Wearable self-tracking devices capture multidimensional health data and offer several advantages including new ways of facilitating research. However, they also create a conflict between individual interests of avoiding privacy harms, and collective interests of assembling and using large health data sets for public benefits. While some scholars argue for transparency and accountability mechanisms to resolve this conflict, an average user is not adequately equipped to access and process information relating to the consequences of consenting to further uses of her data. (...) As an alternative, this paper argues for fiduciary relationships, which put deliberative demands on digital health data controllers to keep the interests of their data subjects at the forefront as well as cater to the contextual nature of privacy. These deliberative requirements ensure that users can engage in collective participation and share their health data at a lower risk of privacy harms. This paper also proposes a way to balance the flexible and open-ended nature of fiduciary law with the specific nature and scope of fiduciary duties that digital health data controllers should owe to their data subjects. (shrink)

The growth of self-tracking and personal surveillance has given rise to the Quantified Self movement. Members of this movement seek to enhance their personal well-being, productivity, and self-actualization through the tracking and gamification of personal data. The technologies that make this possible can also track and gamify aspects of our interpersonal, romantic relationships. Several authors have begun to challenge the ethical and normative implications of this development. In this article, we build upon this work to provide a detailed ethical analysis (...) of the Quantified Relationship. We identify eight core objections to the QR and subject them to critical scrutiny. We argue that although critics raise legitimate concerns, there are ways in which tracking technologies can be used to support and facilitate good relationships. We thus adopt a stance of cautious openness toward this technology and advocate the development of a research agenda for the positive use of QR technologies. (shrink)

The growth of self-tracking and personal surveillance has given rise to the Quantified Self movement. Members of this movement seek to enhance their personal well-being, productivity, and self-actualization through the tracking and gamification of personal data. The technologies that make this possible can also track and gamify aspects of our interpersonal, romantic relationships. Several authors have begun to challenge the ethical and normative implications of this development. In this article, we build upon this work to provide a detailed ethical analysis (...) of the Quantified Relationship. We identify eight core objections to the QR and subject them to critical scrutiny. We argue that although critics raise legitimate concerns, there are ways in which tracking technologies can be used to support and facilitate good relationships. We thus adopt a stance of cautious openness toward this technology and advocate the development of a research agenda for the positive use of QR technologies. (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)

This article employs Foucauldian and feminist analytics to advance a critical approach to wearable digital health- and activity-tracking devices. Following Foucault’s insight that the growth of individual capabilities coincides with the intensification of power relations, I argue that digital self-tracking devices (DSTDs) expand individuals’ capacity for self-knowledge and self-care at the same time that they facilitate unprecedented levels of biometric surveillance, extend the regulatory mechanisms of both public health and fashion/beauty authorities, and enable increasingly rigorous body projects devoted to the (...) attainment of normative femininity. These technologies of surveillance, normalization, and discipline thus function to augment, and facilitate the cooperation of, neoliberal-era biopower and post-feminist patriarchal power. My analysis of digital self-tracking devices’ instrumentality to biopower and patriarchy contributes to the emergent field of critical digital health studies and builds new connections between political, social, and feminist theories of embodiment; biopower studies; fat studies; and trans-disciplinary body studies. (shrink)

An increasing number of technology firms are implementing processes to identify and evaluate the ethical risks of their systems and products. A key part of these review processes is to foresee potential impacts of these technologies on different groups of users. In this article, we use the expression Ethical Foresight Analysis to refer to a variety of analytical strategies for anticipating or predicting the ethical issues that new technological artefacts, services, and applications may raise. This article examines several existing EFA (...) methodologies currently in use. It identifies the purposes of ethical foresight, the kinds of methods that current methodologies employ, and the strengths and weaknesses of each of these current approaches. The conclusion is that a new kind of foresight analysis on the ethics of emerging technologies is both feasible and urgently needed. (shrink)

Abstract In this essay, a new approach for the ethical study of emerging technology ethics will be presented, called anticipatory technology ethics (ATE). The ethics of emerging technology is the study of ethical issues at the R&D and introduction stage of technology development through anticipation of possible future devices, applications, and social consequences. I will argue that a major problem for its development is the problem of uncertainty, which can only be overcome through methodologically sound forecasting and futures studies. I (...) will then consider three contemporary approaches to the ethics of emerging technologies that use forecasting: ethical technology assessment, the techno-ethical scenarios approach and the ETICA approach, and I considered their strengths and weaknesses. Based on this critical study, I then present my own approach: ATE. ATE is a conceptually and methodologically rich approach for the ethical analysis of emerging technologies that incorporates a large variety of ethical principles, issues, objects and levels of analysis, and research aims. It is ready to be applied to contemporary and future emerging technologies. Content Type Journal Article Category Original Paper Pages 1-13 DOI 10.1007/s11569-012-0141-7 Authors Philip A. E. Brey, Department of Philosophy, School of Behavioral Sciences, University of Twente, P.O. Box 217, 7500 AE Enschede, The Netherlands Journal NanoEthics Online ISSN 1871-4765 Print ISSN 1871-4757. (shrink)

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

This paper critically engages with new self-tracking technologies. In particular, it focuses on a conceptual tension between the idea that disclosing personal information increases one’s autonomy and the idea that informational privacy is a condition for autonomous personhood. I argue that while self-tracking may sometimes prove to be an adequate method to shed light on particular aspects of oneself and can be used to strengthen one’s autonomy, self-tracking technologies often cancel out these benefits by exposing too much about oneself to (...) an unspecified audience, thus undermining the informational privacy boundaries necessary for living an autonomous life. (shrink)

There are many ethical decisions in the practice of health research and care, and in the creation of policy and guidelines. We argue that those charged with making such decisions need a new genre of review. The new genre is an application of the systematic review, which was developed over decades to inform medical decision-makers about what the totality of studies that investigate links between smoking and cancer, for example, implies about whether smoking causes cancer. We argue that there is (...) a need for similarly inclusive and rigorous reviews of reason-based bioethics, which uses reasoning to address ethical questions. After presenting a brief history of the systematic review, we reject the only existing model for writing a systematic review of reason-based bioethics, which holds that such a review should address an ethical question. We argue that such a systematic review may mislead decision-makers when a literature is incomplete, or when there are mutually incompatible but individually reasonable answers to the ethical question. Furthermore, such a review can be written without identifying all the reasons given when the ethical questions are discussed, their alleged implications for the ethical question, and the attitudes taken to the reasons. The reviews we propose address instead the empirical question of which reasons have been given when addressing a specified ethical question, and present such detailed information on the reasons. We argue that this information is likely to improve decision-making, both directly and indirectly, and also the academic literature. We explain the limitations of our alternative model for systematic reviews. (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 paper explores and rehabilitates the value of decisional privacy as a conceptual tool, complementary to informational privacy, for critiquing personalized choice architectures employed by self-tracking technologies. Self-tracking technologies are promoted and used as a means to self-improvement. Based on large aggregates of personal data and the data of other users, self-tracking technologies offer personalized feedback that nudges the user into behavioral change. The real-time personalization of choice architectures requires continuous surveillance and is a very powerful technology, recently coined as (...) “hypernudging.” While users celebrate the increased personalization of their coaching devices, “hypernudging” technologies raise concerns about manipulation. This paper addresses that intuition by claiming that decisional privacy is at stake. It thus counters the trend to solely focus on informational privacy when evaluating information and communication technologies. It proposes that decisional privacy and informational privacy are often part of a mutually reinforcing dynamic. Hypernudging is used as a key example to illustrate that the two dimensions should not be treated separately. Hypernudging self-tracking technologies compromise autonomy because they violate informational and decisional privacy. In order to effectively judge whether technologies that use hypernudges empower users, we need both privacy dimensions as conceptual tools. (shrink)

In a lifelog, data from various sources are combined to form a record from which one can retrieve information about oneself and the environment in which one is situated. It could be considered similar to an automated biography. Lifelog technology is still at an early stage of development. However, the history of lifelogs so far shows a clear academic, corporate and governmental interest. Therefore, a thorough inquiry into the ethical aspects of lifelogs could prove beneficial to the responsible development of (...) this field. This article maps the main ethically relevant challenges and opportunities associated with the further development of lifelog technologies as discussed in the scholarly literature. By identifying challenges and opportunities in the current debate, we were able to identify other challenges and opportunities left unmentioned. Some of these challenges are partly explained by a blind spot in the current debate. Whilst the current debate focuses mainly on lifelogs held by individuals, lifelogs held by governmental institutions and corporations pose idiosyncratic ethical concerns as well. We have provided a brief taxonomy of lifelog technology to show the variety in uses for lifelogs. In addition, we provided a general approach to alleviate the ethical challenges identified in the critical analysis. (shrink)

Paul Virilio passed away on the 10th of September 2018. This article surveys his considerable legacy to cultural theory in order to locate a largely dormant contribution to questions of moral respo...

Purpose This paper aims to fill this gap by providing a conceptual framework for discussing “technologies of the self and other,” by showing that, in most cases, self-tracking also involves other-tracking. Design/methodology/approach In so doing, we draw upon Foucault’s “technologies of the self” and present-day literature on self-tracking technologies. We elaborate on two cases and practical domains to illustrate and discuss this mutual process: first, the quantified workplace; and second, quantification by wearables in a non-clinical and self-initiated context. Findings The (...) main conclusion is that these shapings are never neutral and have ethical implications, such as regarding “quantified otherness,” a notion we propose to point at the risk that the other could become an object of examination and competition. Originality/value Although there is ample literature on the quantified self, considerably less attention is given to how the relation with the other is being shaped by self-tracking technologies that allow data sharing. (shrink)

In an increasingly technology-textured environment, smart, intelligent and responsive technology has moved onto the body of many individuals. Mobile phones, smart watches and wearable activity trackers are just some of the technologies that are guiding, nudging, monitoring and reminding individuals in their day-to-day lives. These devices are designed to enhance and support their human users, however, there is a lack of attention to the unintended consequences, the technology non-neutrality and the darker sides of becoming human-tech hybrids. Using the extended mind (...) theory and agential intra-action, we aim at exploring how human-technology hybrids gain collective skills and how these are put to use; how agency is expressed and how this affects the interactions; and what the darker sides are of being a human-technology hybrid. Using a qualitative method, we analyze the experiences of using a wearable activity tracker, with a specific focus on how the tracker and the individual solve tasks, share competences, develop new skills and negotiate for agency and autonomy. We contribute with new insight on human-tech hybridity and present a concept referred to as the agency pendulum, reflecting the dynamism of agency. Finally, we demonstrate how the extended mind theory and agential intra-action as a combined theoretical lens can be used to explore human-tech hybridity. (shrink)

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)