Developments in the provision of care and support services for disabled and older people across developed welfare states have led to the expansion of personalisation (sometimes called cash-for-care, direct payments, care payments, etc.) schemes, whereby cash is paid in substitute for care services and support. Although these schemes vary considerably in their scope and operation (sometimes paying carers directly, sometimes enabling disabled and older people to act as direct employers, sometimes mixing paid and unpaid care), they share the characteristics of (...) commodifying care and support services and will have a potentially profound impact on the relationship between individuals, families, communities and the welfare state. Although the schemes have been evaluated within their own national contexts, little work has been done so far to explore the theoretical implications of their development and extension, particularly from an ethics of care perspective. This paper intends to fill that theoretical gap by drawing on comparative evidence from several schemes across different national contexts to develop an analysis which draws on feminist theory and an ethics of care approach to examine (a) the gendered policy outcomes and impact of such schemes; (b) a feminist analysis of the governance implications of personalisation; (c) the implications for the gendered division of work, particularly between paid and unpaid care work and between different groups of paid and unpaid carers; (d) an ethics of care analysis of the impact of personalisation over the lifecourse of disabled and older people, and carers; and (e) a discussion of the relationship between commodification, empowerment, citizenship and choice drawing on the work of care ethicists. It will draw conclusions about the outcomes of a range of types of personalisation schemes and thus have implications for theory, policy and practice. (shrink)

This chapter argues that the modernist agenda, currently dominant in mainstream psychiatry, serves as a disempowering force for service users. By structuring the world of mental health according to a technological logic, this agenda is usually seen as promoting a liberation from "myths" about mental illness that led to stigma and oppression in the past. However, it is argued that this approach systematically separates mental distress from background contextual issues and sidelines non-technological aspects of mental health such as relationships, values, (...) and meanings. This move privileges the gaze of the expert doctor who is trained to understand distress in terms of psychopathology. But, as this move empowers the doctor, it disempowers the service user. In part this is because the priorities of modernist psychiatry are generally at odds with the interests and concerns of services users, particularly those who see themselves as survivors of the mental health system. The chapter examines the implications of this for the psychiatrist's role in working with survivors towards recovery. (shrink)

Empowerment, an already central concept in public health, has gained additional relevance through the expansion of mobile health (mHealth). Especially direct-to-consumer self-testing app companies mobilise the term to advertise their products, which allow users to self-test for various medical conditions independent of healthcare professionals. This article first demonstrates the absence of empowerment conceptualisations in the context of self-testing apps by engaging with empowerment literature. It then contrasts the service these apps provide with two widely cited empowerment (...) definitions by the WHO, which describe the term as a process that, broadly, leads to knowledge and control of health decisions. We conclude that self-testing apps can only partly empower their users, as they, we argue, do not provide the type of knowledge and control the WHO definitions describe. More importantly, we observe that this shortcoming stems from the fact that in the literature on mHealth and in self-testing marketing, empowerment is understood as a goal rather than a process. This characterises a shift in the meaning of empowerment in the context of self-testing and mHealth, one that reveals a lack of awareness for relational and contextual factors that contribute to empowerment. We argue that returning to a process-understanding of empowerment helps to identify these apps’ deficits, and we conclude the article by briefly suggesting several strategies to increase self-testing apps’ empowerment function. (shrink)

Empowerment and user participation represents an ideal of power with a strong position in the health sector. In this article we use text analysis to investigate notions of power in a program plan for health workers focusing on empowerment. Issues addressed include: How are relationships of power between users and helpers described in the program plan? Which notions of user participation are embedded in the plan? The analysis is based on Foucault’s idea that power which is made subject (...) to attempts of redistribution will re-emerge in other forms. How this happens, and with what consequences, is our analytical concern. The analysis is contrasted with ‘snapshots’ from everyday life in a nursing home. The program plan communicates empowerment as a democracy-building instrument that the users need. It is a tool for providing expert assistance to the user’s self-help. User participation is made into a tool which is external to the user him-/herself. Furthermore, the analysis shows that the plan’s image of empowerment presupposes an ‘élite user’ able to articulate personal needs and desires. This is not very applicable to the most vulnerable user groups, who thereby may end up in an even weaker position. By way of conclusion, we argue that an exchange of undesirable dominating paternalism for a desirable empowerment will not abolish power, but may result in more covert and subtle forms of power that are less open to criticism. The paper offers insights that will facilitate reflections on the premises for practising empowerment-oriented health care. (shrink)

Purpose This paper aims to show how the production of meaning is a matter of people interacting with technologies, throughout their appropriation and in co-performances. The researchers rely on the case of household-based voice assistants that endorse speaking as a primary mode of interaction with technologies. By analyzing the ethical significance of voice assistants as co-producers of moral meaning intervening in the material and socio-cultural space of the home, the paper invites their informed and critical use as a form of (...) empowerment while acknowledging their productive role in human values. Design/methodology/approach This paper presents an empirically informed philosophical analysis. Using the conceptual frameworks of technological appropriation and human–technological performances, while drawing on the interviews with voice assistants’ users and literature studies, this paper unravels the meaning-making processes in relation to these technologies in the household use. It additionally draws on a Wittgensteinian perspective to attend to the productive role of language and link to wider cultural meanings. Findings By combining two approaches, appropriation and technoperformances, and analyzing the themes of privacy, power and knowledge, the paper shows how voice assistants help to shape a specific moral subject: embodied in space and made as it performatively responds to the device and makes sense of it together with others. Originality/value The researchers show how through making sense of technologies in appropriation and performatively responding to them, people can change and intervene in the power structures that technologies suggest. (shrink)

Although self‐testing apps, a form of mobile health (mHealth) apps, are often marketed as empowering, it is not obvious how exactly they can empower their users—and in which sense of the word. In this article, I discuss two conceptualisations of empowerment as polar opposites—one in health promotion/mHealth and one in feminist theory—and demonstrate how both their applications to individually used self‐testing apps run into problems. The first, prevalent in health promotion and mHealth, focuses on internal states and understands (...) class='Hi'>empowerment as an individual process. However, this version of empowerment has been accused of paternalism and responsibilisation. The second, feminist version considers structural conditions and foregrounds collective, political change, whose realisation is not obviously attainable for an individually used app. By pointing out the flaws of the positions that focus on either internal states or external conditions, and by engaging with theory from critical phenomenology, I argue that the interplay between them is where empowerment can take place. I propose to formulate empowerment in phenomenological terms as a shift in being‐in‐the‐world and discuss how this conceptualisation of empowerment would avoid the criticism of previous empowerment narratives while being realisable by self‐testing apps. (shrink)

Healthcare apps er blevet en omfattende industri. Vi kan ganske gratis downloade tusindvis af apps, som sætter os i stand til at monitorere alt fra vores fysiske form til vores mentale velbefindende, og vi kan gennem denne monitorering, producere endeløse datamængder og viden om os selv og vores liv – altså skabe et «monitoreret mig». Men hvordan forholder vi os til denne mulighed? I nærværende artikel tages udgangspunkt i foreløbige resultater fra et igangværende ph.d. projekt, hvor brugen af apps og (...) biofeedback anvendes i praksis, til at belyse en stigende stressproblematik blandt lærere i den danske folkeskole. Artiklens ærinde er, at tematisere de normer og fortolkningsrammer, som kommer til syne, når aktørerne selv italesætter sit «monitorerede mig» og hernæst diskutere, i hvilken position, disse normer og tolkninger af teknologien i anvendelse, bringer aktøren. Er «det monitorerede mig» en mulighed for frisættende autonomi – en empowerment? Eller bidrager monitoreringen i stedet til individualisering eller patologisering, hvor vi gennem ejerskabet af vores egen fortælling, producerer et overansvar for eksempelvis hvilken behandling vi skal modtage, eller hvordan vores arbejdsmiljø bør være?Nøgleord: Etik, humanistisk sundhedsforskning, selvmonitorering, Ecological Momentary StorytellingEnglish summary: The Monitored Me - empowerment or pathologization?Healthcare apps have become a major industry. We can freely download thousands of apps, that enable us to monitor everything, from our physical condition to our mental well-being, and we can through the monitoring produce endless amounts of data and knowledge about our inner selves and our lives - creating a “monitored me”. But how is this technological possibility dealt with, in practice? The present article presents and discusses results from a case study in which apps and biofeedback were used to illuminate an increasing stress problem among teachers in the Danish preliminary school system. The focus of the article is to analyze the self-interpretation framework that appears when the users of the technology articulate the "monitored me” and hereafter discuss how these self-interpretations position the user. Is “the monitored me” an opportunity for liberating autonomy – for empowerment? Or does it contribute to individualization or pathologization? (shrink)

In communities of user-generated content, systems for the management of content and/or their contributors are usually accepted without much protest. Not so, however, in the case of Wikipedia, in which the proposal to introduce a system of review for new edits (in order to counter vandalism) led to heated discussions. This debate is analysed, and arguments of both supporters and opponents (of English, German and French tongue) are extracted from Wikipedian archives. In order to better understand this division of the (...) minds, an analogy is drawn with theories of bureaucracy as developed for real-life organizations. From these it transpires that bureaucratic rules may be perceived as springing from either a control logic or an enabling logic. In Wikipedia, then, both perceptions were at work, depending on the underlying views of participants. Wikipedians either rejected the proposed scheme (because it is antithetical to their conception of Wikipedia as a community) or endorsed it (because it is consonant with their conception of Wikipedia as an organization with clearly defined boundaries). Are other open-content communities susceptible to the same kind of ‘essential contestation’? (shrink)

Definition of the problemHealth Apps are becoming increasingly important for a preventive and responsible orientation of the health system. Currently, most of these digital health applications (DiGA) are based on so-called self-tracking technologies which record physiological and psychological data via sensors, usually combined with personalized everyday information. In the last few years, these digital developments have launched an intense and clearly polarized debate about the opportunities and dangers of self-tracking in healthcare.ArgumentsAfter a brief overview of medical self-tracking, this essay wants (...) to systematize and check the polarized discourse on the basis of its decisive individual and social potentials. It turns out that self-measurement techniques have long been an integral part of medical practice in diagnostics and therapy.ConclusionThe area of tension between individual empowerment and potential loss of control by the users will be emphasized as being especially important for the implementation of health Apps in primary health care. Finally, possible implications for the current design of the new German Digital Care Law (Digitale-Versorgung-Gesetz) are shown and some existing “blind spots” are highlighted. (shrink)

Many people are concerned about the legitimacy of digital technology companies like Meta. In this paper we show that two existing models for characterizing power – sovereign power and structural power – are inadequate when it comes to digital technology companies. This is because they fail to accommodate something crucial: the uniquely empowering nature of digital power. Companies like Meta empower users to interact by providing them with versatile systems defined by minimalist permission structures. Drawing on Searle’s theory of institutions (...) and Hart’s theory of law, we show how these permission structures facilitate the creation of new powers, as well as new institutions, through the emergence and recognition of new social norms. This means we must ask how entities that provide us with such versatile – and thus unsteerable – means of empowerment can come to be legitimate. We argue that a custodial framework for digital legitimacy can assign responsibility for the patterns of empowerment that are sustained by companies like Meta. (shrink)

Mobile health tools are often said to empower users by providing them with the information they need to exercise control over their health. We aim to bring clarity to this claim, and in doing so explore the relationship between empowerment and autonomy. We have identified three distinct models embedded in the empowerment rhetoric: empowerment as information, empowerment as control, and empowerment as values. Each distinct model of empowerment gives rise to an associated problem. These (...) problems, the Problem of Interpretation, the Value Alignment Problem, and the Priority Problem, show that mobile health tools in their current form are either insufficient for empowerment or are self‐defeating. These digital health technologies encourage users to adopt an individualized conception of autonomy, one that may weaken the doctor–patient relationship and undermine practices in shared decision making, and ultimately may not deliver on improving the health outcomes for those that need it the most. (shrink)

This article uses the theoretical construct of Social Representations to investigate how Community Multimedia Centers (CMCs) – venues that offer public access to Information and Communication Technologies (ICTs) to underserved communities – are perceived by communities in Mozambique, and it discusses how the local population understands these venues as means to foster community empowerment and socio-economic development. In total, 113 participants took part in the study, from six CMCs in different towns of Mozambique. Participants were represented from three different (...) social groups, according to their use of the CMC: staff members, users of both CMC components – telecenter and radio – and radio-only users. The article analyses the Social Representations’ structure, using a Prototypical approach. Findings show that CMCs are seen by local communities as places at which they can receive and exchange information, and also as learning spaces, with the telecenter part focused on the delivery of ICT training and the radio component engaging with educational activities and services in a broader sense. Furthermore, CMCs are perceived as places dedicated almost exclusively to children and young people. The results of this study can help policy makers, practitioners, funding agencies and other relevant stakeholders to improve Mozambican CMCs and leverage their community empowerment potential. (shrink)

The development of electronic personal health records by independent vendors and national health systems is understood to empower patients and create a new kind of consumerism in healthcare. With more personal health information at hand, active participation in the management of health and rational purchasing of healthcare services will be possible. Healthcare systems will also be able to contain costs and achieve sustainability. Based on a careful examination of the literature, we argue that many of the declared benefits of this (...) technology are rather unattainable. As the boundaries between the public and private healthcare sectors become blurred and as employers struggle to reduce health insurance expenses, this proclaimed ‘consumer empowerment in healthcare’ is an attempt to introduce a technology and a business model for centralising all relevant PHI to render them economic. We reflect on the consequences for the ‘empowered’ user and we suggest that this new market device has to separate and individually address sufficiently issues of privacy, confidentiality and security before it can claim a place in the digital healthcare ecosystem. (shrink)

While participation in social media has become everyday practice among young people, there have been few studies examining how youth as social media users are represented in the media discourse. Focusing on the promotional materials of an award-winning and widely-viewed documentary film, The Social Dilemma, this paper examines the media depictions of youth that attract the public’s attention. Through a social semiotic analysis, we analyzed the representational, interactive, and compositional meanings in the poster and trailer to identify how young people (...) have been represented in the media discourse. Our findings show that they are constructed as vulnerable social media users who are manipulated by social media companies. We argue that such depictions of youth not only negate their sense of agency but also ignore their active engagement in the participatory culture afforded by social media. The implications of such depictions propagate a protectionist perspective of youth. This can undermine efforts towards the development of an empowerment approach in digital literacy education. (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)

Even though public awareness about privacy risks in the Internet is increasing, in the evolution of the Internet to the Internet of Things these risks are likely to become more relevant due to the large amount of data collected and processed by the “Things”. The business drivers for exploring ways to monetize such data are one of the challenges identified in this paper for the protection of Privacy in the IoT. Beyond the protection of privacy, this paper highlights the need (...) for new approaches, which grant a more active role to the users of the IoT and which address other potential issues such as the Digital Divide or safety risks. A key facet in ethical design is the transparency of the technology and services in how that technology handles data, as well as providing choice for the user. This paper presents a new approach for users’ interaction with the IoT, which is based on the concept of Ethical Design implemented through a policy-based framework. In the proposed framework, users are provided with wider controls over personal data or the IoT services by selecting specific sets of policies, which can be tailored according to users’ capabilities and to the contexts where they operate. The potential deployment of the framework in a typical IoT context is described with the identification of the main stakeholders and the processes that should be put in place. (shrink)

Augmented reality facial effects represent a new trend in social media communication based on ‘short forms’. The article proposes a tripartite analysis: a semiotic analysis of digital facial effects used to empower the natural users’ faces; a deconstructionist analysis of Spark by Meta, one of the major software applications to create such effects and, finally, a critical reflection on the practices prescribed by Spark and the stereotypical aesthetics of augmented selfies. The conclusion states that such forms of augmented reality effects (...) must be conceived not as oriented to the cognitive improvement of users’ performance but rather as forms of users’ empowerment and self-awareness. (shrink)

In this position paper, we would like to promote the alternative approach positioned between the two extreme positions consisting in refusing any innovation or in adopting technology without questioning it. This approach proposes a reflexive and responsible innovation based on a compromise between industrial and economic potentialities and a common respect of our human rights and values. We argue that the “silence of the chips right” is timely, relevant and sustainable to face ethical challenges raised by IoT such as protecting (...) privacy, trust, social justice, autonomy or human agency. We believe this technical solution may support establishing an ethics of IoT embedded in the technology itself. Our position is not ‘technocratic’: we do not agree with discourses arguing technology can fix problems. Through the responsible research and innovation approach we promote the idea that only human agency and user empowerment constitute a valid answer to the ethical, legal and social issues raised by IoT. (shrink)

It has always been recognised that the practice of social work raises ethical questions and dilemmas. Recently, however, traditional ways of addressing ethical issues in social work have come to seem inadequate, as a result of developments both in philosophy and in social work theory and practice. This collection of thought-provoking essays explores the ethics of social work practice on the light of these changes. Ethical Issues in Social Work provides up to date critical analyses of the ethical implications of (...) new legislation in community care and criminal justice, and of trends in social work thought and policy, such as managerialism, user empowerment, feminism and anti-oppressive practice. This study provides important and stimulating reading for social work students and their teachers, and for all practitioners and managers who are concerned about the ethical dimensions of their work. (shrink)

Mobile health applications (‘health apps’) that promise the user to help her with some aspect of her health are very popular: for-profit apps such as MyFitnessPal, Fitbit, or Headspace have tens of millions of users each. For-profit health apps are designed and run as optimization systems. One would expect that these health apps aim to optimize the health of the user, but in reality they aim to optimize user engagement and, in effect, conversion. This is problematic, I argue, because digital (...) health environments that aim to optimize user engagement risk being manipulative. To develop this argument, I first provide a brief analysis of the underlying business models and the resulting designs of the digital environments provided by popular for-profit health apps. In a second step, I present a concept of manipulation that can help analyze digital environments such as health apps. In the last part of the article, I use my concept of manipulation to analyze the manipulative potential of for-profit health apps. Although for-profit health can certainly empower their users, the conditions for empowerment also largely overlap with the conditions for manipulation. As a result, we should be cautious when embracing the empowerment discourse surrounding health apps. An additional aim of this article is to contribute to the rapidly growing literature on digital choice architectures and the ethics of influencing behavior through such choice architectures. I take health apps to be a paradigmatic example of digital choice architectures that give rise to ethical questions, so my analysis of the manipulative potential of health apps can also inform the larger literature on digital choice architectures. (shrink)

PurposeTo present a generic empowerment ecology framework to guide the operation of Future Centers and to empower Future Center visitors to respond to the challenges facing them and develop and implement innovative solutions.Design/methodology/approachAn in‐depth case study was conducted in Be'er Sheva PISGA Future Center in the educational sector in Israel. Visits to a further 20 Future Centers around the world and a literature review helped to generalize the key findings and develop and validate the framework further.FindingsAlthough empowerment is (...) not always explicitly discussed in Future Centers, it is an important underlying philosophy. The framework developed in this research helps to ensure empowerment issues are systematically addressed and contains four perspectives: operating principles; resources; supporters and processes. These combine to form the empowerment ecology.Research limitations/implicationsThe empowerment ecology framework has been developed from observation predominantly in one Future Center. It should now be more fully tested and validated in other Future Centers.Practical implicationsThis paper provides a framework to help Future Center practitioners and other future oriented working environments stakeholders to explicitly address empowerment issues.Originality/valueThis paper provides a detailed description of the operation of a regionally focused Future Center in the educational sector. The paper presents a novel empowerment ecology framework for use in facilitated user‐centered collaborative working environments, such as Future Centers. (shrink)

This paper examines one particular problem of values in cloud computing: how individuals can take advantage of the cloud to store data without compromising their privacy and autonomy. Through the creation of Lockbox, an encrypted cloud storage application, we explore how designers can use reflection in designing for human values to maintain both privacy and usability in the cloud.

Contemporary design practices, such as participatory design, human-centered design, and codesign, have inherent ethical qualities, which often remain implicit and unexamined. Three design projects in the high-tech industry were studied using three ethical traditions as lenses. Virtue ethics helped to understand cooperation, curiosity, creativity, and empowerment as virtues that people in PD need to cultivate, so that they can engage, for example, in mutual learning and collaborative prototyping. Ethics of alterity helped to understand human-centered design as a fragile encounter (...) between project team members and prospective users, and foregrounds the ethics in these encounters: our tendencies to “grasp the other” and to “program invention.” And pragmatist ethics helped to understand codesign as a process of joint inquiry and imagination, involving the organization of iterative processes of problem setting and solution finding, with moral qualities. When we open the “black boxes” of design practices, we find them filled with ethics. Moreover, it is proposed that design practitioners need to make explicit their practices’ inherent ethical qualities and that they can do that by embracing reflexivity. (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)

Trust relations in the health services have changed from asymmetrical paternalism to symmetrical autonomy-based participation, according to a common account. The promises of personalized medicine emphasizing empowerment of the individual through active participation in managing her health, disease and well-being, is characteristic of symmetrical trust. In the influential Kantian account of autonomy, active participation in management of own health is not only an opportunity, but an obligation. Personalized medicine is made possible by the digitalization of medicine with an ensuing (...) increased tailoring of diagnostics, treatment and prevention to the individual. The ideal is to increase wellness by minimizing the layer of interpretation and translation between relevant health information and the patient or user. Arguably, this opens for a new level of autonomy through increased participation in treatment and prevention, and by that, increased empowerment of the individual. However, the empirical realities reveal a more complicated landscape disturbed by information ‘noise’ and involving a number of complementary areas of expertise and technologies, hiding the source and logic of data interpretation. This has lead to calls for a return to a mild form of paternalism, allowing expertise coaching of patients and even withholding information, with patients escaping responsibility through blind or lazy trust. This is morally unacceptable, according to Kant’s ideal of enlightenment, as we have a duty to take responsibility by trusting others reflexively, even as patients. Realizing the promises of personalized medicine requires a system of institutional controls of information and diagnostics, accessible for non-specialists, supported by medical expertise that can function as the accountable gate-keeper taking moral responsibility required for an active, reflexive trust. (shrink)

Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing (DTC GT), currently is under ethical attack. A common critique aims at the limited validation of the tests as well as the risk of psycho-social stress or adaption of incorrect behavior by users triggered by misleading health information. Here, we examine in detail the specific role of advertising communication of DTC GT companies from a medical ethical perspective. Our argumentative analysis departs from the starting point that DTC GT (...) operates at the intersection of two different contexts: medicine on the one hand and the market on the other. Both fields differ strongly with regard to their standards of communication practices and the underlying normative assumptions regarding autonomy and responsibility. Following a short review of the ethical contexts of medical and commercial communication, we provide case examples for persuasive messages of DTC GT websites and briefly analyze their design with a multi-modal approach to illustrate some of their problematic implications. We observe three main aspects in DTC GT advertising communication: (1) the use of material suggesting medical professional legitimacy as a trust-establishing tool, (2) the suggestion of empowerment as a benefit of using DTC GT services and (3) the narrative of responsibility as a persuasive appeal to a moral self-conception. While strengthening and respecting the autonomy of a patient is the focus in medical communication, specifically genetic counselling, persuasive communication is the normal mode in marketing of consumer goods, presuming an autonomous, rational, independent consumer. This creates tension in the context of DTC GT regarding the expectation and normative assessment of communication strategies. Our analysis can even the ground for a better understanding of ethical problems associated with intersections of medical and commercial communication and point to perspectives of analysis of DTC GT advertising. (shrink)

Diverse agricultural technologies are promoted to increase yields and incomes, save time, improve food and nutritional security, and even empower women. Yet a gender gap in technology adoption remains for many agricultural technologies, even for those that are promoted for women. This paper complements the literature on gender and technology adoption, which largely focuses on reasons for low rates of female technology adoption, by shifting attention to what happens within a household after it adopts a technology. Understanding the expected benefits (...) and costs of adoption, from the perspective of women users in households with adult males, can help explain observed technology adoption rates and why technology adoption is often not sustained in the longer term. Drawing on qualitative data from Ethiopia, Ghana, and Tanzania, this paper develops a framework for examining the intrahousehold distribution of benefits from technology adoption, focusing on small-scale irrigation technologies. The framework contributes to the conceptual and empirical exploration of joint control over technology by men and women in the same household. Efforts to promote technology adoption for agricultural development and women’s empowerment would benefit from an understanding of intrahousehold control over technology to avoid interpreting technology adoption as an end in and of itself. (shrink)

This study aims to show the contribution of Amartya Sen’s capabilities approach to professional mental health practice. To do so, the text first clarifies the transformation that has occured in the mental health field over the last 50 years. The “recovery”, with its emphasis on the empowerment of the user, testifies to this renewal. In a second part, the capabilities approach of Amartya Sen is presented. If its aim is to strengthen the power of individuals to choose the life (...) they aspire to lead, there is then the problem of people who are deprived of the freedom to choose. Here then is the issue of justice that is inseparable from freedom. The third part of the study addresses the contribution of Sen’s thinking to professional practice in mental health. What more does it offer than what recovery already brings with the valorisation of the autonomy of the subject? Here is discussed its anthropological foundation, as well as the implications for the practice of caregivers. Thus, in conclusion, the reader can see that Sen’s approach modifies the classical bioethics perspective in force since the 1980s. (shrink)

A key feature of unregulated mHealth research is the diversity of participants in this space. Applying an approach drawn from user experience design, we describe a set of archetypal unregulated mHealth researcher “personas,” which range from individuals who seek empowerment or have philanthropic objectives to those who are primarily motivated by financial gain or have misanthropic objectives. These descriptions are useful for evaluating policies applicable to mHealth to understand how they will impact various stakeholders.

In this paper, I discuss the formation of habits with the help of self-tracking technologies. Although devices like Fitbit smart bands come with promises of empowerment through the means of increased control over users’ habits, existing literature does not provide conclusive findings about the validity of such claims. I contribute to the ongoing debate by relying on John Dewey’s pragmatist philosophy and its notion of intelligent habit. I demonstrate that from a pragmatist standpoint, habits that are the most likely (...) to accomplish users’ goals contribute to their flourishing need to be reflective (accompanied by adequate deliberation) and flexible (adaptable to the changing circumstances). On this basis I highlight some ethical-epistemic issues surrounding self-tracking technologies that inhibit the formation of habits desirable from a Deweyan standpoint. These include a lack of reflection on the part of the developers, difficulties for users to deliberate and consciously shape the habits developed by their devices, and dependence upon self-tracking tools that makes it difficult to adapt habits to individual needs and circumstances. I conclude the paper by discussing self-tracking’s general impact on flourishing, as well as placing my arguments in the context of the diversity of self-tracking practices and identifying how users attempt to alleviate the shortcomings of the technology and make it more suitable to their goals and needs. (shrink)

In 2004 prenatal risk assessment was implemented as a routine offer to all pregnant women in Denmark. It was argued that primarily the new programme would give all pregnant women an informed choice about whether to undergo prenatal testing. On the basis of ethnographic fieldwork in an ultrasound clinic in Denmark and interviews with pregnant women and their partners, we call into question the assumption underlying the new guidelines that more choice and more objective information is a source of (...) class='Hi'>empowerment and control. We focus on one couple's experience of PRA. This case makes it evident how supposed choices in the context of PRA may not be experienced as such. Rather, they are experienced as complicated processes of meaning-making in the relational space between the clinical setting, professional authority and the social life of the couples. PRA users are reluctant to make choices and abandon health professionals as authoritative experts in the face of complex risk knowledge. When assumptions about autonomy and self-determination are inscribed into the social practice of PRA, authority is transferred to the couple undergoing PRA and a new configuration of responsibility evolves between the couple and their relationship to the foetus. It is argued that al-though the new programme of prenatal testing in Denmark presents itself in opposition to quasi-eugenic and paternalistic forms of governing couples' decisions it represents another form of government that works through the notion of choice. An ethics of a shared responsibility of PRA and its outcome would be more in agreement with how decisions are actually made. (shrink)

This article examines an innovative experiment in democratizing international broadcasting through embracing a participatory model of production. In spring 2010, a political debate television series was co-created by BBC Arabic and citizen producers, using social media tools. Based around interviews with prominent political and controversial public figures, the programme (G710) was broadcast weekly on satellite TV across the Middle East and the Arabic-speaking world. Combining collaborative ethnography with corporate ‘big data’ analysis, the research team followed the experiment from conception to (...) premature closure. The article argues that the kinds of digital tools deployed in producing the programme, and used by BBC audience research to monitor user practices in real time, have become essential to corporate processes of BBC World Service governance and management procedures, business strategy, accountability measures, marketing practices and editorial decision-making. They act as change agents, presenting methodological problems and opportunities for the BBC’s audience researchers and academic researchers, as well as symbolizing the contradictory logic of empowerment and surveillance. (shrink)

This article examines the linguistic construction of textual messages in the use of blogs and Twitter in the Nigerian 2007 electoral cycle comprising the April 2007 general elections and rerun elections in April, May, and August 2009. A qualitative approach of discourse analysis is used to present a variety of discursive acts that blogging and microblogging afford social media users during the electoral cycle. The data are culled from 245 blog posts and 923 tweets. The thesis of the study is (...) that citizens’ access to social media electronically empowers the electorates to be actively involved in democratic governance. Electronic empowerment is a direct result of access to social media (and mobile telephony) by more citizens who constitute the electorates. This encourages more public discussions about politics and makes the democratic process more dynamic than in the pre—social media era. An analysis of the data shows that there is a dialectical relationship between social media discourse and the process of political empowerment. (shrink)

The Internet has been identified in human enhancement scholarship as a powerful cognitive enhancement technology. It offers instant access to almost any type of information, along with the ability to share that information with others. The aim of this paper is to critically assess the enhancement potential of the Internet. We argue that unconditional access to information does not lead to cognitive enhancement. The Internet is not a simple, uniform technology, either in its composition, or in its use. We will (...) look into why the Internet as an informational resource currently fails to enhance cognition. We analyze some of the phenomena that emerge from vast, continual fluxes of information–information overload, misinformation and persuasive design—and show how they could negatively impact users’ cognition. Methods for mitigating these negative impacts are then advanced: individual empowerment, better collaborative systems for sorting and categorizing information, and the use of artificial intelligence assistants that could guide users through the informational space of today’s Internet. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Finding PartnershipThe Benefit of Sharing and the Capacity for ComplexityMichaela Amering (bio)Keywordsrecovery, empowerment, trialog, user involvement, schizophreniaIs There Ignorance and Arrogance? In Psychiatry? In Medicine?Adding insight to injury' is the paraphrase psychiatrist Pat McGorry (1992) coined for his reproach of 'pushing for "insight" or "acceptance of diagnosis"' without carefully taking into account the complexities of the individual situation, context, and needs. That must be about the kind of (...) behavior Marga Reimer has in mind in her paper on treatment adherence in the absence of insight, which depicts mental health professionals characterized by arrogance against the common sense of motivating compliance by perceived or anticipated benefits on different everyday life levels, but instead trying to get people to believe in a mental illness such as schizophrenia and wishing them to want treatment for that in the form of medication.In addition, Reimer presents examples from general medicine to make her point that adherence follows perceived or anticipated benefits instead of being a result of insight into a medical model of illness and McGorry (1992) also suggests that disregard for the active role that patients may play as reflected in psychiatry in terms such as 'case management' and 'compliance' "is a failing which extends to mainstream medicine and probably to most systems of human service delivery." On the other hand, Bill Anthony (2006), one of the most eminent experts on psychiatric rehabilitation and recovery in a personal report on his own medical illness, multiple sclerosis—MS, and the assistance he has been receiving in connection with it, describes the 'MS-Community' as exemplary with respect to instilling courage and hope, continually providing information and opportunities for exchange, and for never questioning a person's ultimate freedom of choice. In contrary, in mental health care he does not experience the medical profession as acting with full respect and support for its patients and suggests a great deal more work and transformation—especially concerning coercive treatments—ahead to follow this example. Similarly, it has been suggested that psychiatry should be better integrated into medicine to overcome stigma and discrimination of psychiatric health problems and interventions. A pertinent example of an initiative in this direction is the proposal of a fusion of mental health and incapacity legislation to arrive at ethically consistent legal situations with regard to involuntary [End Page 77] treatment across medicine (Dawson and Szmukler 2006).Is There Something Called Schizophrenia? and How Much Longer?Reimer's main example—schizophrenia—is the diagnosis that poses some of the greatest problems to the field and to the recognition of psychiatry as a scientific medical discipline. The current concept as well as the term 'schizophrenia' will probably not be around much longer; 'a century of schizophrenia is enough' (Kelly and Murray 2002). Suggested solutions for the problems of the diagnosis of schizophrenia concern the urgent complement of the categorical with a dimensional approach (Allardyce et al. 2007), a change also put forward as one of the essential remedies to undermine the stigma of mental illness that is often exacerbated by clinical diagnosis (Corrigan 2007). Such a move would also clearly help against the still prevalent experiences of users of services and their families and friends, whose hopes and dreams have been crushed and whose resilience has been undermined by clinical situations, which in times of psychotic crises, not only forced diagnoses but also prognoses—often scientifically unfounded—on them (Amering and Schmolke 2009).Is There a Solution? Can We Use Our Talents? And Those of People With a Lived Experience of Mental Health Problems and Care?Clinicians as well as scientists know that health, illness, and recovery occur in complex ways and contexts. People faced with mental health problems clearly realize the complexities of their situation and are especially motivated to appreciate the variety of factors and interactions that need to be integrated to arrive at a valid assessment. Ideally, the therapeutic relationship—essentially a partnership—holds a formidable chance of sharing efforts and creating the wisdom for finding and facing the truths necessary to develop solutions that can uphold and work in line with the complexities of human life.I would argue that psychiatric professionals are certainly part... (shrink)

The pandemic and subsequent wave of lockdowns in many countries led to a massive increase in TikTok users globally, boosting the platform’s public significance. Even if TikTok’s political potential is already established, the platform still lacks a theoretical underpinning as a space for action. Using both a political-philosophical as well as a techno-philosophical perspective, I seek to discuss and substantiate TikTok’s potential as a public realm that enables political action. Due to the unique algorithmic logic of this app, I argue (...) that users are acting-with the algorithm when engaging in political action from home: be it in the form of national political protest or international acts of care and empowerment. I base my analysis on philosophical theory, cross-disciplinary TikTok research, and my own experiences on TikTok during the pandemic years. (shrink)

This paper presents a literature review on the ethics of self-tracking technologies which are utilized by users to monitor parameters related to their activity and bodily parameters. By examining a total of 65 works extracted through a systematic database search and backwards snowballing, the authors of this review discuss three categories of opportunities and ten categories of concerns currently associated with self-tracking. The former include empowerment and well-being, contribution to health goals, and solidarity. The latter are social harms, privacy (...) and surveillance, ownership control and commodification of data, autonomy, data-facilitated harm, datafication and interpretability of data, negative impact on relation to self and others, shortcomings of design, negative impact on health perception, and regulation and enforcement of rules. The review concludes with a critical analysis of the existing literature and an overview of a future research agenda that could complement the current work on ethics of self-tracking. (shrink)

Quality of life is an important outcome measure in mental health care. Currently, QoL is mainly measured with paper and pencil questionnaires. To contribute to the evaluation of treatment, and to enhance substantiated policy decisions in the allocation of resources, a web-based, personalized, patient-friendly and easy to administer QoL instrument has been developed: the QoL-ME. While human values play a significant role in shaping future use practices of technologies, it is important to anticipate on them during the design of the (...) QoL-instrument. The value sensitive design approach offers a theory and method for addressing these values in a systematic and principled manner in the design of technologies. While the VSD approach has been applied in the field of somatic care, we extended the VSD approach to the field of mental healthcare with the aim to enable developers of the QoL-instrument to reflect on important human values and anticipate potential value conflicts in its design. We therefore explored how VSD can be used by investigating the human values that are relevant for the design of the QoL-ME. Our exploration reveals that the values autonomy, efficiency, empowerment, universal usability, privacy, redifinition of roles, of responsibilites, reliability, solidarity, surveillance and trust are at stake for the future users of the technology. However, we argue that theoretical reflections on the potential ethical impact of a technology in the design phase can only go so far. To be able to comprehensively evaluate the usability the VSD approach, a supplementary study of the use practices of the technology is needed. (shrink)

SALMON A, BROWNE AJ, and PEDERSON A. Nursing Inquiry 2010; 17: 336–345 ‘Now we call it research’: participatory health research involving marginalized women who use drugsIn this paper, we discuss and analyse the strategies employed and challenges encountered when conducting a recent feminist participatory action research study with highly marginalized women who were illicit drug users in an inner city area of Vancouver, Canada. Through an analysis of the political economy of participatory praxis within current neoliberal contexts, we focus on (...) three main areas: (i) reconceptualizing the pragmatics of participation; (ii) the microeconomic implications of participatory research, including ethical issues in payment for research participation; and (iii) the value and limits of using research as a tool for activism and empowerment. We conclude with a brief discussion of what we see to be some of the most salient social justice implications arising from feminist and participatory approaches to health research within neoliberal political spaces. (shrink)

In this article, the right to health is discussed as a social right and an essential requisite in the construction and guarantee of human rights, more precisely human dignity, considering this right as a complex but effective process in the transformation of the social reality. In the first place, the activities of the public power and its difficulties to guarantee universal access to health are highlighted. This scenario ends up inhibiting the practice of the right to health and prevents users (...) from enjoying and using it. In that sense, this article challenges and explores some alternatives to solidify and put in practice the right to health in Brazil. Departing from the analysis of the Unified Health System (SUS) and social participation in Brazil, this article discusses the judicialization of health in the country, highlighting the difficulties the State faces to equitably offer universal healthcare to society. This context offers an opportunity for reflection and a paradigm change, from the “judicialization of health” to the “judicialization of health policies.” Finally, the public health policies adopted by other countries are emphasized, in the attempt to construct the empowerment of human beings in the practice of their rights, particularly social participation and the discussion about the States’ responsibility to put their citizens’ right to health in practice. In conclusion, the political and collective construction of the right to health needs to be encouraged, distinguishing the legitimate interests of the different interlocutors involved. (shrink)

Participation of older people in designing and improving the care and services provided in residential care settings is limited. Traditional forms of democratic representation, such as client councils, and consumer models are management-driven. An alternative way of involving older people in the decisions over their lives, grounded in notions of care ethics and deliberative democracy, was explored by action research. In line with this tradition older people engage in collective action to enhance the control over their lives and those of (...) others. In this article the theoretical background of altruistic action is presented and illustrated by a case example of a group of older women who changed the food policies within their residential home. Altruistic action is the joint and coordinated action by a group of clients based on their agenda. Such action is given in by a shared dissatisfaction and search for connections. Altruistic action may enhance the sense of self, belonging and ownership, and create a transformative movement enhancing the wellbeing and community life in residential settings. (shrink)

In this article, the right to health is discussed as a social right and an essential requisite in the construction and guarantee of human rights, more precisely human dignity, considering this right as a complex but effective process in the transformation of the social reality. In the first place, the activities of the public power and its difficulties to guarantee universal access to health are highlighted. This scenario ends up inhibiting the practice of the right to health and prevents users (...) from enjoying and using it. In that sense, this article challenges and explores some alternatives to solidify and put in practice the right to health in Brazil. Departing from the analysis of the Unified Health System (SUS) and social participation in Brazil, this article discusses the judicialization of health in the country, highlighting the difficulties the State faces to equitably offer universal healthcare to society. This context offers an opportunity for reflection and a paradigm change, from the “judicialization of health” to the “judicialization of health policies.” Finally, the public health policies adopted by other countries are emphasized, in the attempt to construct the empowerment of human beings in the practice of their rights, particularly social participation and the discussion about the States’ responsibility to put their citizens’ right to health in practice. In conclusion, the political and collective construction of the right to health needs to be encouraged, distinguishing the legitimate interests of the different interlocutors involved. (shrink)

Femtech refers to a growing range of technologies that aim to address health needs typically associated with women’s bodies, such as maternal health, fertility, menstruation, sexual wellness, or contraception. We examine a specific popular femtech product, cycle tracking apps, as an instrument of self-surveillance for greater productivity. Our analysis is grounded in the phenomenology of temporality—we understand workplace surveillance technologies as advancing an internalized sense of time discipline, generating a personal experience of time as a constant call to improve one’s (...) workplace productivity. We then examine how the same dynamic reveals itself in the vocabulary and functionality of popular cycle-tracking apps. Our paper contributes to the existing feminist critiques of femtech, namely, the examination of cycle-tracking apps as promoting a false sense of empowerment and separating users from self-knowledge of their bodies. We argue that cycle-tracking apps perpetuate the attitude that menstruators need to manage their cycle for the sake of reliable participation in productivity demands, creating a disconnect between their internal experience of the temporality of menstruation and external pressures. (shrink)

This research examines the knowledge constructed in political ironic discourses, which is associated with different models of practicing self-censorship, taking a case study of the 2017 Hong Kong Chief Executive Election via social media Weibo. Critical discourse analysis, the verbal irony principle and semi-structured interviews were employed to compare participants from mainland China and Hong Kong, including opinion leaders and casual users. This research suggests a three-stage analytical framework that clearly emphasizes the act of rhetorical discourse and the practice of (...) self-censorship. As such, it reveals citizens’ intrinsic motivation related to self-efficacy, resistance or empowerment. This research argues that dissidents’ shared knowledge and ideology are structurally represented in the ‘binary opposition’ mode of rhetorical discourse, concerning the discursive construction of Hong Kong identity. The proliferation of rhetorical discourse, evolving shoulder to shoulder with Internet self-censorship, results from the complexity of politics, history and digital technology development within China. (shrink)

PurposeThe purpose of this paper is to introduce readers to the social and ethnical dimensions of information science.Design/methodology/approachThe paper provides a literature survey on the concept of information science and its history. It describes the different developments involved in the development of information science as a research field. It present various definitions and domains of the field that represent different stages of information science evolution.FindingsThis paper presents an updated image of information science as a research field that takes into consideration (...) a user centered approach and social and ethical issues that are involved in the information processes.Originality/valueThe paper describes the contribution of information science to social and ethical aspects of the information age such as: individual empowerment, education toward information awareness, information needs, the problem of decision making, manipulation of search result on the web and the role of the information professionals in diminishing digital divide. (shrink)

Unquestionably, the zeitgeist of Web 2.0 is symbolized by the dominance of social networking sites (SNS) and user-created content (UCC). MySpace, Facebook, and Cyworld mini-hompy are but a few examples of SNS that are becoming increasingly part of urban everyday life and interwoven into the historicity of the Internet. Web 2.0 has promised much about new forms of participation, creation, collaboration, and authorship, and yet within each location, we can find examples of both empowerment and exploitation. This is particularly (...) the case in the divergent region of the Asia-Pacific. Rather than the region being a sum of “imagined communities” (Anderson 1983), this paper argues that the distributed social networks of Web 2.0 UCC is formed, informed, and maintained through the perpetual process of “imaging communities.” These imaging communities can be seen in the visual, textual, and aural modes of UCC and can be seen to reflect the region’s new technocultural cartographies. (shrink)

There is a long-standing failure to create an ethical culture around substance use disorders (SUDs) or dependence that actively supports people’s recovery efforts. Issues which impede the development of prorecovery environments are complex, but include the far-reaching effects of the social stigma that surrounds SUDs; and the failure to harness relational and social support that allows debates to transcend blaming individual substance users. As part of efforts to create prorecovery environments, it is important to acknowledge that bioethics debate on SUDs (...) is narrow in scope, prioritising topics related to its traditional interests in individual autonomy and novel technologies. As a result, it has not played a significant role in helping to transform the ethical cultures in which substance use recovery takes place. For example, it largely neglects the ethical challenges of developing an empathic, person-centred approach to substance use problems that listens and responds to the voices of clients. It has also participated little in efforts to develop a positive response to reducing the toxic effects of stigma. Indeed, some contributions from the field fan stigma, rather than alleviate it. The aim of this paper is to seed broader ethical debate, in academic literature and lay/professional communities, on how societies should respond to SUDs: steering a course between the critical, but narrow approach of bioethics and the empowerment discourse of evidence-based treatments. (shrink)

Background In April 2019, our hospital transitioned to an electronic patient record system and patient portal. MyGOSH enables young people aged 12 years or older and their parents to access results, documentation, appointments, and to communicate with their care team. Aims A focus group was conducted to explore the ethical and legal considerations of young people and their parents using a patient portal from the perspective of hospital Ethics Committee members. Participants and research context Members of the hospital Paediatric Bioethics (...) Centre were recruited. Written informed consent was provided by all participants. Research design The focus group discussion was recorded, transcribed verbatim and analysed using thematic analysis. Ethical considerations Health Research Authority Research Ethics Committee Approval was granted by London Southeast REC. Results Four themes, and sub-themes, were identified: granting access – complexities of assessing competence/capacity, exclusion from MyGOSH due to non-disclosure of diagnosis, and truth-telling; inequalities resulting in inequities – complexities of inequity in access; responding to change – providing support and managing expectations; engagement, empowerment and understanding – data safety, empowering young people to take ownership of their health data, a one-size fits all system may not meet the needs of all families, and early engagement with young people/parents. Discussion Giving families portal access can increase engagement, empowering them to be more involved in care, yet poses challenges for all. Complexities exist in the assessment for portal access, and supporting and managing user expectations whilst providing an equitable service. Conclusions Ongoing support is required for all stakeholders following patient portal implementation to navigate the ethical and legal complexities, and to promote equity and portal utility for patient benefit. (shrink)