Dark patterns have received significant attention in literature as interface design practices which undermine users’ autonomy by coercing, misleading or manipulating their decision making and behavior. Individual autonomy has been argued to be one of the normative lenses for the evaluation of dark patterns. However, theoretical perspectives on autonomy have not been sufficiently adapted in literature to identify the ethical concerns raised by dark patterns. The aim of this paper is to conceptualize user autonomy within (...) the context of dark patterns. In this paper, we systematically review 151 dark patterns from 16 taxonomies to understand how dark patterns threaten users’ autonomy. We demonstrate through this analysis that implications for autonomy arise along four dimensions, because autonomy itself can be understood as subsuming several distinguishable concepts. These are agency, freedom of choice, control and independence. We argue that an assessment of whether a design pattern qualifies as ‘dark’ should account for the sense in which autonomy is threatened, as individuals’ rights and expectations of autonomy vary in various contexts and depend upon the interpretation of autonomy. This paper aims to contribute to the development of the normative lens of individual autonomy for the evaluation of dark patterns, as well as for persuasive design more broadly. (shrink)

More and more researchers argue that online technologies manipulate human users and, therefore, undermine their autonomy. We call this the MAL view on online technology because it argues from Manipulation to Autonomy-Loss. MAL enjoys public visibility and will shape the academic discussion to come. This view of online technology, however, fails conceptually. MAL presupposes that manipulation equals autonomy loss, and that autonomy is the absence of manipulation. That is mistaken. In short, an individual can be manipulated (...) while being fully personally autonomous. Internet policy researchers should be aware of this point to avoid looking in the wrong place in future research on manipulative and harmful online technology. (shrink)

Advances in prosthetic design should benefit people with limb difference. But empirical evidence demonstrates a lack of uptake of prosthetics among those with limb difference, including of advanced designs. Non-use is often framed as a problem of prosthetic design or a user’s response to prosthetics. Few studies investigate user experience and preferences, and those that do tend to address satisfaction or dissatisfaction with functional aspects of particular designs. This results in limited data to improve designs and, we argue, (...) this is pragmatically and ethically problematic. This paper presents results of a survey we conducted in 2017 with people with upper limb difference in Australia. The survey sought to further knowledge about preferences surrounding prosthetics and understanding of how preferences relate to user experience, perspective, and context. Survey responses demonstrated variety in the uptake, use and type of prosthetic—and that use of, preferences about, and impacts of prosthetics rely not just on design factors but on various contextual factors bearing on identity and social understandings of disability and prosthetic use. From these results, we argue that non-use of prosthetics could be usefully reframed as an issue of understanding how prosthetics can best support users’ autonomy. This supports the claim that there is a need to incorporate user engagement into design processes for prosthetic limbs, though further work is needed on methods for doing so. (shrink)

It is a common view that artificial systems could play an important role in dealing with the shortage of caregivers due to demographic change. One argument to show that this is also in the interest of care-dependent persons is that artificial systems might significantly enhance user autonomy since they might stay longer in their homes. This argument presupposes that the artificial systems in question do not require permanent supervision and control by human caregivers. For this reason, they need (...) the capacity for some degree of moral decision-making and agency to cope with morally relevant situations (artificial morality). Machine ethics provides the theoretical and ethical framework for artificial morality. This article scrutinizes the question how artificial moral agents that enhance user autonomy could look like. It discusses, in particular, the suggestion that they should be designed as moral avatars of their users to enhance user autonomy in a substantial sense. (shrink)

This paper explores the assumption of autonomy. Several arguments are presented against the assumption of runtime autonomy as a principle of design for artificial intelligence systems. The arguments vary from being theoretical, to practical, and to analytic. The latter parts of the paper focus on one strategy for building non-autonomous systems (the practice view). One critical theme is that intelligence is not located in the system alone, it emerges from a history of interactions among user, builder, and (...) designer over a given set of data as mediated by the system. A second critical theme is that artificially intelligent systems are ongoing projects that must be continuously adapted and revised using joint person-machine efforts. (shrink)

This article reports on ethnographic research into the practical and ethical consequences of the implementation and use of telecare devices for older people living at home in Spain and the United Kingdom. Telecare services are said to allow the maintenance of their users’ autonomy through connectedness, relieving the isolation from which many older people suffer amid rising demands for care. However, engaging with Science and Technology Studies literature on “user configuration” and implementation processes, we argue here that neither (...) services nor users preexist the installation of the service: they are better described as produced along with it. Moving beyond design and appropriation practices, our contribution stresses the importance of installations as specific moments where such emplacements take place. Using Etienne Souriau’s concept of instauration, we describe the ways in which, through installation work, telecare services “bring into existence” their very infrastructure of usership. Hence, both services and telecare users are effects of fulfilling the “felicity conditions” of an achieved installation. (shrink)

This article considers the ethical dimensions of attempts to ‘personalise’ health and social care services in the UK. Personalisation is identified as closely related to efforts to introduce elements of neoliberal marketisation into public service provision, particularly through the introduction of consumer choice for services users. We consider two areas of ethical concern surrounding personalisation: its contribution to social justice agendas and the enhancement of service users’ autonomy. While personalisation in general, and consumer choice in particular, has been presented (...) as positively contributing to both social justice and autonomy, we critically revaluate these claims. We draw on the work of Nancy Fraser and relational theories of autonomy to highlight the ethical complexities of personalisation and the potentially negative effects that the extension of consumer choice may have on promoting social justice and supporting substantive forms of autonomy. We suggest that understanding and negotiating these complexities imposes ethical constraints on the ways in which, and extent to which, health and social care services can be defensibly personalised. (shrink)

Research conducted on Brain-Computer Interfaces has grown considerably during the last decades. With the help of BCIs, users can gain a wide range of functions. Our aim in this paper is to analyze the impact of BCIs on autonomy. To this end, we introduce three abilities that most accounts of autonomy take to be essential: the ability to use information and knowledge to produce reasons; the ability to ensure that intended actions are effectively realized ; and the ability (...) to enact intentions within concrete relationships and contexts. We then consider the impact of BCI technology on each of these abilities. Although on first glance, BCIs solely enhance self-determination because they restore or improve abilities, we will show that there are other positive, but also negative impacts on user autonomy, which require further philosophical and ethical discussions. (shrink)

Mhealth technology is mushrooming world-wide and, in a variety of forms, reaches increasing numbers of users in ever-widening contexts and virtually independent from standard medical evidence assessment. Yet, debate on the broader societal impact including in particular mapping and classification of ethical issues raised has been limited. This article, as part of an ongoing empirically informed ethical research project, provides an overview of ethical issues of mhealth applications with a specific focus on implications on autonomy as a key notion (...) in the debate. A multi-stage model of references to the potential of mhealth use for strengthening some or other form of self-determination will be proposed as a descriptive tool. It illustrates an assumed continuum of enhanced autonomy via mhealth broadly conceived: from patient to user autonomy, to improved health literacy, and finally to the vision of supra-individual empowerment and democratised, participatory health and medicine as a whole. On closer examination, however, these references are frequently ambivalent or vague, perpetuating the at times uncritical use of established autonomy concepts in medical ethics. The article suggests zooming in on the range of autonomy-related aspects against the backdrop of digital innovation and datafied health more generally, and on this basis add to existing frameworks for the ethical evaluation of mhealth more specifically. (shrink)

Service and personal care robots are starting to cross the threshold into the wilderness of everyday life, where they are supposed to interact with inexperienced lay users in a changing environment. In order to function as intended, robots must become independent entities that monitor themselves and improve their own behaviours based on learning outcomes in practice. This poses a great challenge to robotics, which we are calling the “autonomy-safety-paradox” (ASP). The integration of robot applications into society requires the reconciliation (...) of two conflicting aspects: increasing machine autonomy and ensuring safety in end-use. As the level of robot autonomy grows, the risk of accidents will increase, and it will become more and more difficult to identify who is responsible for any damage incurred. However, emphasizing safety impairs the autonomous functioning of the robot. This problem implies the need for a broadened concept of product safety. Our comparative study shows that the institutional framing of the ASP as well as concrete solutions to this problem differs between Europe and Japan in two respects: (1) the understanding of robot agency and (2) the concept of “appropriate” user–robot interaction. (shrink)

Minors with attention-deficit-hyperactivity disorders are liable to use pharmacological treatment against their will and may find their authentic “I” modified. Thus, their use is widely criticized. In this study, the effect of ADHD drugs on adolescents’ personal experience is examined. The goal is to understand how psychological changes that young people experience when they take these medications interrelate with their attitude toward being medicated. Methylphenidate is the most common pharmacological treatment for ADHD. We look into the change that Israeli adolescents (...) undergo when they use it; their experience in controlling the change, and their assessment of the meaning of the change for their lives. Thirty-eight adolescents participated in semi-structured interviews. The findings, analyzed using grounded theory, show that methylphenidate affects the participants’ demeanor, mood, and even preferences. The participants, aware of these effects, apply discretion in taking methylphenidate and thus influence their traits and their willingness to engage in various activities. When needing to prepare for a matriculation exam, for example, they take methylphenidate; when they need to be creative or sociable, they avoid it and enjoy what they consider the advantages of ADHD, such as creativity and spontaneity. As discretionary users, they shape their life stories in a way that makes them more meaningful and diverse, better tailored to their social surroundings, and more useful in maintaining personal autonomy in the course of pharmacological treatment of ADHD. (shrink)

In this paper, we argue that boredom can be an important experience that contributes to personal autonomous agency by providing authentic motivation, and that strategies of social media providers to bind users’ attention to their platforms undermine this authenticity. As discussed in social epistemology and media ethics for a while now, such strategies can lead to so-called epistemic or filter bubbles. Our analysis of the relation between boredom and social media use focuses on a similarly impairing effect of social media (...) on users’ autonomy, which we call authenticity bubbles. (shrink)

To integrate social robots in real-life contexts, it is crucial that they are accepted by the users. Acceptance is not only related to the functionality of the robot but also strongly depends on how the user experiences the interaction. Established design principles from usability and user experience research can be applied to the realm of human–robot interaction, to design robot behavior for the comfort and well-being of the user. Focusing the design on these aspects alone, however, comes (...) with certain ethical challenges, especially regarding the user’s privacy and autonomy. Based on an example scenario of human–robot interaction in elder care, this paper discusses how established design principles can be used in social robotic design. It then juxtaposes these with ethical considerations such as privacy and user autonomy. Combining user experience and ethical perspectives, we propose adjustments to the original design principles and canvass our own design recommendations for a positive and ethically acceptable social human–robot interaction design. In doing so, we show that positive user experience and ethical design may be sometimes at odds, but can be reconciled in many cases, if designers are willing to adjust and amend time-tested design principles. (shrink)

Objectives: To explore mental health service users’ views of existing and proposed compulsory powers.Design: A qualitative study employing in-depth interviews. Participants were asked to respond to hypothetical questions regarding the application of compulsory powers under the Mental Health Act 1983 for people other than themselves.Setting: Community setting in Southeast England.Participants: Mental health service users subject to Supervised Discharge/Guardianship.Results: Participants considered that the use of compulsory powers was justified if there were some ultimate benefit, and if there was evidence of mental (...) health problems, dangerousness, or a lack of insight. However, participants rejected intrusions into their autonomy and privacy.Conclusions: This paper’s participants indicated that the proposed CTO may be unacceptable because it would threaten service users’ autonomy. Service users’ acceptance of proposed changes is conditional and they emphasised the importance of consent; there is no suggestion that consent will be required for the CTO. The findings also have implications for the exploration of mental health service users’ views and how they might contribute to policy, service planning, and research. (shrink)

Interactions between an intelligent software agent and a human user are ubiquitous in everyday situations such as access to information, entertainment, and purchases. In such interactions, the ISA mediates the user’s access to the content, or controls some other aspect of the user experience, and is not designed to be neutral about outcomes of user choices. Like human users, ISAs are driven by goals, make autonomous decisions, and can learn from experience. Using ideas from bounded rationality, (...) we frame these interactions as instances of an ISA whose reward depends on actions performed by the user. Such agents benefit by steering the user’s behaviour towards outcomes that maximise the ISA’s utility, which may or may not be aligned with that of the user. Video games, news recommendation aggregation engines, and fitness trackers can all be instances of this general case. Our analysis facilitates distinguishing various subcases of interaction, as well as second-order effects that might include the possibility for adaptive interfaces to induce behavioural addiction, and/or change in user belief. We present these types of interaction within a conceptual framework, and review current examples of persuasive technologies and the issues that arise from their use. We argue that the nature of the feedback commonly used by learning agents to update their models and subsequent decisions could steer the behaviour of human users away from what benefits them, and in a direction that can undermine autonomy and cause further disparity between actions and goals as exemplified by addictive and compulsive behaviour. We discuss some of the ethical, social and legal implications of this technology and argue that it can sometimes exploit and reinforce weaknesses in human beings. (shrink)

Though we would expect the revelation of the Facebook emotional manipulation study to have had a negative impact on Facebook, its number of active users only continues to grow. As this is precisely the result that Jacques Ellul would have predicted, this paper examines his philosophy of technology in order to investigate the relationship between Facebook and its users and what this relationship means in terms of autonomy. That Facebook can manipulate its users without losing users reveals that Facebook’s (...) autonomy is growing while the autonomy of users is diminishing. The paper concludes by showing that the answer to this increasingly asymmetrical relationship cannot be the creation of review boards and oversight committees as the underlying issues concerning autonomy are existential more than they are ethical. (shrink)

How social media impacts the autonomy of its users is a topic of increasing focus. However, much of the literature that explores these impacts fails to engage in depth with the philosophical literature on autonomy. This has resulted in a failure to consider the full range of impacts that social media might have on autonomy. A deeper consideration of these impacts is thus needed, given the importance of both autonomy as a moral concept and social media (...) as a feature of contemporary life. By drawing on this philosophical literature, we argue that autonomy is broadly a matter of developing autonomy competencies, having authentic ends and control over key aspects of your own life, and not being manipulated, coerced, and controlled by others. We show how the autonomy of users of social media can be disrespected and harmed through the control that social media can have over its users’ data, attention, and behaviour. We conclude by discussing various recommendations to better regulate social media. (shrink)

'Brainjacking’ refers to the exercise of unauthorized control of another’s electronic brain implant. Whilst the possibility of hacking a Brain–Computer Interface (BCI) has already been proven in both experimental and real-life settings, there is reason to believe that it will soon be possible to interfere with the software settings of the Implanted Pulse Generators (IPGs) that play a central role in Deep Brain Stimulation (DBS) systems. Whilst brainjacking raises ethical concerns pertaining to privacy and physical or psychological harm, we claim (...) that the possibility of brainjacking DBS raises particularly profound concerns about individual autonomy, since the possibility of hacking such devices raises the prospect of third parties exerting influence over the neural circuits underpinning the subject’s cognitive, emotional and motivational states. However, although it seems natural to assume that brainjacking represents a profound threat to individual autonomy, we suggest that the implications of brainjacking for individual autonomy are complicated by the fact that technologies targeted by brainjacking often serve to enhance certain aspects of the user’s autonomy. The difficulty of ascertaining the implications of brainjacking DBS for individual autonomy is exacerbated by the varied understandings of autonomy in the neuroethical and philosophical literature. In this paper, we seek to bring some conceptual clarity to this area by mapping out some of the prominent views concerning the different dimension of autonomous agency, and the implications of brainjacking DBS for each dimension. Drawing on three hypothetical case studies, we show that there could plausibly be some circumstances in which brainjacking could potentially be carried out in ways that could serve to enhance certain dimensions of the target’s autonomy. Our analysis raises further questions about the power, scope, and necessity of obtaining prior consent in seeking to protect patient autonomy when directly interfering with their neural states, in particular in the context of self-regulating closed-loop stimulation devices. (shrink)

How one thinks about the relationship between individual autonomy (sometimes referred to as individual willpower or human agency) and technology can influence the way legal thinkers develop policy at the intersection of law and technology. Perspectives that fall toward the `machines control us' end of the spectrum may support more interventionist legal policies while those who identify more closely with the `we are in charge of machines' position may refuse to interfere with technological developments. The concept of soft determinism (...) charts a middle-ground between these two positions and could assist in the formulation of a general theory of the relationship between law and technology. Soft determinism maintains that technological developments are embedded in social, political, economic and other processes, and serve to guide and, potentially, configure future actions and relationships with these technologies, their users, and their subjects: while past technology develops shape the present, individuals and groups can still exert control over these technological developments. (shrink)

The rapid evolution of information, communication and entertainment technologies will transform the lives of citizens and ultimately transform society. This paper focuses on ethical issues associated with the likely convergence of virtual realities and social networks, hereafter VRSNs. We examine a scenario in which a significant segment of the world’s population has a presence in a VRSN. Given the pace of technological development and the popularity of these new forms of social interaction, this scenario is plausible. However, it brings with (...) it ethical problems. Two central ethical issues are addressed: those of privacy and those of autonomy. VRSNs pose threats to both privacy and autonomy. The threats to privacy can be broadly categorized as threats to informational privacy, threats to physical privacy, and threats to associational privacy. Each of these threats is further subdivided. The threats to autonomy can be broadly categorized as threats to freedom, to knowledge and to authenticity. Again, these three threats are divided into subcategories. Having categorized the main threats posed by VRSNs, a number of recommendations are provided so that policy-makers, developers, and users can make the best possible use of VRSNs. (shrink)

The paper examines how technology challenges conventional borders of national legal systems, as shown by cases that scholars address as a part of their everyday work in the fields of information technology (IT)-Law, i.e., computer crimes, data protection, digital copyright, and so forth. Information on the internet has in fact a ubiquitous nature that transcends political borders and questions the notion of the law as made of commands enforced through physical sanctions. Whereas many of today’s impasses on jurisdiction, international conflicts (...) of law and diverging interpretations of statutes can be addressed by embedding legal safeguards in ICT and other kinds of technology, to overcome the ineffectiveness of state action by design entails its own risks, e.g., threats of paternalism hinging on the regulatory tools of technology. Rather than modelling people’s behaviour by design, the article suggests that design policies should respect individual and collective autonomy by decreasing the impact of harm-generating behaviour (e.g., security measures and default settings for data protection), or by widening the range of people’s choices (e.g., user friendly interfaces). (shrink)

Feasting on a plethora of social media platforms, news aggregators, and online marketplaces, recommender systems (RSs) are spreading pervasively throughout our daily online activities. Over the years, a host of ethical issues have been associated with the diffusion of RSs and the tracking and monitoring of users’ data. Here, we focus on the impact RSs may have on personal autonomy as the most elusive among the often-cited sources of grievance and public outcry. On the grounds of a philosophically nuanced (...) notion of autonomy, we illustrate three specific reasons why RSs may limit or compromise it: the threat of manipulation and deception associated with RSs; the RSs’ power to reshape users’ personal identity; the impact of RSs on knowledge and critical thinking. In our view, however, notwithstanding these legitimate concerns, RSs may effectively help users to navigate an otherwise overwhelming landscape. Our perspective, therefore, is not to be intended as a bulwark to protect the _status quo_ but as an invitation to carefully weigh these aspects in the design of ethically oriented RSs. (shrink)

BackgroundThe neurotechnology behind brain-computer interfaces (BCIs) raises various ethical questions. The ethical literature has pinpointed several issues concerning safety, autonomy, responsibility and accountability, psychosocial identity, consent, privacy and data security. This study aims to assess BCI users’ experiences, self-observations and attitudes in their own right and looks for social and ethical implications.MethodsWe conducted nine semi-structured interviews with BCI users, who used the technology for medical reasons. The transcribed interviews were analyzed according to the Grounded Theory coding method.ResultsBCI users perceive (...) themselves as active operators of a technology that offers them social participation and impacts their self-definition. Each of these aspects bears its own opportunities and risks. BCIs can contribute to retaining or regaining human capabilities. At the same time, BCI use contains elements that challenge common experiences, for example when the technology is in conflict with the affective side of BCI users. The potential benefits of BCIs are regarded as outweighing the risks in that BCI use is considered to promote valuable qualities and capabilities. BCI users appreciate the opportunity to regain lost capabilities as well as to gain new ones.ConclusionsBCI users appreciate the technology for various reasons. The technology is highly appreciated in cases where it is beneficial in terms of agency, participation and self-definitions. Rather than questioning human nature, the technology can retain and restore characteristics and abilities which enrich our lives. (shrink)

This study concerns the sociotechnical bases of human autonomy. Drawing on recent literature on AI ethics, philosophical literature on dimensions of autonomy, and on independent philosophical scrutiny, we first propose a multi-dimensional model of human autonomy and then discuss how AI systems can support or hinder human autonomy. What emerges is a philosophically motivated picture of autonomy and of the normative requirements personal autonomy poses in the context of algorithmic systems. Ranging from consent to (...) data collection and processing, to computational tasks and interface design, to institutional and societal considerations, various aspects related to sociotechnical systems must be accounted for in order to get the full picture of potential effects of AI systems on human autonomy. It is clear how human agents can, for example, via coercion or manipulation, hinder each other’s autonomy, or how they can respect each other’s autonomy. AI systems can promote or hinder human autonomy, but can they literally respect or disrespect a person’s autonomy? We argue for a philosophical view according to which AI systems—while not moral agents or bearers of duties, and unable to literally respect or disrespect—are governed by so-called “ought-to-be norms.” This explains the normativity at stake with AI systems. The responsible people (designers, users, etc.) have duties and ought-to-do norms, which correspond to these ought-to-be norms. (shrink)

Informed consent bears significant relevance as a legal basis for the processing of personal data and health data in the current privacy, data protection and confidentiality legislations. The consent requirements find their basis in an ideal of personal autonomy. Yet, with the recent advent of the global pandemic and the increased use of eHealth applications in its wake, a more differentiated perspective with regards to this normative approach might soon gain momentum. This paper discusses the compatibility of a moral (...) duty to share data for the sake of the improvement of healthcare, research, and public health with autonomy in the field of data protection, privacy and medical confidentiality. It explores several ethical-theoretical justifications for a duty of data sharing, and then reflects on how existing privacy, data protection, and confidentiality legislations could obstruct such a duty. Consent, as currently defined in the General Data Protection Regulation – a key legislative framework providing rules on the processing of personal data and data concerning health – and in the recommendation of the Council of Europe on the protection of health-related data – explored here as soft-law – turns out not to be indispensable from various ethical perspectives, while the requirement of consent in the General Data Protection Regulation and the recommendation nonetheless curtails the full potential of a duty to share medical data. Also other legal grounds as possible alternatives for consent seem to constitute an impediment. (shrink)

This article investigates how human life is conceptualized in the design and use of digital assistants and how this conceptualization feeds back into the life really lived. It suggests that a specific way of conceptualizing human life — namely as a set of tasks to be optimized — is responsible for the much-criticized information hunger of these digital assistants. The data collection of digital assistants raises not just several issues of privacy, but also the potential for improving people’s degree of (...) self-determination, because the optimization model of daily activity is genuinely suited to a certain mode of self-determination, namely the explicit and reflective setting, pursuing, and monitoring of goals. Furthermore, optimization systems’ need for generation and analysis of data overcomes one of the core weaknesses in human capacities for self-determination, namely problems with objective and quantitative self-assessment. It will be argued that critiques according to which digital assistants threaten to reduce their users’ autonomy tend to ignore that the risks to autonomy are derivative to potential gains in autonomy. These critiques are based on an overemphasis of a success conception of autonomy. Counter to this conception, being autonomous does not require a choice environment that exclusively supports a person’s “true” preferences, but the opportunity to engage with external influences, supportive as well as adverse. In conclusion, it will be argued that ethical evaluations of digital assistants should consider potential gains as well as potential risks for autonomy caused by the use of digital assistants. (shrink)

The literature on ethics and user attitudes towards AVs discusses user concerns in relation to automation; however, we show that there are additional relevant issues at stake. To assess adolescents’ attitudes regarding the ‘car of the future’ as presented by car manufacturers, we conducted two studies with over 400 participants altogether. We used a mixed methods approach in which we combined qualitative and quantitative methods. In the first study, our respondents appeared to be more concerned about other aspects (...) of AVs than automation. Instead, their most commonly raised concerns were the extensive use of AI, recommender systems, and related issues of autonomy, invasiveness and personal privacy. The second study confirmed that several AV impacts were negatively perceived. The responses were, however, ambivalent. This confirms previous research on AV attitudes. On one hand, the AV features were perceived as useful, while on the other hand, their impacts were negatively assessed. We followed theoretical insights form futures studies and responsible research and innovation, which helped to identify that there are additional user concerns than what has been previously discussed in the literature on public attitudes and ethics of AVs, as well what has been envisioned by car manufactures. (shrink)

The complex health and social circumstances of living-at-risk, frequent users of emergency departments (aREDFUs) in the health jurisdictions of high-income countries, and the related, significant challenges posed for emergency departments and the health care providers working within them, are identified and explored in the paper. Ethical analyses of a set of relevant domains are performed, i.e., individual and relational autonomy considerations, relevant social construction and personal responsibility conceptions, patient welfare principles (beneficence, nonmaleficence, continuity of care), harm reduction methodologies and (...) their applications, health equity, and justice considerations of the distributive, formal and social types. The outcomes of these analyses demonstrate that there are ethically compelling reasons for emergency departments to adopt an ethics-informed, policy-based approach to the longitudinal care and management of living-at-risk, frequent users of emergency departments. From a formal justice perspective, the development and uses of such an approach are justified by a demonstrable relevant difference between living-at-risk, frequent users of emergency departments and other persons and groups of patients who visit emergency departments. We propose an example of such a policy-based approach. Examples of possible, pragmatic applications of this approach, which help ensure that aREDFUs who present to the ED are managed in a fair and optimally consistent manner, are provided for the consideration of an urban emergency department’s policymaking working group. (shrink)

Digital medicine is a medical treatment that combines technology with drug delivery. The promises of this combination are continuous and remote monitoring, better disease management, self-tracking, self-management of diseases, and improved treatment adherence. These devices pose ethical challenges for patients, providers, and the social practice of medicine. For patients, having both informed consent and a user agreement raises questions of understanding for autonomy and informed consent, therapeutic misconception, external influences on decision making, confidentiality and privacy, and device dependability. (...) For providers, digital medicine changes the relationship where trust can be verified, clinicians can be monitored, expectations must be managed, and new liability risks may be assumed. Other ethical questions include direct third-party monitoring of health treatment, affordability, and planning for adverse events in the case of device malfunction. This article seeks to lay out the ethical landscape for the implementation of such devices in patient care. (shrink)

This paper argues that the demands of respect for autonomy in the context of biobanking are fewer and more limited than is often supposed. It discusses the difficulties of agreeing a concept of autonomy from which duties can easily be derived, and suggests an alternative way to determine what respect for autonomy in a biobanking context requires. These requirements, it argues, are limited to provision of adequate information and non-coercion. While neither of these is in itself negligible, (...) this is a smaller set of demands than is often suggested. In particular, it is argued here that securing ‘one time consent’ is consistent with respect for autonomy. Finally, the paper notes that while the demands of respect for autonomy may be less than some suppose, respecting autonomy is not the only way in which biobanks and their users may have moral duties to donors. (shrink)

Along with the rapid development of big data, artificial intelligence, and information technology, the relationship quality between short video applications and users is important for the sustainable development of short video applications. However, the existing studies have explored the mechanism of the role of RQ in a limited way. In order to respond to this critical issue, this study constructs a theoretical model based on attachment theory and combined with self-determination theory, with autonomy needs, competence needs, and relationship needs (...) as influencing factors, emotional attachment as mediating variables and relationship quality as outcome variables, and the moderating role of attachment anxiety in which this study also analyzes the mechanism of short video applications users’ psychological needs on relationship quality by combining the moderating role of AA. In this study, a sample of 512 university students using short video applications was used. The results of the data analysis indicated that EA was significantly influenced by psychological needs that played a positive role in relationship quality and mediated the relationship between psychological needs and relationship quality. The results of further analysis also revealed that attachment anxiety plays a moderating role in the relationship between emotional attachment and relationship quality. This study examines the intrinsic mechanism by which psychological needs affect relationship quality through emotional attachment, reveals the practical effects of short video applications users’ sustained use behavior, and provides a reference for innovative management and business practices of short video applications. (shrink)

Moral Case Deliberations are reflective dialogues with a group of participants on their own moral dilemmas. Although MCD is successful as clinical ethics support, it also has limitations. 1. Lessons learned from individual MCDs are not shared in order to be used in other contexts 2. Moral learning stays limited to the participants of the MCD; 3. MCD requires quite some organisational effort, 4. MCD deals with one individual concrete case. It does not address other, similar cases. These limitations warrant (...) research into complementary ways of providing CES to healthcare professionals. Our research objective was therefore to develop a low threshold CES tool based on a series of MCDs on autonomy in long-term care. We used a qualitative research design in which we analyzed the process and content of a series of MCDs, combined with reflections on the theoretical background of MCD. In total 28 MCDs were analyzed by means of a thematic content analysis. In various rounds of development, the results of the analysis were combined with theoretical reflections on CES. Consequently, the tool was evaluated in three focus groups and adjusted. The CES tool, called ‘moral compass’, guides the users through a series of six subsequent questions in order to methodically reflect on their concrete moral dilemma, in the form of a booklet of 23 pages. It combines a methodical element that encourages and structures a reflection process with a substantive element, including norms, values, options, strategies, and insights regarding dealing with client autonomy. By using data from a series of MCDs, combined with theoretical reflections on MCD, ethics support and moral learning, we developed a thematic, low-threshold CES tool that supports healthcare professionals in daily practice in dealing with moral questions regarding client autonomy. It integrates examples and insights from earlier MCDs on the same topic. The moral compass is not a replacement of, but can be used complementary to MCD. The feasibility and impact of the moral compass need to be investigated in an evaluative follow-up study. The methodology presented in this paper may be used to develop moral compasses on different topics in various healthcare organizations. (shrink)

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities related to their information privacy when using information technology. Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but not in situations (...) involving the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy. (shrink)

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities (IDD) related to their information privacy when using information technology (IT). Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but not (...) in situations involving the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy. (shrink)

The development of artificial intelligence (AI) in medicine raises fundamental ethical issues. As one example, AI systems in the field of mental health successfully detect signs of mental disorders, such as depression, by using data from social media. These AI depression detectors (AIDDs) identify users who are at risk of depression prior to any contact with the healthcare system. The article focuses on the ethical implications of AIDDs regarding affected users’ health-related autonomy. Firstly, it presents the (ethical) discussion of (...) AI in medicine and, specifically, in mental health. Secondly, two models of AIDDs using social media data and different usage scenarios are introduced. Thirdly, the concept of patient autonomy, according to Beauchamp and Childress, is critically discussed. Since this concept does not encompass the specific challenges linked with the digital context of AIDDs in social media sufficiently, the current analysis suggests, finally, an extended concept of health-related digital autonomy. (shrink)

Open Access: Social media participation undermines individual autonomy in ways that ought to concern ethicists. Discussions in the philosophical literature are concerned primarily with egregious conduct online such as harassment and shaming, keeping the focus on obvious ills to which no one could consent; this prevents a wider understanding of the risks and harms of quotidian social media participation. Two particular concerns occupy me: social media participation carries the risks of (1) negatively formative experiences and (2) continuous partial attention (...) due to our habituation to the variable rewards that social media platforms provide. Although social media offer benefits as well as risks, self-knowledge of whether one benefits more than one suffers from one’s social media participation is vexed by the very processes involved in participating. We are not as free to leave social media as we are to enter. I conclude with a consideration and rejection of the objections that the ubiquity of the practice indicates implied consent to risks, and that users of social media can simply choose not to use such communication technologies at all. I argue that we cannot be said to consent to enter into social media usage meaningfully, even implicitly, and we do not all have equally easy options to avoid the contexts that provide the stimuli of persistent desires. (shrink)

Summary Background Self-binding directives instruct clinicians to overrule treatment refusal during future severe episodes of illness. These directives are promoted as having potential to increase autonomy for individuals with severe episodic mental illness. Although lived experience is central to their creation, service users’ views on self-binding directives have not been investigated substantially. This study aimed to explore whether reasons for endorsement, ambivalence, or rejection given by service users with bipolar disorder can address concerns regarding self-binding directives, decision-making capacity, and (...) human rights. Methods This study used qualitative data from an internet-based survey distributed to the mailing list of the UK charity Bipolar UK, which contained multiple closed and open questions on advance decision-making in bipolar disorder. Quantitative analysis of a closed question about self-binding directives had already demonstrated endorsement amongst a very high proportion of participants with bipolar disorder who completed the survey. We conducted thematic analysis of responses from those participants who answered a subsequent open question about reasons for their view. Research was co-produced within a multi-disciplinary team, with clinical, legal, and ethical expertise, and lived experience of bipolar disorder. Ideas and methodologies associated with all these areas of expertise were used in the analysis of these reasons and to gain insight into the thoughts of individuals with bipolar disorder about self-binding directives and associated issues. Findings Between Oct 23 and Dec 5, 2017, 932 individuals with a self-reported clinical diagnosis of bipolar disorder completed the internet survey, with 565 (154 men; 400 women; 11 transgender or other) providing free text answers to the open question. A large majority of respondents endorsed self-binding directives, nearly all describing a determinate shift to types of distorted thinking and decision-making when unwell as their key justification. Responses indicating ambivalence were dominated by logistical concerns about the drafting and implementation of self-binding directives, while those who rejected self-binding directives also cited logistical concerns, validity of their thinking when unwell, and potential contravention of human rights. Interpretation This study is, to our knowledge, the first large study of reasons why mental health service users might endorse or reject the use of self-binding directives. The findings provide empirical support for introducing self-binding directives into mental health advance decision-making practice and policy and may help to address enduring ethical concerns surrounding possible implementation of the directive while a person retains decision-making capacity. The opinions expressed here in responses given by multiple service users with bipolar disorder challenge a prominent view within international disability rights debates that involuntary treatment and recognition of impaired mental capacity constitute inherent human rights violations. Funding The Wellcome Trust . (shrink)

This paper critically examines the extent to which health promoting wearable technologies can provide people with greater autonomy over their health. These devices are frequently presented as a means of expanding the possibilities people have for making healthier decisions and living healthier lives. We accept that by collecting, monitoring, analysing and displaying biomedical data, and by helping to underpin motivation, wearable technologies can support autonomy over health. However, we argue that their contribution in this regard is limited and (...) that—even with respect to their ‘autonomy enhancing’ potential—these devices may deliver costs as well as benefits. We proceed by rehearsing the distinction that can be drawn between procedural autonomy and substantive-relational autonomy. While the information provided by wearable technologies may support deliberation and decision-making, in isolation these technologies do little to provide substantive opportunities to act and achieve better health. As a consequence, wearable technologies risk generating burdens of anxiety and stigma for their users and reproducing existing health inequalities. We then reexamine the extent to which wearable technologies actually support autonomous deliberation. We argue that wearable technologies that subject their users to biomedical and consumerist epistemologies, norms and values also risk undermining processes of genuinely autonomous deliberation. (shrink)

The world famous Eltroxin saga of 2009–2011, which ignited heated public debates in Europe, Canada, and Australia, reveals the problematic nature of standalone autonomy protection cases. Eltroxin is a life-sustaining thyroid hormone replacement medicine used by millions worldwide; it was reformulated in 2008, and around 10% of patients were badly affected. Poor communication and lack of professional information triggered public hysteria as a global wave of complaints about harmful side effects, including hair loss, weight gain, extreme fatigue, headaches, diarrhoea, (...) and heightened heart rates, flooded the media. Israeli Eltroxin users (around 250 thousand people) were similarly unaware. Following many media reports and ministerial regulations, a high-profile consumer class action was launched against Perrigo, the distributor. Ten years of court proceedings culminated in a compensation settlement of approximately US$ 14 million. This relatively low sum covered the injuries of those patients who were physically affected; compensation for standalone autonomy injuries to all patients (who were denied information about changes to their life-sustaining medicine) was refused. The monetary settlement and court decision were hugely disappointing to the class plaintiffs, and a negative signal was sent to the proponents of consumers' and patients' personal autonomy. However, the class action still marked a positive change in pharmaceutical protocols for relations between health authorities, commercial pharmacy entities, and patients/consumers as seen by the proactive communication around a subsequent Eltroxin reformulation in 2020 in Israel, Europe, and South Africa (Aspen Pharmacare, 2020).1 This paper highlights the vast potential value of consumer class action proceedings, and pharmaceutical consumer (patient) class actions in particular, for public welfare and private autonomy. The paper will explain leading Israeli case law related to consumer autonomy protection in tort law and will argue that this law still holds the unique protection of autonomy as a basic human right and accordingly recognises harm to autonomy as a viable form of damage. Additionally, it illustrates why and how consumer protection class actions are an important tool for protection of human rights in general and of patients' rights in particular. (shrink)

Background Self-binding directives (SBDs) are psychiatric advance directives that include the possibility for service users to consent in advance to compulsory care in future mental health crises. Legal provisions for SBDs exist in the Netherlands since 2008 and were updated in 2020. While ethicists and legal scholars have identified several benefits and risks of SBDs, few data on stakeholder perspectives on SBDs are available. Aims The aim of the study was to identify opportunities and challenges of SBDs perceived by stakeholders (...) who have personal or professional experience with legally enforceable SBDs. Methods Data collection was carried out in the Netherlands from February 2020 to October 2021 by means of semi-structured interviews. Participants were selected through purposive sampling and snowball methods. Interviews were conducted with mental health service users (n = 7), professionals (n = 13), and an expert on SBD policy (n = 1), resulting in a total number of 21 interviews. The data were analyzed thematically. Results Perceived benefits of SBDs included increased autonomy, improvement of the therapeutic relationship, possibility of early intervention and prevention of harm, prevention of compulsory care, reduction of the duration of compulsory care and recovery, mitigation of negative experiences around compulsory care, and guidance for professionals in providing compulsory care. Perceived risks included infeasibility of SBD instructions, difficulty in decision-making around SBD activation, limited accessibility of SBDs, disappointment of service users due to non-compliance with SBDs, and limited evaluation and updating of SBD content. Barriers to SBD completion included lack of knowledge of SBDs among professionals, lack of motivation or insight among service users, and lack of professional support for SBD completion. Facilitators of SBD completion and activation included support for SBD completion, involvement of relatives and peer experts, specification of SBD content, and evaluation of compulsory care and SBD content. The new legal framework was regarded as having both positive and negative effects on SBD implementation. Conclusions Stakeholders who have personal or professional experience with legally enforceable SBDs perceive SBDs as having important benefits and tend not to articulate the fundamental ethical concerns about SBDs which can be found in the ethics and legal literature. Instead, they perceive ethical and practical challenges that can be addressed through the implementation of suitable safeguards. (shrink)

Recommender Systems (RecSys) have been around since the early days of the Internet, helping users navigate the vast ocean of information and the increasingly available options that have been available for us ever since. The range of tasks for which one could use a RecSys is expanding as the technical capabilities grow, with the disruption of Machine Learning representing a tipping point in this domain, as in many others. However, the increase of the technical capabilities of AI-powered RecSys did not (...) come with a thorough consideration of their ethical implications and, despite being a well-established technical domain, the potential impacts of RecSys on their users are still under-assessed. This paper aims at filling this gap in regards to one of the main impacts of RecSys: personal autonomy. We first describe how technology can affect human values and a suitable methodology to identify these effects and mitigate potential harms: Value Sensitive Design (VSD). We use VSD to carry out a conceptual investigation of personal autonomy in the context of a generic RecSys and draw on a nuanced account of procedural autonomy to focus on two components: competence and authenticity. We provide the results of our inquiry as a value hierarchy and apply it to the design of a speculative RecSys as an example. (shrink)

Social experimental research commonly employs media to elicit responses from research subjects. This use of media is broadly protected under fair use exemptions to copyright, and creators of content used in experiments are generally not afforded any formal consideration or protections in existing research ethics frameworks. Online social networking sites are an emerging and important setting for social experiments, and in this context the material used to elicit responses is often content produced by other users. This article argues that users (...) may have a reasonable interest in controlling the use of their content in experiments conducted in online social networks. Matters of risk and autonomy in research ethics are explored by analogy to active debates in law over adhesion contracts, moral rights, and the right to be forgotten. The article concludes by considering practical difficulties in identifying and protecting the interests of creators. (shrink)

Contemporary production of machine-based images relay gradually on the autonomy of computing machines. Autonomous computing machines require the interaction with users like Human-Computer-Interaction technology and other interface technologies, especially computing machine-based images must also ask for viewer as an inter-actor, viewer’s participations. Whether this interaction of viewer-user is with machines or with images, if it is an interaction with each individual that have autonomy or self-organization, its interaction will be the interaction of each ecosystem. And the forms (...) of this environmental interaction are an exchange of energy in natural ecosystem or aesthetic communication in art. Hence the aesthetics of future autonomous machine-based images need to focus on a number of mesh-works and the ways of interactions between the aesthetic individuals and their structures, i.e. aesthetic ecosystems. (shrink)

Trust and trustworthiness are essential for good healthcare, especially in mental healthcare. New technologies, such as mobile health apps, can affect trust relationships. In mental health, some apps need the trust of their users for therapeutic efficacy and explicitly ask for it, for example, through an avatar. Suppose an artificial character in an app delivers healthcare. In that case, the following questions arise: Whom does the user direct their trust to? Whether and when can an avatar be considered trustworthy? (...) Our study aims to analyze different dimensions of trustworthiness in the context of mobile health app use. We integrate O'Neill's account of autonomy, trust, and trustworthiness into a model of trustworthiness as a relational concept with four relata: B is trustworthy with respect to A regarding the performance of Z because of C. Together with O'Neill's criteria of trustworthiness (honesty, competence, and reliability), this four-sided model is used to analyze different dimensions of trustworthiness in an exemplary case of mobile health app use. Our example focuses on an app that uses an avatar and is intended to treat sleep difficulties. The conceptual analysis shows that interpreting trust and trustworthiness in health app use is multi-layered and involves a net of interwoven universal obligations. At the same time, O'Neill's approach to autonomy, trust, and trustworthiness offers a normative account to structure and analyze these complex relations of trust and trustworthiness using mobile health apps. (shrink)

The implementation of pre-exposure prophylaxis (PrEP) as a new tool for prevention against HIV raised particular ethical concerns regarding the individuals’ and the collective's best interests in France. It was questioned whether the beneficence of taking or prescribing PrEP regarding its high efficacy to protect people from HIV is always more important than the maleficence represented by the risks involved, such as healthy people taking a pill with side effects, the growth of sexually transmitted infections or the potential generalization of (...) risk-taking sexual behaviour. The main objective of this study was to explore patients’ and health professionals’ ethical questioning on PrEP. Sixty-nine qualitative interviews were conducted with 45 users and 24 healthcare professionals. Overall, this study shows that those primarily concerned by PrEP tend to dismiss ethical questions regarding PrEP itself in the name of its efficacy and the empowerment it allows, but they would rather stress the impact PrEP can have on individuals’ sexual behaviour and how it can affect their autonomy if it is prescribed blindly without taking into consideration the specific living context and life history of each PrEP user. (shrink)

In this journal, Dr Daniel Daly, an American bioethicist, uses a principlist approach (respect for autonomy, non-maleficence, beneficence and justice) to argue that intravenous opiate users should not be denied repeat heart valve replacements if these are medically indicated, ‘unless the valve replacement significantly violates another’s autonomy or one or more of the three remaining principles’.1 In brief outline, the paper seeks to use a widely accepted ethical theory—‘principlism’ as developed by Beauchamp and Childress over the last 40 (...) plus years and eight editions of their ground-breaking book Principles of Biomedical Ethics2—to resolve clinical disagreement about the ethics of denying medically indicated life-prolonging treatment to patients who continue or resume intravenous opiate use. The argument Dr Daly's argument in very brief summary is that in the context of contemporary American medical practice, such treatment is ethically justified—perhaps even ethically required—if requested or accepted by an adequately autonomous patient and thus respects the patient’s autonomy, if it is not harmful to the patient, if it is beneficial to the patient, and if it is fair and just in terms of Aristotle’s formal theory of justice according to which equals should be treated equally while unequals should be treated unequally in proportion to the morally relevant inequality or inequalities. Dr Daly focuses his argument around a typical case description where these conditions are met and therefore where, he concludes, repeat heart valve replacements ought to be provided. As Dr Daly notes, principlism ‘is not without its problems; nonetheless it does provide a viable set of principles that are widely held by medical ethicists and inform the work of ethics committees at many secular medical facilities’. DOI (declaration of interest): The writer of this editorial is a career-long supporter and defender of the use of ‘principlism’ or ‘the four principles …. (shrink)

We propose a conceptual framework for analysing the relationship between social emancipation and alternative technology development. Key is the “functional autonomy” of the collective of users and developers of the technology vis-a-vis state and capital. We draw on previous empirical work about three hacker projects to substantiate the claim that the functional autonomy of hackers rests on three “pillars of autonomy”: technical skill, shared values, and collective memory. These three pillars sustain the autonomy of a community (...) of hackers so that it may successfully resist recuperation attempts by capital. We make this claim in contradistinction to looser constellations of users, citizen scientists, DIY hobbyists, etc., where the functional autonomy tends to be much weaker. Hence, in the latter case, we should expect the actors to be recuperated in short time. The emancipatory promises that they make in regard to their practices, and are often mirrored in the academic literature about user innovation, citizen science, etc., will then turn sour. From this observation, we develop a second-order reflection on the role of the scholar studying purportedly emancipatory technology projects. As against the popular “follow-the-actors” approach, we defend the continued need for scholarly critique. We do so with the caveat that critique must in part be conducted as self-critique. (shrink)

Today we come across new media art projects as post-industrial art services that occur at the intersection of contemporary art, new economy, post-political politics (activism, hacktivism), technosciences and techno lifestyles. The artwork is not a stable object anymore, it is a process, an artistic software, an experience, a service devoted to solving a particular (cultural and non-cultural) problem, a research, an interface which demands from its user also the ability for associative selection, algorithmic (logical) thinking and for procedures pertaining (...) to DJ and VJ culture, such as mixing, cutting, sampling and recombination. The art service is not so much the manufacturing of things as it is a process of reshaping the thing, moving it, repurposing it, connecting it and incorporating it into new contexts and relations. The service presupposes a problem, a challenge or an order to be solved or carried out. The performer of the service is always faced with a certain task, challenged to solve it in a sequence of steps, chosen as economically as possible. The service therefore ends with a solution of the problem (or its removal) and not with the manufacturing of a finished object. The service always implies an algorithmic procedure that has to be as rational as possible, economical, divided into phases, steps, instructions needed for it to be carried out. By defining the new media art in terms of post-industrial service activity, the traditional concepts of aesthetic and autonomous art are left behind and replaced with novel theoretical devices, e.g. software, repurposing, remixing, recombination, rewriting and hybridization. (shrink)

Sedlakova and Traschel (2023) propose limiting the scope and capabilities of psychotherapy-delivering conversational artificial intelligence (CAI), as (1) they deceive some users into thinking they...