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.

The right to assistive technology.

In this paper, I argue that disabled people have a right to assistive technology (AT), but this right cannot be grounded simply in a broader right to health care or in a more comprehensive view like the capabilities approach to justice. Both of these options are plagued by issues that I refer to as the problem of constriction, where the theory does not justify enough of the AT that disabled people should have access to, and the problem of overextension, where the theory cannot adequately identify an upper limit on the AT that people have a right to. As an alternative to these justificatory frameworks, I argue that disabled people are owed access to AT at the expense of nondisabled people as a matter of compensatory justice. That is, I defend the position that disabled people are owed AT as part of due compensation for the harms they experience from being disadvantaged by society's dominant cooperative scheme and the violation of their right to equality of opportunity that such disadvantage entails. I also propose a method for identifying an upper limit to what this right to AT requires. In this way, I argue that compensatory justice avoids both the problem of constriction and the problem of overextension.

The Ethics of Socially Assistive Robots in Aged Care. A Focus Group Study With Older Adults in Flanders, Belgium.

OBJECTIVES: Socially assistive robots (SARs) need to be studied from older adults' perspective, given their predicted future ubiquity in aged-care settings. Current ethical discourses on SARs in aged care are uninformed by primary stakeholders' ethical perceptions. This study reports on what community-dwelling older adults in Flanders, Belgium, perceive as ethical issues of SARs in aged care. METHODS: Constructivist grounded theory guided the study of 9 focus groups of 59 community-dwelling older adults (70+ years) in Flanders, Belgium. An open-ended topic guide and a modified Alice Cares documentary focused discussions. The Qualitative Analysis Guide of Leuven (QUAGOL) guided data analysis. RESULTS: Data revealed older adults' multidimensional perceptions on the ethics of SARs which were structured along three sections: (a) SARs as components of a techno-societal evolution, (b) SARs' embeddedness in aged-care dynamics, (c) SARs as embodiments of ethical considerations. DISCUSSION: Perceptions sociohistorically contextualize the ethics of SAR use by older adults' views on societal, organizational, and relational contexts in which aged care takes place. These contexts need to inform the ethical criteria for the design, development, and use of SARs. Focusing on older adults' ethical perceptions creates "normativity in place," viewing participants as moral subjects.

Ethical concerns with the use of intelligent assistive technology: findings from a qualitative study with professional stakeholders.

BACKGROUND: Advances in artificial intelligence (AI), robotics and wearable computing are creating novel technological opportunities for mitigating the global burden of population ageing and improving the quality of care for older adults with dementia and/or age-related disability. Intelligent assistive technology (IAT) is the umbrella term defining this ever-evolving spectrum of intelligent applications for the older and disabled population. However, the implementation of IATs has been observed to be sub-optimal due to a number of barriers in the translation of novel applications from the designing labs to the bedside. Furthermore, since these technologies are designed to be used by vulnerable individuals with age- and multi-morbidity-related frailty and cognitive disability, they are perceived to raise important ethical challenges, especially when they involve machine intelligence, collect sensitive data or operate in close proximity to the human body. Thus, the goal of this paper is to explore and assess the ethical issues that professional stakeholders perceive in the development and use of IATs in elderly and dementia care. METHODS: We conducted a multi-site study involving semi-structured qualitative interviews with researchers and health professionals. We analyzed the interview data using a descriptive thematic analysis to inductively explore relevant ethical challenges. RESULTS: Our findings indicate that professional stakeholders find issues of patient autonomy and informed consent, quality of data management, distributive justice and human contact as ethical priorities. Divergences emerged in relation to how these ethical issues are interpreted, how conflicts between different ethical principles are resolved and what solutions should be implemented to overcome current challenges. CONCLUSIONS: Our findings indicate a general agreement among professional stakeholders on the ethical promises and challenges raised by the use of IATs among older and disabled users. Yet, notable divergences persist regarding how these ethical challenges can be overcome and what strategies should be implemented for the safe and effective implementation of IATs. These findings provide technology developers with useful information about unmet ethical needs. Study results may guide policy makers with firsthand information from relevant stakeholders about possible solutions for ethically-aligned technology governance.

Ethical adoption: A new imperative in the development of technology for dementia.

INTRODUCTION: Technology interventions are showing promise to assist persons with dementia and their carers. However, low adoption rates for these technologies and ethical considerations have impeded the realization of their full potential. METHODS: Building on recent evidence and an iterative framework development process, we propose the concept of "ethical adoption": the deep integration of ethical principles into the design, development, deployment, and usage of technology. RESULTS: Ethical adoption is founded on five pillars, supported by empirical evidence: (1) inclusive participatory design; (2) emotional alignment; (3) adoption modelling; (4) ethical standards assessment; and (5) education and training. To close the gap between adoption research, ethics and practice, we propose a set of 18 practical recommendations based on these ethical adoption pillars. DISCUSSION: Through the implementation of these recommendations, researchers and technology developers alike will benefit from evidence-informed guidance to ensure their solution is adopted in a way that maximizes the benefits to people with dementia and their carers while minimizing possible harm.

From Healthcare to Warfare and Reverse: How Should We Regulate Dual-Use Neurotechnology?

Recent advances in military-funded neurotechnology and novel opportunities for misusing neurodevices show that the problem of dual use is inherent to neuroscience. This paper discusses how the neuroscience community should respond to these dilemmas and delineates a neuroscience-specific biosecurity framework. This neurosecurity framework involves calibrated regulation, (neuro)ethical guidelines, and awareness-raising activities within the scientific community.

Ethical Design of Intelligent Assistive Technologies for Dementia: A Descriptive Review.

The use of Intelligent Assistive Technology (IAT) in dementia care opens the prospects of reducing the global burden of dementia and enabling novel opportunities to improve the lives of dementia patients. However, with current adoption rates being reportedly low, the potential of IATs might remain under-expressed as long as the reasons for suboptimal adoption remain unaddressed. Among these, ethical and social considerations are critical. This article reviews the spectrum of IATs for dementia and investigates the prevalence of ethical considerations in the design of current IATs. Our screening shows that a significant portion of current IATs is designed in the absence of explicit ethical considerations. These results suggest that the lack of ethical consideration might be a codeterminant of current structural limitations in the translation of IATs from designing labs to bedside. Based on these data, we call for a coordinated effort to proactively incorporate ethical considerations early in the design and development of new products.

Proactive Ethical Design for Neuroengineering, Assistive and Rehabilitation Technologies: the Cybathlon Lesson.

BACKGROUND: Rapid advancements in rehabilitation science and the widespread application of engineering techniques are opening the prospect of a new phase of clinical and commercial maturity for Neuroengineering, Assistive and Rehabilitation Technologies (NARTs). As the field enters this new phase, there is an urgent need to address and anticipate the ethical implications associated with novel technological opportunities, clinical solutions, and social applications. MAIN IDEA: In this paper we review possible approaches to the ethics of NART, and propose a framework for ethical design and development, which we call the Proactive Ethical Design (PED) framework. CONCLUSION: A viable ethical framework for neuroengineering, assistive and rehabilitation technology should be characterized by the convergence of user-centered and value-sensitive approaches to product design through a proactive mode of ethical evaluation. We propose four basic normative requirements for the realization of this framework: minimization of power imbalances, compliance with biomedical ethics, translationality and social awareness. The aims and values of the CYBATHLON competition provide an operative model of this ethical framework and could drive an ethical shift in neuroengineering and rehabilitation.

Ethical Issues Related to IT Adoption by Elderly Persons with Cognitive Impairments.

Ethical issues arise when the risks and benefits of technology use are unclear or controversial, or their access inequitable. This paper presents a preliminary framework for understanding ethical issues related to IT development and adoption by elderly persons with cognitive impairments and their caregivers. The development of the framework relied on a hybrid qualitative approach that draws on several data sources: 1) systematic literature review, 2) focus groups with IT users, and 3) a reflexive researcher-learning diary.Preliminary findings were synthesized into a coherent model that views IT adoption as the outcome of complex interactions between different factors: 1) Personal factors that include the cognitive abilities of the users, as well as their physical and sensory limitations, and 2) Environmental factors that are related to the technology, the caregivers, and the support networks of the user with cognitive impairment. Findings from this project will help better understand, balance, and responsibly address the competing ethical issues at play in technology development and adoption by elderly persons with cognitive impairments and their caregivers.

Ethical challenges related to assistive product access for older adults and adults living with a disability: a scoping review protocol.

BACKGROUND: Despite the surge of research and development in assistive products for older adults and/or people living with disabilities, policies on access and procurement have lagged in responding to the growing demand from users. Developing policies to address these concerns require an understanding of the ethical challenges underlying approaches for providing assistive products. The purpose of this scoping review is to identify and map the literature pertaining to ethical challenges related to assistive product access and procurement to inform policy development. METHODS/DESIGN: We will use established approaches to conducting scoping reviews which include five stages: (1) conducting broad searches to identify potentially relevant literature, (2) refining selection criteria, (3) reviewing search results, (4) mapping literature according to conceptual areas of interest, and (5) summarizing results. We will analyze data by thematically grouping the descriptions of assistive products identified in the included articles and conducting a content analysis to iteratively develop a targeted synthesis of literature focused on ethical challenges in relation to assistive product access and procurement by older adults and/or adults living with disabilities. DISCUSSION: Our scoping review findings will focus on and provide insight about the models, frameworks, and principles that have been used to understand ethical challenges related to technology access and procurement. We will use the findings to help inform a series of citizen panels in Canada to identify Canadians' values and preferences for enhancing equitable access to assistive products.

Ethical challenges in the use of social service robots for elderly people.

Socially assistive robots are increasingly discussed as solutions in care and domestic use for the support of senior adults; however, this raises ethical questions which hitherto have not been considered or were not predictable. The most important questions are those of privacy and data protection, safety and responsibility as well as involvement of vulnerable persons and deception. Consequently, the ethical principles of nonmaleficence, beneficence, autonomy and fairness should be transposed to robotics. Clear answers and solutions are not yet available for every ethical challenge in robotics; however, the development of ethical guidelines for deployment of robots and research in the field of social service robots (SSR) are essential steps in order to embed ethics into dealing with socially assistive robots. This article provides some practical suggestions on this issue from a robotics project.

Ethical Considerations Regarding the Use of Smart Home Technologies for Older Adults: An Integrative Review.

PROBLEM: With the wide adoption and use of smart home applications, there is a need for examining ethical issues regarding smart home use at the intersection of aging, technology, and home environment. PURPOSE: The purpose of this review is to provide an overview of ethical considerations and the evidence on these ethical issues based on an integrative literature review with regard to the utilization of smart home technologies by older adults and their family members. REVIEW DESIGN AND METHODS: We conducted an integrative literature review of the scientific literature from indexed databases (e. g., MEDLINE, CINAHL, and PsycINFO). The framework guiding this review is derived from previous work on ethical considerations related to telehealth use for older adults and smart homes for palliative care. Key ethical issues of the framework include privacy, informed consent, autonomy, obtrusiveness, equal access, reduction in human touch, and usability. RESULTS: Six hundred and thirty-five candidate articles were identified between the years 1990 and 2014. Sixteen articles were included in the review. Privacy and obtrusiveness issues appear to be the most important factors that can affect smart home technology adoption. In addition, this article recommends that stigmatization and reliability and maintenance of the system are additional factors to consider. IMPLICATIONS: When smart home technology is used appropriately, it has the potential to improve quality of life and maintain safety among older adults, ultimately supporting the desire of older adults for aging in place. The ability to respond to potential ethical concerns will be critical to the future development and application of smart home technologies that aim to enhance safety and independence.

The "Second Place" Problem: Assistive Technology in Sports and (Re) Constructing Normal.

Objections to the use of assistive technologies (such as prostheses) in elite sports are generally raised when the technology in question is perceived to afford the user a potentially "unfair advantage," when it is perceived as a threat to the purity of the sport, and/or when it is perceived as a precursor to a slippery slope toward undesirable changes in the sport. These objections rely on being able to quantify standards of "normal" within a sport so that changes attributed to the use of assistive technology can be judged as causing a significant deviation from some baseline standard. This holds athletes using assistive technologies accountable to standards that restrict their opportunities to achieve greatness, while athletes who do not use assistive technologies are able to push beyond the boundaries of these standards without moral scrutiny. This paper explores how constructions of fairness and "normality" impact athletes who use assistive technology to compete in a sporting venue traditionally populated with "able-bodied" competitors. It argues that the dynamic and obfuscated construction of "normal" standards in elite sports should move away from using body performance as the measuring stick of "normal," toward alternate forms of constructing norms such as defining, quantifying, and regulating the mechanical actions that constitute the critical components of a sport. Though framed within the context of elite sports, this paper can be interpreted more broadly to consider problems with defining "normal" bodies in a society in which technologies are constantly changing our abilities and expectations of what normal means.

Home-based care, technology, and the maintenance of selves.

In this paper, I will argue that there is a deep connection between home-based care, technology, and the self. Providing the means for persons (especially older persons) to receive care at home is not merely a kindness that respects their preference to be at home: it is an important means of extending their selfhood and respecting the unique selves that they are. Home-based technologies like telemedicine and robotic care may certainly be useful tools in providing care for persons at home, but they also have important implications for sustaining selfhood in ways that are of value to individuals and those who care for them. I will argue, by appealing to Hilde Lindemann's notion of "holding" persons' identities in place, that technological interventions are not only useful tools for improving and sustaining health and good care at home, but that they may also help to extend our personal identities and relational capacities in ways that are practically and ethically good. Because of these important goods, I will claim that there is a prima facie moral duty to do this "holding" work and that it is best done by family members and loved ones who are well suited to the job because of their history and relationship with the individual that needs to be "held" in place.

A review of contemporary work on the ethics of ambient assisted living technologies for people with dementia.

Ambient assisted living (AAL) 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: (1) the value of the goals of AAL technologies, (2) the special vulnerability of persons with dementia in their private homes, (3) the complex question of informed consent for the usage of AAL technologies.

User-centred health design: reflections on D4D's experiences and challenges.

There is increasing recognition of the importance of user-centred design and testing in the healthcare technology domain. Challenges associated with user and stakeholder involvement in designing solutions for healthcare are recognized in the literature and need to be addressed to facilitate the development of new technology that is usable and acceptable to the end-user. The Devices for Dignity Health Technology Cooperative (D4D) has been involved in a range of technology development projects with an underpinning approach of addressing unmet needs through user involvement. This paper provides practical examples of some of the challenges that occur at different stages during a user-centred design process including ethical approval processes; stakeholder and user recruitment and involvement; eliciting needs from users regarding sensitive and personal issues; and interdisciplinary working. The paper will describe some of the strategies that have been employed by D4D to overcome these challenges and facilitate technology development.

Clinical ethical concerns in the implantation of brain-machine interfaces: part I: overview, target populations, and alternatives.

Recently, implantable brain-machine interfaces (BMIs) for the severely disabled have generated a great deal of excitement in the biomedical community, and clinical trials investigating their use as communication aids have already begun in the United States (these trials are discussed in the "Existing Devices and Trials" section). While the hypothetical societal implications of such devices are often discussed, the relative risks and benefits associated with their clinical use, as well as the alternative options available to patients, are not always part of this discussion. This article therefore seeks to outline the associated ethical concerns of the devices, the user populations for which the devices are intended, and existing noninvasive alternatives.

Creating an assistive technology clinic: the experience of the Johns Hopkins AT clinic for patients with ALS.

For persons with Amyotrophic Lateral Sclerosis (ALS), comprehensive multidisciplinary care can effectively improve overall quality of life from diagnosis to end of life [16]. Considering the rapidly progressive loss in overall function experienced by persons with ALS, it is essential to provide comprehensive multidisciplinary care, including Assistive Technology (AT) services, in an effective and efficient manner. AT is an important adjunctive therapy for people with neurological disability. For people with complex conditions, access to a comprehensive AT clinic can be the best way to access these tools. Unfortunately, few medical centers have invested in AT clinics, and managers may not understand how to go about developing AT resources at their facility. This article chronicles the step-by-step development of The Johns Hopkins Assistive Technology Clinic for persons with ALS. It offers background evidence, the process of program development, and insight into the experience of professional accountability of one occupational therapist turned AT Director. It also details descriptions of the stakeholders and their roles in the development process, funding and ethical considerations, and barriers to implementation. It is hoped that this may provide guidance for teams who may wish to build AT facilities in their own practice settings.

Ethics of using assistive technology in the care for community-dwelling elderly people: an overview of the literature.

OBJECTIVES: This article provides an overview of the international literature on the most important ethical considerations in the field of assistive technology (AT) in the care for community-dwelling elderly people, focused on dementia. METHOD: A systematic literature review was performed. RESULTS: A total of 46 papers met the inclusion criteria. Three main themes were found. The first theme, personal living environment, involves the subthemes privacy, autonomy and obtrusiveness. The second theme, the outside world, involves the subthemes stigma and human contact. The third theme, the design of AT devices, involves the subthemes individual approach, affordability and safety. The often referred to umbrella term of 'obtrusiveness' is frequently used by many authors in the discussion, while a clear description of the concept is mostly absent. CONCLUSION: When it comes to AT use in the care for elderly people living at home, ethical debate appears not to be a priority. The little discussion there relies heavily on thick concepts such as autonomy and obtrusiveness which seem to complicate the debate rather than clarify it, because they contain many underlying ambiguous concepts and assumptions. Most encountered ethical objections originate from the view that people are, or should be, independent and self-determinant. It is questionable whether the view is correct and helpful in the debate on AT use in the care for (frail) elderly people. Other ethical approaches that view people as social and reciprocal might be more applicable and shed a different light on the ethical aspects of AT use.