementia and related stakeholders. In the discussion we focus on: the value of the goals of AAL technologies, the special vulnerability of persons with dementia in their private homes, the complex question of informed consent for the usage of AAL technologies. (shrink)

Ambient assisted living technologies are expected to solve a significant number of problems related to elderly care. However, in Japan, limited discourse on the ethical issues concerning their application is hindering the spread of AAL technologies. Against this background, this study explores the ethical perspectives of AAL technology engineers in Japanese companies and the circumstances influencing their perspectives. A qualitative study using semi-structured interviews was conducted. Nineteen Japanese AAL-technology companies were contacted, and nine of them and their (...) engineers responded to the interviews. The contents of the interviews were analyzed with thematic analysis which showed that the engineers had ethical concerns about their products as follows: safety and related conflicts, acceptance of the technology, dependence on the technology, accident liability, fair access to the technologies, and privacy. In relation to these issues, they identified as company employees with regard to the following: responding to social needs, having many users, and cost reduction. They also mentioned being influenced by the Japanese national program for AAL-technology promotion. The engineers experienced dilemmas between the various stakeholders’ interests and they hoped that ethical guidelines for developing AAL technologies would resolve such dilemmas. In conclusion, Japanese AAL-technology engineers tackle ethical issues with regard to the application of their products. The engineers hope for the establishment of guidelines for the ethically responsible development of AAL technologies. The guidelines need to be established and implemented in an interactive manner, in order to avoid their being reduced to a bureaucratic formality. (shrink)

Ambient Assisted Living (AAL) refers to technologies that track daily activities of persons in need of care to enhance their autonomy and minimise their need for assistance. New technological developments show an increasing effort to integrate automated emotion recognition and regulation (ERR) into AAL systems. These technologies aim to recognise emotions via different sensors and, eventually, to regulate emotions defined as “negative” via different forms of intervention. Although these technologies are already implemented in other areas, AAL stands (...) out by its tendency to enable an inconspicuous 24-hour surveillance in the private living space of users who rely on the technology to maintain a certain degree of independence in their daily activities. The combination of both technologies represents a new dimension of emotion recognition in a potentially vulnerable group of users. Our paper aims to provide an ethical contextualisation of the novel combination of both technologies. We discuss different concepts of emotions, namely Basic Emotion Theory (BET) and the Circumplex Model of Affect (CMA), that form the basis of ERR and provide an overview over the current technological developments in AAL. We highlight four ethical issues that specifically arise in the context of ERR in AAL systems, namely concerns regarding (1) the reductionist view of emotions, (2) solutionism as an underlying assumption of these technologies, (3) the privacy and autonomy of users and their emotions, (4) the tendency of machine learning techniques to normalise and generalise human behaviour and emotional reactions. (shrink)

The original article published in volume 10 issue 2 on pp. 143–155 had an error. Table 1 headers “Mobility assistance” and “Automated toilet” were inadvertently removed, while the headers “Movement actuation” and “Conversation partner” were in the wrong columns.

The supervisor of the activities of a system user should benefit from the knowledge contained in the event logs of the user. They allow the monitoring of the sequential and parallel user activities. To make event logs more accessible to the supervisor, we suggest a process mining approach, including first the design of an understanding model of the activities of a system user. The model design is based on the relationships between the event logs and the activities of a system (...) user. An intervention model completes the understanding model to assist the supervisor. The intervention model enables an action of the supervisor on the critical activities, and the detection of anomalies. The models are automatically designed with a model-driven engineering approach. An experiment on a smart home system illustrates this tooled design, where the supervisor is a medical or paramedical staff member. (shrink)

Big Data and biopolitics are two major issues currently attracting attention in public health discourse, but also in sociology of knowledge, STS Studies as well as in philosophy of science and bioethics. The paper considers big data to be a new form and instrument of biopolitics which addresses both the categories of body and space. It is expected to fundamentally transform health care systems, domestic environments and practices of self-observation and reflection. Accordingly the paper points out some problems and pitfalls (...) as well as open questions that have emerged in the field of AAL, which merit more attention in future public and academic debate. (shrink)

In 2014, the worldwide context is that the population is increasingly both expanding and aging in industrial countries. In contrast, the personal health levels of individuals could decrease. Although retirement homes and health-care centers assume most of the demand, they will most probably overflow in the next few years. One of the current solutions is e-Health, which involves biomedical monitoring but also home automation functions to compensate for disabilities that tend to increase with age. In this context, several domains have (...) to be merged while respecting the entire ecosystem: the users, their needs and environment, but also all the various actors/experts involved in this process. The issue, however, is that enormous effort is required to combine the multiple expert domains because these can be antinomic. Hence, this paper proposes a collaborative workflow that brings together these different actors and generates the control/command application. Applying model-driven engineering, this workflow makes a clear distinction between people’s health requirements, the home automation functions, and the user interface points of view. Thus, it allows experts in each field to adapt their system in terms of the user’s needs, disability, and health state. (shrink)

Due to the socio-demographic change in most developed western countries, elderly populations have been continuously increasing. Therefore, preventive and assistive systems that allow elderly people to independently live in their own homes as long as possible will become an economical if not ethical necessity. These respective technologies are being developed under the term "Ambient Assistive Technologies". The EU-funded AAT-project Ambient Lighting Assistance for an Ageing Population has established the long-term goal to create an adaptive system capable of improving (...) the residential lighting conditions of single living elderly persons also aiming at supporting the preservation of their independence. Results of an earlier survey revealed that the elderly perceived their current lighting situation as satisfactory, whereas interviewers assessed in-house lighting as too dark and risk-laden. The overall results of ALADIN showed a significant increase in well-being from the baseline final testing with the new adaptive lighting system. Positive results for wellbeing and life quality suggest that the outcome effects may be attributed to the introduction of technology as well as to social contacts arising from participating in the study. The technological guidance of the study supervisors, in particular, may have produced a strong social reactivity effect that was first observed in the famous Hawthorne experiments in the 1930s. As older adults seem to benefit both from meaningful social contacts as well as assistive technologies, the question arises how assistive technology can be socially embedded to be able to maximize positive health effects. Therefore ethical guidelines for development and use of new assistive technologies for handicapped/older persons have to be developed and should be discussed with regard to their applicability in the context of AAT. (shrink)

Ambient assisted living systems are based on sensors and actuators, with a diversity of network protocols and vendors. This commonly leads to the introduction of gateways or middlewares into the technical infrastructure in order to address interoperability issues. The xAAL framework presented in this paper aims to provide interoperability and to redesign such “gateways” into well-defined functional entities communicating with each other via a lightweight message bus over IP. Each entity may have multiple instances, may be shared (...) between several boxes, and may be physically located in any box. Thanks to the distributed architecture of the system, each home automation vendor may peacefully provide its own xAAL box without revealing details of its technology. Also, several applications may be plugged together on the xAAL bus without getting bored with underlying heterogeneity. Moreover, the management of the dynamicity allows sensors or applications to enter and leave the system at any time. (shrink)

Ambient assisted living technologies are increasingly presented and sold as essential smart additions to daily life and home environments that will radically transform the healthcare and wellness markets of the future. An ethical approach and a thorough understanding of all ethics in surveillance/monitoring architectures are therefore pressing. AAL poses many ethical challenges raising questions that will affect immediate acceptance and long-term usage. Furthermore, ethical issues emerge from social inequalities and their potential exacerbation by AAL, accentuating the existing (...) access gap between high-income countries and low and middle-income countries. Legal aspects mainly refer to the adherence to existing legal frameworks and cover issues related to product safety, data protection, cybersecurity, intellectual property, and access to data by public, private, and government bodies. Successful privacy-friendly AAL applications are needed, as the pressure to bring Internet of Things devices and ones equipped with artificial intelligence quickly to market cannot overlook the fact that the environments in which AAL will operate are mostly private. The social issues focus on the impact of AAL technologies before and after their adoption. Future AAL technologies need to consider all aspects of equality such as gender, race, age and social disadvantages and avoid increasing loneliness and isolation among, e.g. older and frail people. Finally, the current power asymmetries between the target and general populations should not be underestimated nor should the discrepant needs and motivations of the target group and those developing and deploying AAL systems. Whilst AAL technologies provide promising solutions for the health and social care challenges, they are not exempt from ethical, legal and social issues. A set of ELSI guidelines is needed to integrate these factors at the research and development stage. (shrink)

Aurama is a system designed to provide peace of mind and a sense of connectedness to adults who care for elderly parents living alone. Aurama monitors the elders at home using unobtrusive sensor technology and collects data about sleeping patterns, weight trends, cognitive abilities and presence at home. The system provides an unobtrusive ambient information display that presents the status of the elder and lets its users inspect long-term data about the well-being of the elder interactively. Aurama was (...) designed iteratively with substantial user involvement through interviews, prototype evaluation, focus groups and lab tests. The final prototype was evaluated in two field trials each involving an elder and their adult children. The input of users throughout the design process and during these tests demonstrates clearly the potential of awareness systems to support the target user group to obtain peace of mind and feel connected. Furthermore, the users indicate a clear need for information on long-term trends relating to the well-being of aging parents, in contrast to the current emphasis in this field of research on providing instantaneous status information about daily activities and context. (shrink)

This Research Topic focuses on both strengths and weaknesses of social innovation, technological innovation, and health innovation that are increasingly recognized as crucial concepts related to the formulation of responses to the social, health, and environmental challenges. Goals of this Research Topic: (1) to identify and share the best recent practices and innovations related to social, environmental and health policies; (2) to debate on relevant governance modes, management tools as well as evaluation and impact assessment techniques; (3) to discuss dilemmas (...) in the fields of management, financing, designing, implementing, testing, and maintaining the sustainability of innovative models of delivering social, health and care services; and (4) to recognize and analyze social, technological and health innovation that has emerged or has been scaled-up to respond to crisis situations, for example, a pandemic of the COVID-19 coronavirus disease. (shrink)

The chapter aims to introduce an integrated approach to concepts of smart cities and age-friendly cities and communities. Although these ideas are widely promoted by the European Union and the World Health Organisation, they are perceived as separate. Meanwhile, these concepts are closely intermingled in theory and practise concerning the promotion of healthy and active ageing, a universal design, usability and accessibility of age-friendly environments, reducing of the digital divide and robotic divide, and reducing of older adults’ social isolation. The (...) conclusion underlines the need for participatory creation of ambient assisted living technologies and applications with older adults and the need for advocacy to promote AAL in the context of the silver economy especially in the Central and Eastern Europe. (shrink)

This article describes the UniversAAL platform, an open platform intended to facilitate the development, distribution, and deployment of technological solutions for Ambient assisted living. The platform is intended to benefit end users, authorities with responsibility for AAL, and organizations involved in the development and deployment of AAL services. It consists of an extensive set of resources aimed at these different groups. The resources are classified into three main groups: runtime support, development support, and community support. The article (...) presents the benefits that can be expected from the widespread adoption of the platform. The article also describes progress on prototype implementations of some of the software resources, and the results of initial evaluations of the platform. The work is partially based on results from earlier European Union-funded research projects in the area. (shrink)

There is an urge to introduce high technology and robotics in care settings. Assisted living is the fastest growing form of older adults’ long-term care. Resident autonomy has become the watchword for good care. This article sheds light on the potential effects of care robotics on the sense of autonomy of older people in AL. Three aspects of the residents’ sense of autonomy are of particular interest: interaction-based sense of autonomy, coping-based sense of autonomy, and potential-based sense of (...) autonomy. Ethnographical data on resident autonomy in an AL facility and existing literature on care robots are utilized in studying what kind of assurances different types of robots would provide to maintain the sense of autonomy in AL. Robots could strengthen the different types of sense of autonomy in multiple ways. Different types of robots could widen the residents’ space of daily movements, sustain their capacities, and help them maintain and even create future expectations. Robots may strengthen the sense of autonomy of older persons in AL; however, they may simultaneously pose a threat. Multi-professional discussions are needed on whether robots are welcomed in care, and if they are, how, for whom, and in what areas. (shrink)

ContextPeople with mental disorders can acquire long-term disabilities, which could impair their functioning and quality of life (QoL), requiring permanent care and social support. Systematic data on QoL and functioning, which could support a better management of these people, were not available.ObjectiveTo analyze the QoL, level of functioning and their association with sociodemographic and clinical factors of people with mental disorders who underwent deinstitutionalization using assisted living facilities.MethodsA Cross-sectional study was conducted between July 2018 and July 2019, through (...) interviews using the World Health Organization Quality of Life (WHOQOL-BREF) to determine the QoL scores, and the World Health Organization Disability Assessment Schedule (WHODAS 2.0) to determine the level of functioning. All adults (≥18 years old) with mental disorders, who underwent deinstitutionalization, users of assisted living facilities and assisted by the Psychosocial Assistance Centers III, in a city in the state of São Paulo, Brazil, were selected. For statistical analysis of the associated factors, Student’st-test was used for dichotomous variables and ANOVA for polynomial variables. Pearson correlation coefficient was used to measure the association between QoL and functioning scores.ResultsOut of 359 people who underwent deinstitutionalization with mental disorders, 147 met the eligibility criteria. The mean total score for the WHOQOL-BREF was 66.5 ± 13.4 and the mean score for WHODAS 2.0 was 10.4 ± 7.6. An association was found between people who were studying (n= 65.8; 95%CI, 63.5–68.1vs. n= 73.9; 95%CI, 67.5–80.3;p= 0.04) and better WHOQOL-BREF QoL scores or WHODAS 2.0 levels of functioning (n= 10.9; 95%CI, 9.6–12.2vs. n= 5.1; 95%CI, 2.5–7.7;p= 0.01). A weak negative correlation (r= 0.41) emerged between higher QoL scores and functioning improvement.ConclusionThis study indicates that the QoL of the sample is associated by their functioning levels, which, in turn, may reflect on their social interactions. Public policies that favor interventions increasing socialization of this population can result in better health outcomes. The QoL and functioning scores provide valuable insights to develop public policies more suited to this population profile. (shrink)

The approach to innovations known as Responsible research and innovation aims to move the innovation system towards creating products that strive to realize social values along with economic benefits. This paper discusses the systematic assessment of assistive technologies in order for them to meet the aims expressed in RRI. A central issue in the discussion is how to facilitate an integration of insights from the discourse on RRI with more established assessment approaches such as Health Technology Assessment. Based on the (...) literature on existing socio-ethical assessment tools, I investigate how these tools can be combined with HTA and how they can add perspectives from RRI that might increase the socio-ethical value of assistive technologies. Through a discussion on how to understand RRI, HTA, assessment and integration, I suggest a list of four possible approaches that have the potential to be applied as assessment approaches that integrate insights from RRI and HTA. These are then evaluated on their ability to address issues that have emerged from a literature review on RRI and assistive technologies, on empirical studies in this technology field and on their product focus. In conclusion, I argue that the Ethical Impact Assessment, the Socratic approach, the Ethical Matrix, and the HTA Core Model seem to be the most promising methodologies, but that these need adjustments to cover substantive themes from RRI. _Keywords:_ energy scenarios, justice, future generations, capabilities approach. (shrink)

The average lifetime of people in advanced countries is significantly increased in the XXI century. The number of old and dependent people is rising due many innovations in health care: new technologies, medicine, and a lot of innovative devices that allow people to monitor their health and consult with a doctor in case of problems. In the last years, a number of information systems have been developed in the health-care area to assist people in living. Modern systems increase their (...) mobility by using personal mobile devices that allows them to interact with the system at any point of time. Smart space is a technology that allows developing such systems. It is an aggregation of devices that can share their resources and cooperate with each other. Sharing personal information between different devices requires ensuring privacy support. For these purposes, a dynamic access control support for information that is shared by devices is needed. In particular, a new access control model for accessing resources is needed. The model should describe the current situation via a context. This paper proposes a model of the context-aware access control for smart systems based on smart space technology. (shrink)

Ever since the start of the twentieth century, a growing interest and importance of studying fatwas can be noted, with a focus on Arabic printed fatwas (Wokoeck 2009). The scholarly study of end-of-life ethics in these fatwas is a very recent feature, taking a first start in the 1980s (Anees 1984; Rispler-Chaim 1993). Since the past two decades, we have witnessed the emergence of a multitude of English fatwas that can easily be consulted through the Internet (‘e-fatwas’), providing Muslims worldwide (...) with a form of Islamic normative guidance on a huge variety of topics. Although English online fatwas do provide guidance for Muslims and Muslim minorities worldwide on a myriad of topics including end-of-life issues, they have hardly been studied. This study analyses Islamic views on (non-)voluntary euthanasia and assisted suicide as expressed in English Sunni fatwas published on independent—i.e. not created by established organisations—Islamic websites. We use Tyan’s definition of a fatwa to distinguish between fatwas and other types of texts offering Islamic guidance through the Internet. The study of e-fatwas is framed in the context of Bunt’s typology of Cyber Islamic Environments (Bunt 2009) and in the framework of Roy’s view on the virtual umma (Roy 2002). ‘(Non-)voluntary euthanasia and assisted suicide’ are defined using Broeckaert’s conceptual framework on treatment decisions at the end of life (Broeckaert 2008). We analysed 32 English Sunni e-fatwas. All of the e-fatwas discussed here firmly speak out against every form of active termination of life. They often bear the same structure, basing themselves solely on Quranic verses and prophetic traditions, leaving aside classical jurisprudential discussions on the subject. In this respect they share the characteristics central in Roy’s typology of the fatwa in the virtual umma. On the level of content, they are in line with the international literature on Islamic end-of-life ethics. English Sunni e-fatwas make up an influential and therefore important developing body of Islamic orthodox normative authority on end-of-life ethics that is still open for further research. (shrink)

Mark Coeckelbergh (Int J Soc Robot 1:217–221, 2009) argues that robot ethics should investigate what interaction with robots can do to humans rather than focusing on the robot’s moral status. We should ask what robots do to our sociality and whether human–robot interaction can contribute to the human good and human flourishing. This paper extends Coeckelbergh’s call and investigate what it means to live with disembodied AI-powered agents. We address the following question: Can the human–AI interaction contribute to our moral (...) development? We present an empirically informed philosophical analysis of how the AI personal assistant Siri changes its users’ way of life, based on the responses obtained from 20 semi-directive individual interviews with Siri users. We identify changes in the users’ social interaction associated with the adoption of Siri. These changes include: (1) the indirect effect of reducing opportunities of human interaction, (2) the second-order effect of diminished expectations toward each other in a community, and (3) the acquired preference to obtain hassle-free interaction with Siri over human interaction. We examine them in relation to concerns that are voiced in the current debates over the rise of AI, namely the suspicion that humans could become overly reliant on AI (Danaher 2019) and the worry that social AI could impede on moral development (Fröding and Peterson, Ethics Inf Technol 23:207–214, 2012; Li, Ethics Inf Technol 23:543–550, 2021). We analyze the ethical costs that come from these changes in light of virtue ethics and address potential objections along the way. We end by offering directions for thinking about how to live with AI personal assistant while preserving favorable conditions for moral development. (shrink)

In this chapter I consider the narrow and wider benefits of permitting assisted dying in the specific context of organ donation and transplantation. In addition to the commonly used arguments, there are two other neglected reasons for permitting assisted suicide and/or euthanasia: assisted dying enables those who do not wish to remain alive to prolong the lives of those who do, and also allows many more people to fulfill their wish to donate organs after death. In the (...) first part of this chapter I explore the possibility of allowing those who die with assistance to donate their organs and the potential benefits of doing so in countries where some form of assisted dying is legal; in the second part I consider the added force that organ donation considerations bring to the argument in favour of legalizing assisted dying in countries where such practices remain forbidden. (shrink)

Background Medical assistance in dying (MAiD) sparks debate in several countries, some of which allow or plan to allow MAiD where a mental disorder is the sole underlying medical condition (MAiD-MD). Since MAiD-MD is becoming permissible in a growing number of jurisdictions, there is a need to better understand the moral concerns related to this option. Gaining a better understanding of the moral concerns at stake is a first step towards identifying ways of addressing them so that MAiD-MD can be (...) successfully introduced and implemented, where legislations allow it. Methods Thus, this article aims (1) to better understand the moral concerns regarding MAiD-MD, and (2) to identify potential solutions to promote stakeholders’ well-being. A qualitative thematic review was undertaken, which used systematic keyword-driven search and thematic analysis of content. Seventy-four publications met the inclusion criteria. Results Various moral concerns and proposed solutions were identified and are related to how MAiD-MD is introduced in 5 contexts: (1) Societal context, (2) Healthcare system, (3) Continuum of care, (4) Discussions on the option of MAiD-MD, (5) MAiD-MD practices. We propose this classification of the identified moral concerns because it helps to better understand the various facets of discomfort experienced with MAiD-MD. In so doing, it also directs the various actions to be taken to alleviate these discomforts and promote the well-being of stakeholders. Conclusion The assessment of MAiD-MD applications, which is part of the context of MAiD-MD practices, emerges as the most widespread source of concern. Addressing the moral concerns arising in the five contexts identified could help ease concerns regarding the assessment of MAiD-MD. (shrink)

A single question -- An exclusionary movement is born -- Legal reform to eliminate defectives -- Redrawing the boundaries of protected life -- Crystallizing events and ethical principles -- A bolt from the blue: abortion is legalized -- Man's law or god's will -- Inches from life -- Should the baby live? -- Limits to tolerable suffering -- Alleviating suffering and protecting life -- God, duty, and life worth living -- Assisted dying -- Removing the protective boundaries of (...) life -- A campaign to stop the executions -- The pendulum swings, the debate continues -- Justifying torture -- Lessons learned. (shrink)

Some jurisdictions that allow assisted dying require participating patients to have a terminal illness. This includes all Australian and US states where assisted dying is allowed. 1 Philip Reed 2 argues that this requirement constitutes discrimination against the dying. As Reed 2 argues: ‘assisted death laws that limit their services to the dying discriminate against them because death is offered to them to solve their problems’. This discrimination could take two forms: (1) via harm to dying patients (...) as a group as a result of the existence of assisted dying programmes; (2) via a negative message that such programmes communicate about whether the lives of dying patients are worth living. Assisted dying programmes are not unjustly discriminatory in either sense so long as we assume that unjust discrimination requires harm to the group in question. If assisted dying singles out the terminally ill for a programme... (shrink)

Issues of life and death such as abortion, assisted suicide, capital punishment, and others are among the most contentious in many societies. Whose rights are protected? How do these rights and protections change over time and who makes those decisions? Based on the author's award-winning and hugely popular undergraduate course at The University of Texas, this book explores these questions and the fundamentally sociological processes that underlie the quest for morality and justice in human societies. The author's goal is (...) not to advocate any particular moral "high ground," but to shed light on the social movements and social processes that are at the root of these seemingly personal moral questions"--Provided by publisher. (shrink)

In Canada, there is interest in expanding medical assistance in dying (MAID) to include advance requests (AR) for people living with dementia (PLWD). However, operationalizing the intolerable suffering criterion for MAID in ARs for PLWD is complicated by the Canadian legal context—in which MAID is understood as a medical intervention and suffering is conceptualized as subjective—and the degenerative nature of dementia. ARs that express a wish to receive MAID when the PLWD develops pre-specified impairments are problematic because people are (...) unlikely to accurately predict the conditions that will cause intolerable suffering. ARs that express a wish to receive MAID when the PLWD exhibits pre-specified behaviors that likely represent suffering are problematic because they are inconsistent with the subjective conceptualization of suffering. Further research is required to determine whether adopting an objective conceptualization of suffering is justified in these cases and, if so, how to reliably identify intolerable suffering in PLWD. (shrink)

This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to (...) be more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies. (shrink)

Ambient Intelligence provides the potential for vast and varied applications, bringing with it both promise and peril. The development of Ambient Intelligence applications poses a number of ethical and legal concerns. Mobile devices are increasingly evolving into tools to orientate in and interact with the environment, thus introducing a user-centric approach to Ambient Intelligence. The MINAmI (Micro-Nano integrated platform for transverse Ambient Intelligence applications) FP6 research project aims at creating core technologies for mobile device based (...) class='Hi'>Ambient Intelligence services. In this paper we assess five scenarios that demonstrate forthcoming MINAmI-based applications focusing on healthcare, assistive technology, homecare, and everyday life in general. A legal and ethical analysis of the scenarios is conducted, which reveals various conflicting interests. The paper concludes with some thoughts on drafting ethical guidelines for Ambient Intelligence applications. (shrink)

This paper examines the ethics of using assistive technology such as video surveillance in the homes of people living with dementia. Ideation and concept elaboration around the introduction of a camera-based surveillance service in the homes of people with dementia, typically living alone, is explored. The paper reviews relevant literature on surveillance of people living with dementia, and summarises the findings from ideation and concept elaboration workshops, designed to capture the views of those involved in the care (...) of people living with dementia at home. The research question relates to the ethical considerations of using assistive technologies that include video surveillance in the homes of people living with dementia, and the implications for a person living with dementia whenever video surveillance is used in their home and access to the camera is given to the person’s family. The review of related work indicated that such video surveillance may result in loss of autonomy or freedom for the person with dementia. The workshops reflected the findings from the related work, and revealed useful information to inform the service design, in particular in fine-tuning the service to find the best relationship between privacy and usefulness. Those who took part in the workshops supported the concept of the use of camera in the homes of people living with dementia, with some significant caveats around privacy. The research carried out in this work is small in scale but points towards an acceptance by many caregivers of people living with dementia of surveillance technologies. This paper indicates that those who care for people living with dementia at home are willing to make use of camera technology and therefore the value of this work is to help shed light on the direction for future research. (shrink)

This nonfiction book for teens examines the complex issue of medical assistance in dying from multiple perspectives.

What is the ethical impact of artificial intelligence assistants on human lives, and specifically how much do they threaten our individual autonomy? Recently, as part of forming an ethical framework for thinking about the impact of AI assistants on our lives, John Danaher claims that if the external automaticity generated by the use of AI assistants threatens our autonomy and is therefore ethically problematic, then the internal automaticity we already live with should be viewed in the same way. He takes (...) advantage of this paradox of internal automaticity to downplay the threats of external automaticity to our autonomy. We respond in this paper by challenging the legitimacy of the paradox. While Danaher assumes that internal and external automaticity are roughly equivalent, we argue that there are reasons why we should accept a large degree of internal automaticity, that it is actually essential to our sense of autonomy, and as such it is ethically good; however, the same does not go for external automaticity. Therefore, the similarity between the two is not as powerful as the paradox presumes. In conclusion, we make practical recommendations for how to better manage the integration of AI assistants into society. (shrink)

When an individual facing intractable pain is given an estimate of a few months to live, does hastening death become a viable and legitimate alternative for willing patients? Has the time come for physicians to do away with the traditional notion of healthcare as maintaining or improving physical and mental health, and instead accept their own limitations by facilitating death when requested? The Universities of Oxford and Cambridge held the 2013 Varsity Medical Debate on the motion “This House Would Legalise (...) Assisted Dying”. This article summarises the key arguments developed over the course of the debate. We will explore how assisted dying can affect both the patient and doctor; the nature of consent and limits of autonomy; the effects on society; the viability of a proposed model; and, perhaps most importantly, the potential need for the practice within our current medico-legal framework. (shrink)

The ethical problems surrounding voluntary assisted suicide remain formidable, and are unlikely to be resolved in pluralist societies. An examination of historical attitudes to suicide suggests that modernity has inherited a formidable complex of religious and moral attitudes to suicide, whether assisted or not. Advocates usually invoke the ending of intolerable suffering as one justification for euthanasia of this kind. This does not provide an adequate justification by itself, because there are (at least theoretically) methods which would relieve (...) suffering without causing the physical death of the suffering person. Carried to extremes, these methods would finish the life worth living, but leave a being which was technically alive. Such acts, however, would provide no moral escape, since they would create beings without meaning. Arguments seeking to justify ending the lives of others need some grounding in concepts of the meaning of a life. The euthanasia discourse therefore needs to take at least some account of the meaning we construct for our lives and the lives of others. (shrink)

Should people suffering from untreatable psychiatric conditions be eligible for physician-assisted death? This is possible in Belgium and the Netherlands, where PAD for psychiatric conditions is permitted, though rare, so long as the criteria of due care are met. Those opposed to all instances of PAD point to Belgium and the Netherlands as a dark warning that once PAD is legalized, restricting it will prove impossible because safeguards, such as the requirement that a patient be terminally ill, will inevitably (...) be eroded or discarded. However, some supporters respond that limiting PAD to those suffering from terminal illness, or physical illnesses generally, is arbitrary and illogical. In addition, precisely because such patients are not terminally ill, their suffering may last for years, even the rest of their lives. Finally, severe depression may not be treatable. If PAD is justifiable under some conditions—as I shall assume in this article—then why wouldn't it be justifiable for these patients? Why shouldn't psychiatrists who have nothing else to offer their suffering patients be able to help them to die, if that is what they want? (shrink)

In lieu of an abstract, here is a brief excerpt of the content:An Open Letter to Certified Nursing Assistants:Lessons from a Life Well Lived1Margaret FletcherI can't be sure what I want to say, or how to say it. Seeing as how I'm now eighty years old, and somewhat forgetful, I cease remembering the good old days.I have written a lot of short articles for the Nursing Assistant Program. My journey of life has been very interesting, very wonderful and fully blessed.My (...) career as a nursing assistant started in my 16th year back in 1947. Once I was involved in the work, [End Page 155] I understood about the journey of life and all the things that living brings into a life of a human being.I learned being a nursing assistant is not just a job and a paycheck. It's a beautiful and wonderful life of kindness, honesty, courtesy, fairness, pity, help, trust and forgiveness.Its principles will take hold of your lifestyle and future. If we realize we are a valuable and unique person, then accepting life with optimism, making sure of our goals, striving to give our best, and growing in awareness helps us learn to be productive and efficient in our work.Understand that everyone and every thing around us has something to teach us. It's not just the classroom learning that's going to put us on the road of good caregiving with a kind loving heart.It's going to take desire, concern and total devotion with lots of hard work. We must learn from the day-to-day needs and expectations of our patients or residents, doctors, wing nurses and the patients' or residents' families.There will be changes, and these changes can be frequent. Therefore, we will need to know and be aware what is expected of us.Now as an old fogy, I'd like to point out that experience is required for developing expertise. And that a sound educational base is necessary for acquiring advanced skills because it forms the best position for developing our ability to sort through concepts and facts. And to focus on the aspects of the various types of patient care situations. It will indicate priorities and offer guidelines for action. Even in seemingly routine situations the nursing assistant must be alert to special circumstances and adapt their care accordingly.Never once did I regret my choice of becoming a caregiver. I can remember one kindhearted doctor who always had his special way for chitchats, telling me, "What you leave behind is not engraved in stone, but what is woven into the lives of other human beings, you must always make the right connections." Then, jokingly, the good doctor asked, "If a cabbage, a tomato, and a faucet ran a race, who would win?" His answer, "The cabbage would be a head, the tomato would ketch up, and the faucet would still be running. Which would you be most like?" My answer, "but doctor, I'm not running a race, I'm on a journey." That journey is life and love. Life is so precious. Where there is love, love makes us whole.No matter what obstacles we face, love gives us the strength to overcome them. As a writer, I'll share in this story. It should be as though we're all family now. Our world is as great as we make it.Realize we all deserve a little lift now and then, but we also need to realize there is no cosmetic for beauty, like happiness. A very personal happiness is what you say and do as a nursing assistant making life better for those entrusted in our care.Down through the years my patients and residents have taught me well what love is really all about. I want to share my lesson with you. Love is friendship that has caught fire, it is quiet understanding, mutual confidence, sharing and forgiving. It is loyalty through good and bad times. Love settles for less than perfection and makes allowances for human weaknesses. Love is content with the present, love hopes for the future, but doesn't brood over the past. Love: it's the day-in... (shrink)

Background: After over 4 years since medical assistance in dying legalization in Canada, there is still much uncertainty about how this ruling has affected Canadian society. Objective: To describe the positive aspects of medical assistance in dying legalization from the perspectives of hospice palliative care providers engaging in medical assistance in dying. Design: In this qualitative descriptive study, we conducted an inductive thematic analysis of semi-structured interviews with hospice palliative care providers. Participants and setting: Multi-disciplinary hospice palliative care providers in (...) acute, community, residential, and hospice care in Vancouver and Toronto, Canada, who have engaged in end-of-life care planning with patients who have inquired about and/or requested medical assistance in dying. Ethical considerations: The research proposal was approved by University of British Columbia Research Ethics Board in Vancouver and University Health Network in Toronto. Participants were informed regarding the research goals, signed a written consent, and were assigned pseudonyms. Results: The 48 participants included hospice palliative care physicians, nurses, social workers, and allied health providers. The average interview length was 50 min. Positive aspects of medical assistance in dying legalization were identified at the individual level: a new end-of-life option, patients’ last chance to express control over their lives, patient and family comfort and relief, and a unique learning experience for hospice palliative care providers; the team level: supportive collegial relationships, broadened discussions about end-of-life and palliative care, and team debriefs provide opportunities for education and support; and the institutional level: improved processes to facilitate the implementation logistics. Conclusion: While being involved in the medical assistance in dying process is complex and challenging, this study sheds light on the positive aspects of medical assistance in dying legalization from the hospice palliative care provider’s perspectives. Medical Assistance in Dying legalization has resulted in improved end-of-life conversations between hospice palliative care providers, patients, and their families. Improved communication leads to a better understanding of patients’ end-of-life care plans and bridges some of the existing gaps between hospice palliative care and medical assistance in dying. (shrink)

A governing principle in medical ethics is respect for patient autonomy. This principle is commonly drawn upon in order to argue for the permissibility of assisted dying. In this paper I explore the proper role that respect for patient autonomy should play in this context. I argue that the role of autonomy is not to identify a patient’s best interests, but instead to act as a side-constraint on action. The surprising conclusion of the paper is that whether or not (...) it is in the best interests for the patient to die is a morally objective matter. This allows for the possibility that it can be in the best interests of the patient to die even if she autonomously considers it to be in her best interest to continue living. I argue that concerns about ‘mandatory’ euthanasia can be met when patient autonomy is respected as a side-constraint on action. Ultimately, this means that assisted dying is permissible, not because the autonomous patient views her suffering to be unbearable, but because it is in her objective best interests and she permitted it via her consent. (shrink)

This article examines the construction of parenthood, drawing on Brazilian cisgender, heterosexual, and homosexual couples' experiences in using assisted reproduction technologies (ART), particularly the surrogacy. For that purpose, we interviewed: 1) a lesbian woman who had her daughter through her partner's pregnancy, using ART with anonymous donor semen; 2) a gay man who, together with his partner, used a surrogacy service under contract via a specialised offshore agency; 3) a woman who was a surrogate, in Brazil, for her sister-in-law (...) and brother who lived abroad and, from abroad, sent an embryo fertilised for surrogacy; 4) a woman who resorted to her sister-in-law in order to be a mother by surrogacy, with ovules from the woman herself fertilised with semen from her husband; and 5) the sister-in-law mentioned in 4), who acted as surrogate for her brother and his wife. These interviews made it possible to think about the discursive construction of the legitimacy of such parenthoods, as it is produced by access to, and manipulation and circulation of, reproductive technologies and persons. This biomedical management of bodies sets up a material and discursive circuit that, in turn, produces a complex web of personal, normative, legal, professional and market relationships, particularly with a view to construction of a parenthood anchored in a notion of biologically-constituted origin. In this respect, biological, affective and social bonds merge to produce a precise placement of who is the father and/or who is the mother, as well as who are the important others and how they are linked to the child in a broader web of parenthood. (shrink)

The majority of the world’s population now lives an urban existence, spending as much as 95% of their lives indoors. The olfactory atmosphere in the built environment has been shown to exert a profound, if often unrecognized, influence over our mood and well-being. While the traditionally malodorous stench to be found indoors (i.e., prior to the invention of modern sanitation) has largely been eliminated in recent centuries, many of the outbreaks of sick-building syndrome that have been reported over the last (...) half century have been linked to the presence of a strange smell in the environment. At the same time, however, there is also growing evidence that consumer behavior can be manipulated by the presence of pleasant ambient odors, while various aromatherapy scents are said to improve our mood and well-being. This Anglophone review focuses primarily on indoor western urban developed spaces. Importantly, the olfactory ambience constitutes but one component of the multisensory atmosphere and ambient odors interact with the visual, auditory, and haptic aspects of the built environment. Surprisingly, the majority of published studies that have deliberately chosen to combine ambient scent with other sensory interventions, such as, for example, music, have failed to increase store sales, or to enhance people’s mood and/or well-being, as might have been expected. Such negative findings therefore stress the importance of considering multisensory congruency while, at the same time, also highlighting the potential dangers that may be associated with sensory overload when thinking about the effect of ambient smell on our well-being. (shrink)

Ethics and ethical behaviour are the fundamental pillars of a civilised society. The focus on ethical behaviour is indispensable in certain fields such as medicine, finance, or law. In fact, ethics gets precedence with anything that would include, affect, transform, or influence upon individuals, communities or any living creatures. Many institutions within Europe have set up their own committees to focus on or approve activities that have ethical impact. In contrast, lesser-developed countries are trying to set up these committees (...) to govern their academia and research. As the first European consortium established to assist academic integrity, European Network for Academic Integrity, we felt the importance of guiding those institutions and communities that are trying to conduct research with ethical principles. We have established an ethical advisory working group within ENAI with the aim to promote ethics within curriculum, research and institutional policies. We are constantly researching available data on this subject and committed to help the academia to convey and conduct ethical behaviour. Upon preliminary review and discussion, the group found a disparity in understanding, practice and teaching approaches to ethical applications of research projects among peers. Therefore, this short paper preliminarily aims to critically review the available information on ethics, the history behind establishing ethical principles and its international guidelines to govern research.The paper is based on the workshop conducted in the 5th International conference Plagiarism across Europe and Beyond, in Mykolas Romeris University, Lithuania in 2019. During the workshop, we have detailed a) basic needs of an ethical committee within an institution; b) a typical ethical approval process ; and c) the ways to obtain informed consent with some examples. These are summarised in this paper with some example comparisons of ethical approval processes from different universities. We believe this paper will provide guidelines on preparing and training both researchers and research students in appropriately upholding ethical practices through ethical approval processes. (shrink)

Patients in Quebec can legally obtain medical assistance in dying (MAID) if they are able to give informed consent, have a serious and incurable illness, are at the end of their lives and are in a situation of unbearable suffering. Since the Supreme Court of Canada’s 2015 Carter decision, access to MAID, under certain conditions, has become a constitutional right. Quebec physicians are now likely to receive requests for MAID from their patients. The Quebec and Canadian laws recognize a physician’s (...) right to conscientious objection, but this right is contested both in the medical ethics literature and in the public sphere. This paper presents the results of a qualitative study conducted with twenty Quebec physicians who did not integrate MAID into their medical practice, either because they were opposed to or deeply ambivalent about MAID. The interviews aimed to explore the reasons – religious and secular – for opposition to or ambivalence towards MAID. The secular reasons given by participants were grouped into four main categories: 1) the ends of medicine and professional identity, 2) the philosophy of palliative medicine and resource allocation in palliative care, 3) benevolent paternalism, the “good death”, and the interests of future selves, 4) the risk of a slippery slope and the protection of vulnerable people. (shrink)

Feminist research on community care and ‘informal carers’ identified this as a women's issue but failed to address the interests and experiences of older and disabled women – those who received ‘care’ One consequence is that such feminist research has implicitly, and sometimes explicitly, undermined disabled women's rights to a home, children and personal relationships. Using qualitative research, the article highlights the actual experience of women whose physical impairment means that they need help with daily living activities, looking at (...) the different circumstances in which such help is received. The disability movement's concept of ‘independent living’ raises particular issues for disabled women. ‘Independent living’ is about having choice and control over the assistance needed, rather than necessarily doing everything for yourself. However, gender inequalities may also inhibit the choice and control that women have in their lives. Assistance can be given within a personal relationship as an expression of love, but disabled women may also experience abusive, restrictive or exploitative relationships. Public services do not generally provide assistance in a way which enables a woman to have choice and control in her life, or even to carry out child-caring or homemaking tasks. The research on the various ways of receiving personal assistance found that those women who were able to purchase their own help were most likely to be living independently, in the sense of exerting choice and control in their lives. Feminist research can help to create a space for disabled women's absent voices, and add to the pressure for change in the way that personal assistance needs are met. This is a human and civil rights issue which has a key impact on the control that disabled women have over their lives. (shrink)

This paper uses the survival strategies of food shelf clients to explore how food access, chronic disease, and spatial isolation shape the lives of low- and no- income urban citizens. The abundant availability of unhealthy food intersects with the presence of long-term health conditions to create a marginalized urban space where low quality commodity food is available, but exacerbates existing health conditions, is difficult to access, and does little to create food security. To survive, clients have normalized a sustenance strategy (...) of going to multiple food serving sites, carrying food long-distances and using SNAP benefits to make ends meet. However, this nourishment strategy is time-consuming and unsafe, demanding that people put themselves in precarious positions and push their bodies farther physically than is healthy. These food procurement strategies exacerbate their marginalization. Qualitative data from food shelf users is used to develop a theory of ambient struggling wherein the struggle for food access is unhealthy and time-consuming, making it difficult to improve their standard of living. (shrink)

During performative artistic projects in Ambient Art, both space and structures of embodiment are constituted. I illustrate this thesis with examples of performative works in music, theatre and art, in order to analyze the transdisciplinary phenomenon of Ambient Art as a complex structure. My point of departure is a model of lived space in which the bodily enactment in the performative artwork produces place and, vice versa, the place of the artwork determines the active body as an immersive (...) aesthetic experience. (shrink)

We live in an era when increasing numbers of babies are conceived through assisted reproduction technologies (ART). Using a comprehensive approach, the present research seeks to contribute to the understanding of gender differences in experiencing and coping with infertility, and in dealing with ART treatment. Our sample consisted of 10 heterosexual couples aged 24 to 43 and the data were collected through semi-structured interviews. In the studied sample, gender differences existed not only in experiences of infertility, but also in (...) understanding it, and in dealing with ART treatment. Responses to stress caused by infertility were stronger in women and they also perceived this stress more intensely than men. For women the central aspect of infertility was the desire for a child, while for men it was perceived more as a socially imposed obligation to fulfill the male role. (shrink)