Health promotion efforts are commonly directed towards encouraging people to discard ‘unhealthy’ and adopt ‘healthy’ behaviours in order to tackle chronic disease. Typical targets for behaviour change interventions include diet, physical activity, smoking and alcohol consumption, sometimes described as ‘lifestyle behaviours.’ In this paper, I discuss how efforts to raise awareness of the impact of lifestyles on health, in seeking to communicate the need for people to change their behaviour, can contribute to a climate of ‘healthism’ and promote the moralisation (...) of people’s lifestyles. I begin by summarising recent trends in health promotion and introducing the notion of healthism, as described by Robert Crawford in the 1980s. One aspect of healthism is moralisation, which I outline and suggest is facilitated by efforts to promote health via information provision and educational strategies. I propose that perceived responsibility plays a role in mediating the tendency to moralise about health and behaviour. Since I argue that states ought to avoid direct and indirect moralisation of people’s health-related behaviour, this suggests states must be cautious with regard to the use of responsibility-indicating interventions to promote health. (shrink)

Massive amounts of data are collected and stored on a routine basis in virtually all domains of human activities. Such data are potentially useful to biomedicine. Yet, access to data for research purposes is hindered by the fact that different kinds of individual-patient data reside in disparate, unlinked silos. We propose that data cooperatives can promote much needed data aggregation and consequently accelerate research and its clinical translation. Data cooperatives enable direct control over personal data, as well as more democratic (...) governance of data pools. This model can realize a specific kind of data economy whereby citizens and communities are empowered to steer data use according to their motivations, preferences, and concerns. Policy makers can promote this model by recognizing citizens’ rights to access and to obtain a copy of their own data, and by funding distributed data infrastructures piloting new data aggregation models. (shrink)

Virtue ethics is sometimes taken to be incapable of providing guidance for an individual's actions, as some other ethical theories do. I show how virtue ethics does provide guidance for action, and also meet the objection that, while it may account for what we ought to do, it cannot account for the force of duty and obligation.

Personal health technologies such as apps and wearables that generate health and behavior data close to the individual patient are envisioned to enable personalized healthcare - and self-care. And yet, they are consumer devices. Proponents of these devices presuppose that measuring will be helpful, and that data will be meaningful. However, a growing body of research suggests that self-tracking data does not necessarily make sense to users. Drawing together data studies and digital health research, we aim to further research on (...) data ambivalence, a term we use to refer to the ambiguities and uncertainties people experience when interpreting their own data, as well as the critical obligation towards cultivating ethically sound uses and responses to such data in context. We develop the relationship between data, interpretation, and context as a central theoretical and practical problem in the datafication of healthcare. We then show how interpretation and context matter for data ambivalence through an empirical study of heart patients with an implanted advanced pacemaker who were offered a Fitbit wristband for self-tracking as part of a research project. We argue that the hope, anxiety, and doubt connected to the promise and accuracy of data are tempered by the context and purpose of self-tracking, and by individual circumstances. Finally, we link the findings on context-sensitivity in data interpretation to questions about response-ability in cloud-based care infrastructures. We discuss the ethical dilemmas associated with the use of commercial wellness-technologies in healthcare, and with researching such emerging practices. (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)

Self-tracking devices point to a future in which individuals will be more involved in the management of their health and will generate data that will benefit clinical decision making and research. They have thus attracted enthusiasm from medical and public health professionals as key players in the move toward participatory and personalized healthcare. Critics, however, have begun to articulate a number of broader societal and ethical concerns regarding self-tracking, foregrounding their disciplining, and disempowering effects. This paper has two aims: first, (...) to analyze some of the key promises and concerns that inform this polarized debate. I argue that far from being solely about health outcomes, this debate is very much about fundamental values that are at stake in the move toward personalized healthcare, namely, the values of autonomy, solidarity, and authenticity. The second aim is to provide a framework within which an alternative approach to self-tracking for health can be developed. I suggest that a practice-based approach, which studies how values are enacted in specific practices, can open the way for a new set of theoretical questions. In the last part of the paper, I sketch out how this can work by describing various enactments of autonomy, solidarity, and authenticity among self-trackers in the Quantified Self community. These examples show that shifting attention to practices can render visible alternative and sometimes unexpected enactments of values. Insofar as these may challenge both the promises and concerns in the debate on self-tracking for health, they can lay the groundwork for new conceptual interventions in future research. (shrink)

Mobile health (mHealth) apps for self-monitoring increasingly gain relevance for public health. As a mobile technology, they promote individual participation in health monitoring with the aim of disease prevention and the mitigation of health risks. In this paper, I argue that users of mHealth apps must engage in value trade-offs concerning their fundamental dimensions of well-being when using mobile health apps for the self-monitoring of health parameters. I particularly focus on trade-offs regarding the user’s self-determination as well as their capacity (...) to form personal attachments. Depending on the user’s level of advantage or disadvantage, value trade-offs can pose a threat to the users’ sufficient fulfillment of the dimensions of well-being. As such, value trade-offs can entrench existing structural injustices and prevent disadvantaged users to benefit from this technology. I argue that value trade-offs are, to some, a type of injustice that can drive disadvantaged users away from a sufficiency threshold of well-being, risk users to fall below the threshold, or have an accumulative effect on different dimensions of the user’s well-being. (shrink)

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

This article highlights the limitations of the tendency to frame health- and wellbeing-related digital tools (mHealth technologies) as empowering devices, especially as they play an increasingly important role in the National Health Service (NHS) in the UK. It argues that mHealth technologies should instead be framed as digital companions. This shift from empowerment to companionship is advocated by showing the conceptual, ethical, and methodological issues challenging the narrative of empowerment, and by arguing that such challenges, as well as the risk (...) of medical paternalism, can be overcome by focusing on the potential for mHealth tools to mediate the relationship between recipients of clinical advice and givers of clinical advice, in ways that allow for contextual flexibility in the balance between patiency and agency. The article concludes by stressing that reframing the narrative cannot be the only means for avoiding harm caused to the NHS as a healthcare system by the introduction of mHealth tools. Future discussion will be needed on the overarching role of responsible design. (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)

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

This article presents the framework Capability Sensitive Design (CSD), which consists of merging the design methodology Value Sensitive Design (VSD) with Martha Nussbaum's capability theory. CSD aims to normatively assess technology design in general, and technology design for health and wellbeing in particular. Unique to CSD is its ability to account for human diversity and to counter (structural) injustices that manifest in technology design. The basic framework of CSD is demonstrated by applying it to the hypothetical design case of a (...) therapy chatbot for mental health. By applying CSD to a design case, the merits of this new framework over the standard VSD approach become apparent. Also, the application demonstrates what a technology design would look like when attention is paid to capabilities right from the start of the design process. (shrink)