It is a dominant dictum in ethics that ‘ought implies can’ (OIC): if an agent morally ought to do an action, the agent must be capable of performing that action. Yet, with current technological developments, such as in direct-to-consumer genomics, big data analytics and wearable technologies, there may be reasons to reorient this ethical principle. It is our modest aim in this article to explore how the current wave of allegedly disruptive innovation calls for a renewed interest for this dictum. (...) As an effect of prevention and prediction oriented technological innovation, an increased focus on assumedly controllable lifestyle risks may be anticipated. For lay people who might turn into patients, this may entail a reinforced behavior-based individual responsibilisation. Holding on to the OIC dictum, such responsibilisation seems to require that individuals can actually control what is framed as ‘lifestyle risks’ when there is not always a reliable consensus about what one should do. As such, reference to OIC may be mobilised in function of a political task of designing institutions so as to enable such choice and control. (shrink)

In this paper, I introduce a “promises and perils” framework for understanding the “soft” impacts of emerging technology, and argue for a eudaimonic conception of well-being. This eudaimonic conception of well-being, however, presupposes that we have something like stable character traits. I therefore defend this view from the “situationist challenge” and show that instead of viewing this challenge as a threat to well-being, we can incorporate it into how we think about living well with technology. Human beings are susceptible to (...) situational influences and are often unaware of the ways that their social and technological environment influence not only their ability to do well, but even their ability to know whether they are doing well. Any theory that attempts to describe what it means for us to be doing well, then, needs to take these contextual features into account and bake them into a theory of human flourishing. By paying careful attention to these contextual factors, we can design systems that promote human flourishing. (shrink)

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)

This article examines the gamification of health applications designed to help patients manage chronic pain. Through description of one such program and in-depth interviewing, I describe why gamified pain applications are appealing to patients living with chronic pain. Individuals living with chronic pain are especially disposed to try novel pain management technologies due to the in-control and out-of-control paradox of pain (Leder, 2016). These applications are seductive not only due to this embodied phenomenon, but also because gamification taps into the (...) logic of proactive self-management that is tantamount to an era of biomedicalization, wherein subjects are incentivized to take control of their own health in the face of austerity budgets. However, pain also limits the user’s ability to adopt an immersive, lusory attitude. Thus, the speculative promises of gamified health technologies are just that – speculative, and their immersive potential should not be overstated. (shrink)

Recommender systems assist users in receiving preferred or relevant services and information. Using such technology could be instrumental in addressing the lack of relevance digital mental health apps have to the user, a leading cause of low engagement. However, the use of recommender systems for digital mental health apps, particularly those driven by personal data and artificial intelligence, presents a range of ethical considerations. This paper focuses on considerations particular to the juncture of recommender systems and digital mental health technologies. (...) While separate bodies of work have focused on these two areas, to our knowledge, the intersection presented in this paper has not yet been examined. This paper identifies and discusses a set of advantages and ethical concerns related to incorporating recommender systems into the digital mental health ecosystem. Advantages of incorporating recommender systems into DMH apps are identified as a reduction in choice overload, improvement to the digital therapeutic alliance, and increased access to personal data & self-management. Ethical challenges identified are lack of explainability, complexities pertaining to the privacy/personalization trade-off and recommendation quality, and the control of app usage history data. These novel considerations will provide a greater understanding of how DMH apps can effectively and ethically implement recommender systems. (shrink)

Against the background of the increasing importance of digitization in health care, the paper examines how medical practitioners who are involved in the development of digital health technologies legitimate and criticize the implementation and use of digital health technologies. Adopting an institutional logics perspective, the study is based on qualitative interviews with persons working at the interface of medicine and digital technologies development in Switzerland. The findings indicate that the developers believe that digital health technologies could harmonize current conflicts between (...) an increasing economization of the health care system and professional–ethical demands. At the same time, however, they show that digital technologies can undermine the demand for medical autonomy, a central element of the medical ethos. (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)

Digital hyperconnectivity is a defining fact of our time. In addition to recasting social interaction, culture, economics, and politics, it has profoundly transformed the self. It has created new ways of being and constructing a self, but also new ways of being constructed as a self from the outside, new ways of being configured, represented, and governed as a self by sociotechnical systems. Rather than analyze theories of the self, I focus on practices of the self, using this expression in (...) a looser, more general sense than that used by Foucault. I begin by considering and reformulating two early lines of argument about the web as a medium for exploring and emancipating the self. Subsequent sections show how digital hyperconnectivity has engendered new ways of objectifying, quantifying, producing, and regulating the self—considered both as active, reflexive practices and as systemic, data- and algorithm-driven processes. I conclude by reflecting on the broader implications of contemporary modes of governing the self and by underscoring the ways in which hyperconnectivity has colonized the territories of the self, conscripting the self into the service of techno-social systems. (shrink)

This paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between the good and the right, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of the good. Enacting solidarity drives progress in research and clinical practice. At the same time, such acts of sharing could—especially considering current developments in big data and artificial intelligence—compromise the right by leading to injustices and (...) affecting concrete modes of individual self-determination. In order to address this potential tension, two key elements for ethical reflection on data-driven medicine are proposed: the controllability of information flows, including technical infrastructures that are conducive towards controllability, and a paradigm shift towards output-orientation in governance and policy. (shrink)

Mobile health is rapidly being implemented and changing our ways of doing, understanding and organising healthcare. mHealth includes wearable devices as well as apps that track fitness, offer wellness programmes or provide tools to manage chronic conditions. According to industry and policy makers, these systems offer efficient and cost-effective solutions for disease prevention and self-management. While this development raises many ethically relevant questions, so far mHealth has received only little attention in medical ethics. This paper provides an overview of bioethical (...) issues raised by mHealth and aims to draw scholarly attention to the ethical significance of its promises and challenges. We show that the overly positive promises of mHealth need to be nuanced and their desirability critically assessed. Finally, we offer suggestions to bioethicists to engage with this emerging trend in healthcare to develop mHealth to its best potential in a morally sound way. (shrink)

Telemedicine is a complex field including various applications and target groups. Especially telehealthcare is seen by many as a means to revolutionize medicine. It gives patients the opportunity to take charge of their own health by using self-tracking devices and allows health professionals to treat patients from a distance. To some, this means an empowerment of patient autonomy as well as an improvement in the quality of care. Others state the dangers of depersonalization of medicine and the pathologization of daily (...) life. This paper examines the ethical implications of telehealthcare, focusing on patient autonomy and quality of care by analyzing metareviews, randomized controlled trials and narrative ethical analyses on the topic. As a result, we conclude that the technically enhanced encounter between patients and health professionals may mean an empowerment of patient autonomy when it goes along with a personal relationship based on trust, assistance and support. When it comes to the quality of care, telehealthcare may lead to an improvement as long it is adopted to the patient’s individual needs. (shrink)

In this article, we address the case of self-tracking as a practice in which two meaningful backgrounds (physical world and technological infrastructure) play an important role as the spatial dimension of human practices. Using a (post)phenomenological approach, we show how quantification multiplies backgrounds, while at the same time generating data about the user. As a result, we can no longer speak of a unified background of human activity, but of multiple dimensions of this background, which, additionally, is perceived as having (...) no pivotal role in the process, often being hidden, situated beyond human consciousness, or taken for granted. Consequently, the phenomenological experience of the background turns into a hermeneutic practice focused on the interpretation of representations and descriptions. By adopting a (post)phenomenological approach, we show the problems and limitations of quantification of human activities occurring in self-tracking and the theoretical problems associated with the scheme of human-technology relations. (shrink)

Neuroadaptive technology (NAT) is a closed-loop neurotechnology designed to enhance human–computer interaction. NAT works by collecting neurophysiological data, which are analysed via autonomous algorithms to create actions and adaptations at the user interface. This paper concerns how interaction with NAT can mediate self-related processing (SRP), such as self-awareness, self-knowledge, and agency. We begin with a postphenomenological analysis of the NAT closed loop to highlight the built-in selectivities of machine hermeneutics, i.e., autonomous chains of algorithms that convert data into an assessment (...) of psychological states/intentions. We argue that these algorithms produce an assessment of lived experience that is quantitative, reductive, and highly simplistic. This reductive assessment of lived experience is presented to the user via feedback at the NAT interface and subsequently mediates SRP. It is argued that congruence between system feedback and SRP determines the precise character of the alterity relation between human user and system. If feedback confirms SRP, the technology is regarded as a quasi-self. If there is a disagreement between SRP and feedback from the system, NAT is perceived to be a quasi-other. We argue that the design of the user interface shapes the precise ways in which NAT can mediate SRP. (shrink)

Consumer-targeted sleep tracking applications (STA) that run on mobile devices (e.g., smartphones) promise to be useful tools for the individual user. Assisted by built-in and/or external sensors, these apps can analyze sleep data and generate assessment reports for the user on their sleep duration and quality. However, STA also raise ethical questions, for example, on the autonomy of the sleeping person, or potential effects on third parties. Nevertheless, a specific ethical analysis of the use of these technologies is still missing (...) so far. The aim of the current analysis is to identify the characteristics of sleep tracking apps and to explore the specific ethical aspects associated with this form of self-tracking. Firstly, the field of mobile health applications was screened for STA to explore their typical functions and target user groups. Secondly, an ethical analysis was conducted focusing on the three ethical dimensions: (1) medicalization, (2) vulnerability, and (3) relationality. The analysis indicates that these three normative dimensions are decisive for assessing STA and that the ethical profile of this technology varies greatly depending on the respective user group. As the three dimensions medicalization, vulnerability, and relationality play a distinguishing role in the use of STA, they should be especially addressed in responsible development and implementation of STA. In addition, the analysis helps to evaluate the use of STA, in terms of different risks for specific user groups, the sensitive contexts of usage, and potential interference with the intimacy of third parties. (shrink)

Some claim that digital phenotyping will revolutionize understanding of human psychology and experience and significantly promote human wellbeing. This paper investigates the nature of digital phenotyping in relation to its alleged promise. Unlike most of the literature to date on philosophy and digital phenotyping, which has focused on its ethical aspects, this paper focuses on its epistemic and methodological aspects. The paper advances a tetra-taxonomy involving four scenario types in which knowledge may be acquired from human “digitypes” by digital phenotyping. (...) These scenarios comprise two causal relations and a correlative and constitutive relation that can exist between information generated by digital systems/devices on the one hand and psychological or behavioral phenomena on the other. The paper describes several modes of inference involved in deriving knowledge within these scenarios. After this epistemic mapping, the paper analyzes the possible knowledge potential and limitations of digital phenotyping. It finds that digital phenotyping holds promise of delivering insight into conditions and states as well producing potentially new psychological categories. It also argues that care must be taken that digital phenotyping does not make unwarranted conclusions and is aware of potentially distorting effects in digital sensing and measurement. If digital phenotyping is to truly revolutionize knowledge of human life, it must deliver on a range of fronts, including making accurate forecasts and diagnoses of states and behaviors, providing causal explanations of these phenomena, and revealing important constituents of human conditions, psychology, and experience. (shrink)

Technology corporations and the emerging digital health market are exerting increasing influence over the public healthcare agendas forming around the application of mobile medical devices. By promising quick and cost-effective technological solutions to complex healthcare problems, they are attracting the interest of funders, researchers, and policymakers. They are also shaping the public facing discourse, advancing an overwhelmingly positive narrative predicting the benefits of wearable medical devices to include personalised medicine, improved efficiency and quality of care, the empowering of under-resourced communities, (...) and delivery of health services previously unavailable to the citizens of developing countries. Typically techno-optimist in their description, the key barriers to this impending inflection point in healthcare are identified as technical issues such as short battery life and a lack of data protection. However, this tech innovation narrative is consistent with problematic ethical, social, and political assumptions that have practical and normative effects, and risk, one, undermining the real clinical potential of wearable devices and, two, designing social inequality and injustice into our mobile health interventions in global healthcare. I argue that the foundational assumptions dealing with the just distribution of healthcare ‘goods’, the individual as part of society, and the political framing of future healthcare policy devalue equity and despite what they promise cannot meet the distinctive needs of individuals and groups that do not conform to a standardised concept of care-receiver. (shrink)

There is an ongoing increase in the use of mobile health technologies that patients can use to monitor health-related outcomes and behaviours. While the dominant narrative around mHealth focuses on patient empowerment, there is potential for mHealth to fit into a growing push for patients to take personal responsibility for their health. I call the first of these uses ‘medical monitoring’, and the second ‘personal health surveillance’. After outlining two problems which the use of mHealth might seem to enable us (...) to overcome—fairness of burdens and reliance on self-reporting—I note that these problems would only really be solved by unacceptably comprehensive forms of personal health surveillance which applies to all of us at all times. A more plausible model is to use personal health surveillance as a last resort for patients who would otherwise independently qualify for responsibility-based penalties. However, I note that there are still a number of ethical and practical problems that such a policy would need to overcome. The prospects of mHealth enabling a fair, genuinely cost-saving policy of patient responsibility are slim. (shrink)

Societies evolve practices that reflect social norms of appropriateness in social interaction, for example when and to what extent one should respect the boundaries of another person’s private sphere. One such practice is what the sociologist Erving Goffman called civil inattention—the social norm of showing a proper amount of indifference to others—which functions as an almost unnoticed yet highly potent privacy-preserving mechanism. These practices can be disrupted by technologies that afford new forms of intrusions. In this paper, we show how (...) new networked technologies, such as facial recognition, challenge our ability to practice civil inattention. We argue for the need to revitalise, in academic and policy debates, the role of civil inattention and related practices in regulating behaviour in public space. Our analysis highlights the relational nature of privacy and the importance of social norms in accomplishing and preserving it. While our analysis goes some way in supporting current calls to ban FR technology, we also suggest that, pending a ban and in light of the power of norms to limit what is otherwise technically possible, cultivating new practices of civil inattention may help address the challenges raised by FR and other forms of digital surveillance in public. (shrink)

Data activism, promoting new forms of civic and political engagement, has emerged as a response to problematic aspects of datafication that include tensions between data openness and data ownership, and asymmetries in terms of data usage and distribution. In this article, we discuss MyData, a data activism initiative originating in Finland, which aims to shape a more sustainable citizen-centric data economy by means of increasing individuals' control of their personal data. Using data gathered during long-term participant-observation in collaborative projects with (...) data activists, we explore the internal tensions of data activism by first outlining two different social imaginaries – technological and socio-critical – within MyData, and then merging them to open practical and analytical space for engaging with the socio-technical futures currently in the making. While the technological imaginary favours data infrastructures as corrective measures, the socio-critical imaginary questions the effectiveness of technological correction. Unpacking them clarifies the kinds of political and social alternatives that different social imaginaries ascribe to the notions underlying data activism, and highlights the need to consider the social structures in play. The more far-reaching goal of our exercise is to provide practical and analytical resources for critical engagement in the context of data activism. By merging technological and socio-critical imaginaries in the work of reimagining governing structures and knowledge practices alongside infrastructural arrangements, scholars can depart from the most obvious forms of critique, influence data activism practice, and formulate data ethics and data futures. (shrink)

Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, (...) knowledge, and capacity, and reducing hazard. (shrink)

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)

Responding to Danaher et al. on self-tracking technologies, I argue that human lived experience is becoming increasingly mediated by generalized, statistical information, which I term our "infotality." Drawing on the work of Foucault, I argue that infotality is historically novel and best understood as the product of biopolitics, healthism, and informatics. I then critique the authors' "stance of cautious openness,” which misunderstands the aims of the technology in question and the fundamental ambiguity of the role information plays in the achievement (...) of human wellbeing. Self-tracking technologies are not primarily designed to change behavior; they are designed to create and sustain the desire for their use. I conclude by suggesting that infotality names a new way to fall for an old ruse: the promise that more information means more wellbeing. (shrink)

This paper articulates dignity as relational engagement in concrete care situations. Dignity is often understood as an abstract principle that represents inherent worth of all human beings. In actual care practices, this principle has to be substantiated in order to gain meaning and inform care activities. We describe three exemplary substantiations of the principle of dignity in care: as a state or characteristic of a situation; as a way to differentiate between socio-cultural positions; or as personal meaning. We continue our (...) analysis by presenting cases on dignity in care related to us in focus groups with medical professionals. Our empirical ethical lens is in this paper is to analyse, not the meaning of dignity, but the way in which it emerges in practices where it is pursued, within relationships between people, technologies, places, regulations, and the values cherished by or embedded in them. We show that professional caregivers recognize in the dignity of the person they care for their own dignity; giving up on the one implies no less than giving up on the other. This ‘mirrored experience’ of dignity expresses itself in professional’s engagement with the situation. The value of this engagement, we argue, lies not primarily in realizing the particular content of the values at stake. We point to the importance of engagement itself, even if the values engaged with cannot be realized to the full, and even if competing versions of dignity are at stake simultaneously. In this way the caregivers provide us with interesting examples of moral actorship in situations of conflicting values. (shrink)

Recent publications on digital health technologies highlight the importance of ‘responsible’ use. References to the concept of responsibility are, however, frequently made without providing clear definitions of responsibility, thus leaving room for ambiguities. Addressing these uncertainties is critical since they might lead to misunderstandings, impacting the quality and safety of healthcare delivery. Therefore, this study investigates how responsibility is interpreted in the context of using digital health technologies, including artificial intelligence (AI), telemonitoring, wearables and mobile apps. We conducted a scoping (...) review with a systematic search in PubMed, Web of Science, Embase, CINAHL and Philosopher’s Index. A total of 34 articles were included and categorized using a theoretical framework of responsibility aspects, and revealed two main findings. First, we found that digital health technologies can expand and shift existing ‘role responsibilities’ among caregivers, patients and technology. Second, moral responsibility is often equated with liability or accountability, without clear justification. Articles describe new ways in which physicians can be held accountable, particularly in the context of AI, and discuss the emergence of a ‘responsibility gap’ where no-one can be fully responsible for AI-generated outcomes. The literature also shows that m-Health technologies can increase patients’ accountability for their own health. However, there was limited discussion in the reviewed literature on whether these attributions of accountability are appropriate. We conclude with implications for practice and suggestions for expanding the theoretical framework of moral responsibility, recommending further study on responsibility of collectives and artificial entities, and on the role of virtue in digital health. (shrink)

In this article, I apply the concept of solidarity to collective knowledge practices in healthcare. Generally, solidarity acknowledges that people are dependent on each other in many respects, and it captures those support practices that people engage in out of concern for others in whom they recognise a relevant similarity. Drawing on the rich literature on solidarity in bioethics and beyond, this article specifically discusses the role that epistemic solidarity can play in healthcare. It thus focuses, in particular, on solidarity’s (...) relationship with justice and injustice. In this regard, it is argued (1) that justice and solidarity are two equally important and complementary values that should both be considered in healthcare practices and institutions and (2) that solidarity often arises in unjust situations and can be a means to bring about justice. I transfer these ‘general’ insights about solidarity to knowledge practices in healthcare and link them to the discussion about epistemic injustices in healthcare and how to overcome them. I argue that epistemic solidarity can play an important role in overcoming epistemic injustices as well as—and independently from its contribution to justice—in knowledge production in medicine more generally. To demonstrate how epistemic solidarity can add to our understanding of collective knowledge practices, I discuss two examples: patients sharing their medical data for research purposes and healthcare professionals’ engagement with patients to better understand their afflictions. (shrink)

Ethical issues concerning brain–computer interfaces have already received a considerable amount of attention. However, one particular form of BCI has not received the attention that it deserves: Affective BCIs that allow for the detection and stimulation of affective states. This paper brings the ethical issues of affective BCIs in sharper focus. The paper briefly reviews recent applications of affective BCIs and considers ethical issues that arise from these applications. Ethical issues that affective BCIs share with other neurotechnologies are presented and (...) ethical concerns that are specific to affective BCIs are identified and discussed. (shrink)

Mobile health (mHealth) technologies for self-monitoring health-relevant parameters such as heart frequency, sleeping patterns or exercise regimes aim at fostering healthy behavior change and increasing the individual users to promote and maintain their health. We argue that this aspect of mHealth supports healthism, the increasing shift from institutional responsibility for public health toward individual engagement in maintaining health as well as mitigating health risks. Moreover, this healthist paradigm leads to a shift from understanding health as the absence of illness to (...) regarding health as the performance of certain rituals in order to project healthiness. By drawing from the analogy between healthiness and traditional virtues, we evaluate the promises made by proponents of mHealth technologies for self-monitoring. We argue that the implementation and use of mHealth risk entrenching existing inequalities and, more particularly, tend to exclude populations situated at the losing end of those inequalities from participating in the quasi-virtue of healthiness. Consequently, the implementation and use of mHealth technologies not only present challenges for social justice but also undermine their primary societal goal—to promote public health. Finally, we offer several suggestions on how to realize the potential benefit of mHealth. (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)

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)

Algorithmic systems that provide services to people by supporting or replacing human decision-making promise greater convenience in various areas. The opacity of these applications, however, means that it is not clear how much they truly serve their users. A promising way to address the issue of possible undesired biases consists in giving users control by letting them configure a system and aligning its performance with users’ own preferences. However, as the present paper argues, this form of control over an algorithmic (...) system demands an algorithmic literacy that also entails a certain way of making oneself knowable: users must interrogate their own dispositions and see how these can be formalized such that they can be translated into the algorithmic system. This may, however, extend already existing practices through which people are monitored and probed and means that exerting such control requires users to direct a computational mode of thinking at themselves. (shrink)

Mobile health devices pose novel questions at the intersection of philosophy and technology. Many such applications not only collect sensitive data, but also aim at persuading users to change their lifestyle for the better. A major concern is that persuasion is paternalistic as it intentionally aims at changing the agent’s actions, chipping away at their autonomy. This worry roots in the philosophical conviction that perhaps the most salient feature of living autonomous lives is displayed via agency as opposed to patiency—our (...) lives go well in virtue of what we do, rather than what happens to us. Being persuaded by a device telling us how to conduct our lives seemingly renders the agent passive, an inert recipient of technological commands. This agential bias, however, has led to a marginalization of patiential characteristics that are just as much part of our lives as are agential characteristics. To appreciate the inherent interlocking of acting and being acted upon, it is vital to acknowledge that agency and patiency are correlates, not mutually exclusive opposites. Furthermore, it is unclear whether an action can only count as agential so long as its causes are internal. Drawing on the extended mind and extended will framework, I argue that mHealth applications merely serve as volitional aids to the agent’s internal cognition. Autonomously set goals can be achieved more effectively via technology. To be persuaded by an mHealth device does not mainly—let alone exclusively—emphasize patiency; on the contrary, it can be an effective tool for technologically enhancing agency. (shrink)

Essentialists understand authenticity as an inherent quality of a person, object, artifact, or place, whereas constructionists consider authenticity as a social creation without any pre-given essence, factuality, or reality. In this paper, we move beyond the essentialist-constructionist dichotomy. Rather than focusing on the question whether authenticity can be found or needs to be constructed, we hook into the idea that authenticity is an interactive, culturally informed process of negotiation. In addition to essentialist and constructionist approaches, we discuss a third, less (...) well-known approach that cannot be reduced to any of the two forms. This approach celebrates the authenticity of inauthenticity by amplifying the made. We argue that the value of authenticity lies not in choosing for one of these approaches, but in the degree to which the process of negotiating authenticity enables a critical formation of selves and societies. Authenticity is often invoked as a method of social control or a mark of power relations: once something is defined as authentic, it is no longer questioned. Emerging technologies—especially data-driven technologies—have the capacity to conceal these power relations, propel a shift in power, and dominate authentication processes. This raises the question how processes of authentication can contribute to a critical formation of selves and societies, against the backdrop of emerging technologies. We argue in favor of an interactionist approach of authenticity and discuss the importance of creating space in authentication processes that are increasingly influenced by technology as an invisible actor. (shrink)

In this review, I analyse how ‘behaviour-based personalisation’ in insurance – that is, insurers’ increased interest in tracking and manipulating insureds’ behaviour with, for instance, wearable devices – has been approached in recent social scientific literature. In the review, I focus on two streams of literature, critical data studies and the sociology of insurance, discussing the new insurance schemes that utilise sensor-generated and digital data. The aim of this review is to compare these two approaches and to analyse what kinds (...) of understandings, methodologies and theoretical perspectives they apply to so-called ‘behaviour-based insurance’. The critical data studies literature emphasises the exploitative aspects of these new technologies and mobilises behaviour-based insurance to exemplify the negative outcomes of digital health. Scholars from the field of the sociology of insurance empirically analyse the practices of behavioural-based personalisation and study how regulating and ‘doing’ insurance affect attempts to personalise it. I highlight the importance of approaching insurance as a specific financial technology and argue that more research is needed to understand the practices of developing behaviour-based insurance schemes and the insureds’ experiences. (shrink)

Zunehmend gewinnen Health Apps an Bedeutung für eine präventive und eigenverantwortliche Ausrichtung des Gesundheitssystems. Die meisten dieser digitalen Gesundheitsanwendungen basieren derzeit auf sog. Selftracking-Technologien, mit deren Hilfe physiologische und psychische Daten sensorgestützt aufgezeichnet und diese zumeist um personalisierte Alltagsinformationen ergänzt werden. Die digitalen Entwicklungen dieser Art lösten in den letzten Jahren eine intensive und deutlich polarisierte Debatte über die Chancen und Gefahren von gesundheitlichem Selftracking aus. Ziel dieser Arbeit ist es, nach einem kurzen Überblick über das Feld des medizinischen Selftracking (...) den polarisierten Diskurs zunächst anhand seiner entscheidenden individuellen und gesellschaftlichen Potenziale zu systematisieren und zu prüfen. Es stellt sich heraus, dass Selbstvermessungstechniken keineswegs ein neues Phänomen, sondern vielmehr seit langem fester Bestandteil medizinischen Wirkens in Diagnostik und Therapie sind. Als für die Implementierung von Health Apps in die medizinische Regelversorgung besonders bedeutend wird das Spannungsfeld zwischen individuellem Empowerment und potentiellem Kontrollverlust der Nutzenden herausgestellt. Abschließend werden mögliche Implikationen für die aktuelle Ausgestaltung des neuen Digitale-Versorgung-Gesetzes aufgezeigt und auf einige bestehende „blinde Flecken“ hingewiesen. (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)

This paper analyzes the ethics of social science research employing big data. We begin by highlighting the research gap found on the intersection between big data ethics, SSR and research ethics. We then discuss three aspects of big data SSR which make it warrant special attention from a research ethics angle: the interpretative character of both SSR and big data, complexities of anticipating and managing risks in publication and reuse of big data SSR, and the paucity of regulatory oversight and (...) ethical recommendations on protecting individual subjects as well as societies when conducting big data SSR. Against this backdrop, we propose using David Resnik’s research ethics framework to analyze some of the most pressing ethical issues of big data SSR. Focusing on the principles of honesty, carefulness, openness, efficiency, respect for subjects, and social responsibility, we discuss three clusters of ethical issues: those related to methodological biases and personal prejudices, those connected to risks arising from data availability and reuse, and those leading to individual and social harms. Finally, we advance considerations to observe in developing future ethical guidelines about big data SSR. (shrink)

This paper discusses the interpersonal dimension of self-tracking technologies from the standpoint of Dewey’s pragmatist ethics. Users of self-tracking routinely exchange data with others, interact through social features embedded in their tools, and form communities focused on the sharing and discussion of data. I employ Dewey’s notion of transaction to discuss how self-quantification impacts users’ perception of others and how it mediates interpersonal relations. In Dewey’s ethics engagement with others is a fundamental part of moral life and individual flourishing can (...) only be achieved in social contexts and through the extension of care towards other people. The ethical ideals and epistemic concepts present in pragmatism allow me to argue that despite claims that self-tracking technologies lead to the formation of communities, pro-social instincts exist prior to the adoption of the devices and self-tracking actually inhibits the formation of mutually uplifting social bonds. In my discussion, I focus on the degree of epistemic distance that makes genuine engagement with others difficult, limits to transactional agency that prohibits users from deciding how they are perceived by others, and the reductive and instrumental nature of interactions embedded in the social features of self-tracking technologies. Moreover, I also analyse some political aspects of community-formation in the context of self-quantification and criticise the ownership structures of data and infrastructure that limit communities’ political agency. (shrink)

In this paper, we examine the practice and promises of digital phenotyping. We build on work on the ‘data self’ to focus on a medical domain in which the value and nature of knowledge and relations with data have been played out with particular persistence, that of Alzheimer's disease research. Drawing on research with researchers and developers, we consider the intersection of hopes and concerns related to both digital tools and Alzheimer's disease using the metaphor of the ‘data shadow’. We (...) suggest that as a tool for engaging with the nature of the data self, the shadow is usefully able to capture both the dynamic and distorted nature of data representations, and the unease and concern associated with encounters between individuals or groups and data about them. We then consider what the data shadow ‘is’ in relation to ageing data subjects, and the nature of the representation of the individual's cognitive state and dementia risk that is produced by digital tools. Second, we consider what the data shadow ‘does’, through researchers and practitioners’ discussions of digital phenotyping practices in the dementia field as alternately empowering, enabling and threatening. (shrink)

This paper discusses how John Dewey’s notion of intelligent habit could contribute to technology ethics. For Dewey, intelligent (i.e., desirable) habits are reflective – arising from inquiry into the appropriate courses of action in each situation – and flexible – easily adaptable to the changing circumstances. We should strive to develop intelligent habits as they are the best tools for the achievement of our goals and are necessary for individual and societal flourishing. I argue that Dewey’s notion of intelligent habit (...) makes it possible to identify the impact of technology on users’ identity and self-determination, advocate for the extension of user choice and malleability of technologies, and analyse the connections between the epistemic dimension of technology and users’ ability to flourish. (shrink)

Digital phenotyping represents an avenue of consideration in patients' self-management. This scoping review aims to explore the trends in the body of literature on ethical, legal, and social challenges relevant to the implementation of digital phenotyping technologies in healthcare. The study followed the PRISMA-ScR methodology :467–473, 2018. https://doi.org/10.7326/M18-0850). The review systematically identified relevant literature, characterised the discussed technology, explored its impacts and the proposed solutions to identified challenges. Overall, the literature, perhaps unsurprisingly, concentrates on technical rather than ethical, legal, and (...) social perspectives, which limits understanding of the more complex cultural and social factors in which digital phenotyping technologies are embedded. ELS issues mostly concern privacy, security, consent, lack of regulation, and issues of adoptability, and seldom expand to more complex ethical issues. Trust was chosen as an umbrella theme of a continuum of major ELS and technical issues. Sustained critical analysis of digital phenotyping showed to be sparse and geographically exclusive. There is a continuum and overlap between ELS issues, suggesting the need for a holistic, interdisciplinary approach to each of the challenges posed by the various technologies of digital phenotyping. (shrink)

This article presents the results of a discourse analysis of press coverage on the Quantified Self (QS) movement in the German and British (online) press between 2007 and 2018. The analysis is driven by two questions: What discursive patterns can be discerned within this coverage? And, what characterizes the translation of the experimental practices and imaginaries of this pioneer community into an overall societal reflection of deep mediatization? In essence, the article shows that the QS movement becomes a ‘general signifier’ (...) for a dystopian view of deep mediatization. So, while the QS movement itself understands its practices and community as self-empowering, self-reasoning, and experimental, the constructions of the QS movement in public discourse suggest the opposite. Paradoxically, however, another basic imaginary of the pioneer community is adopted and confirmed, namely that of the (simple) mutability of society as a consequence of digital media technologies. (shrink)

Recent medical innovations like ‘omics’ technologies, mobile health (mHealth) applications or telemedicine are perceived as part of a shift towards a more preventive, participatory and affordable healthcare model. These innovations are often regarded as ‘disruptive technologies’. It is a topic of debate to what extent these technologies may transform the medical enterprise, and relatedly, what this means for medical ethics. The question of whether these developments disrupt established ethical principles like respect for autonomy has indeed received increasing normative attention during (...) the past years. Yet, more fundamental ethical considerations of a possible disruption of the concept of ‘medical necessity’ (and the potential ensuing clinical ramifications) have been limited if not absent. It is our modest – though morally and practically relevant – aim to address this objective in this article, by exploring how the current wave of allegedly disruptive innovation is invoking a resurgence of this concept and related debates on ‘the’ goal(s) of medicine. (shrink)

The phenomenon of the quantified self, which is especially addressed by sociology and medical humanities, is still quite disregarded by philosophy. Yet, the philosophical issues it raises are various and meaningful, from the realm of epistemology to the realm of ethics. Moreover, it may be read as a key symptom to investigate the complex technological era in which we live, starting from the meaning of contemporary technology itself from a philosophical perspective. I shall focus on one of the epistemological issues (...) raised by the phenomenon of the quantified self by arguing that it may be read in terms of epistemological anarchism, which also leads to other epistemological issues, such as a possibly detectable crisis of the notions of knowledge in general and science in particular as founded on the relationship between particularity and universality, as well as between reality and ideality. I shall select cases that are peculiarly representative of the founding epistemological stance I shall focus on. Yet, the reason why they deserve special attention is that they are also representative of an increasingly widespread attitude characterising not only the community of the quantified self but also, at least to some extent, anyone of us who may happen to use technologies to try to self-diagnose. (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)

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)