Recent articles published in this journal have highlighted the shortcomings of individualistic approaches to health promotion, and the potential contributions of relational analyses of autonomy to public health ethics. I argue that the latter helps to elucidate the former, by showing that an inadequate analysis of autonomy leads to misassignment of both forward-looking and backward-looking responsibility for health outcomes. Health promotion programmes predicated on such inadequate analyses are then ineffective, because they assign responsibility to agents whose social environment inhibits their (...) ability to act on such responsibilities; inequitable, because the social barriers to autonomous agency display a socio-economic gradient; and stigmatizing, because they license blaming of individuals for their own poor health without taking into account how reasonable it is to hold these individuals responsible, given the social barriers to autonomy they face. I further sketch how incorporating a relational understanding of autonomy could help to produce health promotion programmes that do not succumb to these difficulties, while avoiding coercive paternalism, exploring potential applications in ecological approaches to health promotion. (shrink)

The success of medicine in the treatment of patients brings with it new challenges. More people live on to suffer from functional, chronic or multifactorial diseases, and this has led to calls for more complex analyses of the causal determinants of health and illness. Philosophical analysis of background assumptions of the current paradigmatic model. While these factors do not require a radical paradigm shift, they do give us cause to develop a new narrative, to add to existing narratives that frame (...) our thinking about medical care. In this paper we argue that the increased focus on lifestyle and shared decision making requires a new narrative of agency, to supplement the narrative of “the patient”. This narrative is conceptually linked to the developing philosophy of person-centred care. If patients are seen also as “agents” this will result in a substantial shift in practical decisions: The development and adoption of this narrative will help practitioners work with patients to their mutual benefit, harnessing the patients’ motivation, shifting the focus from treatment to prevention and preventing unnecessary and harmful treatments that can come out of our preoccupation with the patient narrative. It will also help to shift research efforts, conceptual and empirical, from “treating” and “battling” diseases and their purported “mechanisms” to understanding complex contributing factors and their interplay. (shrink)

BackgroundThe success of medicine in the treatment of patients brings with it new challenges. More people live on to suffer from functional, chronic or multifactorial diseases, and this has led to calls for more complex analyses of the causal determinants of health and illness.MethodsPhilosophical analysis of background assumptions of the current paradigmatic model.ResultsWhile these factors do not require a radical paradigm shift, they do give us cause to develop a new narrative, to add to existing narratives that frame our thinking (...) about medical care. In this paper we argue that the increased focus on lifestyle and shared decision making requires a new narrative of agency, to supplement the narrative of “the patient”. This narrative is conceptually linked to the developing philosophy of person-centred care.ConclusionsIf patients are seen also as “agents” this will result in a substantial shift in practical decisions: The development and adoption of this narrative will help practitioners work with patients to their mutual benefit, harnessing the patients’ motivation, shifting the focus from treatment to prevention and preventing unnecessary and harmful treatments that can come out of our preoccupation with the patient narrative. It will also help to shift research efforts, conceptual and empirical, from “treating” and “battling” diseases and their purported “mechanisms” to understanding complex contributing factors and their interplay. (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)

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)

Precision Medicine has become a common label for data-intensive and patient-driven biomedical research. Its intended future is reflected in endeavours such as the Precision Medicine Initiative in the USA. This article addresses the question whether it is possible to discern a new ‘medical cosmology’ in Precision Medicine, a concept that was developed by Nicholas Jewson to describe comprehensive transformations involving various dimensions of biomedical knowledge and practice, such as vocabularies, the roles of patients and physicians and the conceptualisation of disease. (...) Subsequently, I will elaborate my assessment of the features of Precision Medicine with the help of Michel Foucault, by exploring how precision medicine involves a transformation along three axes: the axis of biomedical knowledge, of biomedical power and of the patient as a self. Patients are encouraged to become the managers of their own health status, while the medical domain is reframed as a data-sharing community, characterised by changing power relationships between providers and patients, producers and consumers. While the emerging Precision Medicine cosmology may surpass existing knowledge frameworks; it obscures previous traditions and reduces research-subjects to mere data. This in turn, means that the individual is both subjected to the neoliberal demand to share personal information, and at the same time has acquired the positive ‘right’ to become a member of the data-sharing community. The subject has to constantly negotiate the meaning of his or her data, which can either enable self-expression, or function as a commanding Superego. (shrink)

The first generation of children to grow up with electronic toys and games saw computers as our “nearest neighbors.” They spoke of computers as rational machines and of people as emotional machines, a fragile formulation destined to be challenged. By the mid-1990s, computational creatures, including robots, were presenting themselves as “relational artifacts,” beings with feelings and needs. One consequence of this development is a crisis in authenticity in many quarters. In an increasing number of situations, people behave as though they (...) no longer place value on living things and authentic emotion. This paper examines watershed moments in the history of human–machine interaction, focusing on the pertinence of relational artifacts to our collective perception of aliveness, life’s purposes, and the implications of relational artifacts for relationships. For now, the exploration of human–robot encounters leads us to questions about the morality of creating believable digital companions that are evocative but not authentic. (shrink)

The first generation of children to grow up with electronic toys and games saw computers as our “nearest neighbors.” They spoke of computers as rational machines and of people as emotional machines, a fragile formulation destined to be challenged. By the mid-1990s, computational creatures, including robots, were presenting themselves as “relational artifacts,” beings with feelings and needs. One consequence of this development is a crisis in authenticity in many quarters. In an increasing number of situations, people behave as though they (...) no longer place value on living things and authentic emotion. This paper examines watershed moments in the history of human–machine interaction, focusing on the pertinence of relational artifacts to our collective perception of aliveness, life’s purposes, and the implications of relational artifacts for relationships. For now, the exploration of human–robot encounters leads us to questions about the morality of creating believable digital companions that are evocative but not authentic. (shrink)

The concept of ‘empowerment’ is used frequently in a number of professional areas, from psychotherapy to social work. But even if the same term is used, it is not always clear if the concept denotes the same goals or the same practice in these various fields. The purpose of this paper is to clarify the discussion and to find a plausible and useful definition of the concept that is suitable for work in various professions. Several suggestions are discussed in the (...) paper, for example control over life or health, autonomy, ability, self-efficacy, self-esteem, and freedom, and it is concluded that there are two plausible complementary uses, one as a goal and one as a process or approach. Empowerment as a goal is to have control over the determinants of one’s quality of life, and empowerment as a process is to create a professional relation where the client or community takes control over the change process, determining both the goals of this process and the means to use. (shrink)

Empowerment is a concept that has been much used and discussed for a number of years. However, it is not always explicitly clarified what its central meaning is. The present paper intends to clarify what empowerment means, and relate it to the goals of health promotion. The paper starts with the claim that health-related quality of life is the ultimate general goal for health promotion, and continues by briefly presenting definitions of some central concepts: “welfare” “health” and “quality of life”. (...) Several suggestions as to what empowerment is are then discussed: autonomy, freedom, knowledge, self-esteem, self-confidence, and control over health or life. One conclusion of this discussion is that empowerment can be seen as a complex goal which includes aspects of the three central concepts welfare, health and quality of life. To the extent that the empowerment goals aimed at are health-related, it is concluded that empowerment is a legitimate goal for health promotion. But empowerment is not only a goal, it can also be described as a process or as an approach. This process, or approach, in a fundamental way involves the participants in problem formulation, decision making and action, which means that the experts have to relinquish some of their control and power. (shrink)

There are several strategies to promote health in individuals and populations. Two general approaches to health promotion are behavior change and empowerment. The aim of this article is to present those two kinds of strategies, and show that the behavior-change approach has some moral problems, problems that the empowerment approach (on the whole) is better at handling. Two distinct ‘ideal types’ of these practices are presented and scrutinized. Behavior change interventions use various kinds of theories to target people’s behavior, which (...) they do through information, persuasion, coercion and manipulation. Empowerment is a collaborative method where those ‘facilitated’ participate in the change process. Some ethical problems with the behavior-change model are that it does not sufficiently respect the right to autonomy of the individuals involved and risks reducing their ability for autonomy, and that it risks increasing health inequalities. Empowerment, on the other hand, respects the participant’s right to autonomy, tends to increase the ability for autonomy, as well as increasing other coping skills, and is likely to reduce inequalities. A drawback with this approach is that it often takes longer to realize. (shrink)

This paper explores a novel philosophy of ethical care in the face of burgeoning biomedical technologies. I respond to a serious challenge facing traditional bioethics with its roots in analytic philosophy. The hallmarks of these traditional approaches are reason and autonomy, founded on a belief in the liberal humanist subject. In recent years, however, there have been mounting challenges to this view of human subjectivity, emerging from poststructuralist critiques, such as Michel Foucault's, but increasingly also as a result of advances (...) in biotechnology itself. In the face of these developments, I argue that the theoretical relevance and practical application of mainstream bioethics is increasingly under strain. Traditionalists will undoubtedly resist. Together, professional philosopher-bioethicists, public health policymakers, and the global commercial healthcare industry tend to respond conservatively by shoring up the liberal humanist subject as the foundation for medical ethics and consumer decision-making, appealing to the familiar tropes of reason, autonomy, and freedom. (shrink)

Ubiquitous computing technologies will have a wide impact on our daily lives in the future. Currently, most debates about social implications of these technologies concentrate on different aspects of privacy and data security. However, the authors of this paper argue that there is more to consider from a social perspective: In particular, the question is raised how people can maintain control in environments that are supposed to be totally automated. Hinting at the possibility that people may be subdued to machines’ (...) autonomous actions we introduce the term Technology Paternalism . We elaborate a working definition and illustrate the concept by looking at different examples based on current and future technology. We also dwell on the impacts of ubiquity and control of technology and suggest some approaches to assure a reasonable balance of interests such as a general right for the last word. (shrink)

Patient choice, we might think, is the popular version of the ideas of informed consent and the principle of respect for autonomy and intimately connected to the politics of liberal individualism. There are various accounts to be given for why patient choice, in all its forms, has dominated thinking in bioethics and popular culture. All of them, I suggest, will make reference to the decline of paternalism. The bad old days of ‘doctor knows best’ are gone and were replaced by (...) the primacy of patient choice and informed consent.The response to the dominance of the principle of patient choice has been slow in building but it has come in a number of ways. Two sets of papers in this issue of the Journal of Medical Ethics show just how far this response has come and the degree to which the pendulum is swinging back in the other direction. Neil Levy's Feature article, ‘Forced to be free? Increasing patient autonomy by constraining it’, argues that we should go to greater lengths to correct patients' mistaken decisions . In the ‘Author meets critics’ section, Sarah Conly's book, Against Autonomy: Justifying Coercive Paternalism is the focus of comment . Both authors draw on a similar range of empirical evidence to undermine the sanctity of patient and individual choice. An array of commentators draw on these target pieces to give a clear picture of the ways in which the popular view can justifiably be undermined.Levy's paper focuses on the process of informed consent in clinical contexts. He argues that, while this process is crucially important, it systematically fails because of well-documented frailties of human reason. The evidence of these frailties comes from cognitive and social psychology, on biases and heuristics. The key question is how …. (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)

The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient’s relatives who, (...) without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be “activated” by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons. (shrink)

Recent rapid advances in Artificial Intelligence and Machine Learning have raised many questions about the regulatory and governance mechanisms for autonomous machines. Many commentators, scholars, and policy-makers now call for ensuring that algorithms governing our lives are transparent, fair, and accountable. Here, I propose a conceptual framework for the regulation of AI and algorithmic systems. I argue that we need tools to program, debug and maintain an algorithmic social contract, a pact between various human stakeholders, mediated by machines. To achieve (...) this, we can adapt the concept of human-in-the-loop from the fields of modeling and simulation, and interactive machine learning. In particular, I propose an agenda I call society-in-the-loop, which combines the HITL control paradigm with mechanisms for negotiating the values of various stakeholders affected by AI systems, and monitoring compliance with the agreement. In short, ‘SITL = HITL + Social Contract.’. (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)

Technology and its interfaces with nursing care, patients and carers, and the home are many and varied. To date, healthcare services research has generally focussed on pragmatic issues such access to and the optimization of technology, while philosophical inquiry has tended to focus on the ethics of how technology makes the home more hospital like. However, the ethical implications of the ways in which technology shapes the subjectivities of patients and carers have not been explored. In order to explore this, (...) poststructural theory, in particular the work of Butler, Foucault, and Deleuze, is used to theorize the relationship between subjectivity and materiality as ethically mandated on producing rather than precluding the development of subjectivities in novel ways. This theoretical understanding is then utilized through a process of ‘plugged in’ as described by Jackson and Massie that aims to link empirical data, research, and philosophical inquiry. Through this process, it is suggested that power, which the empirical data demonstrate, is frequently exercised through medical discourses and restricts patients' and carers' ability to shape the material environment of the home as a place to live and be cared for in palliative stages of illness. Alternative discourses are suggested both from the empirical data as well as other research, which may offer patients and carers the possibility of reclaiming power over the home and their subjectivities. Finally, the dichotomy between the home and hospital, mediated via technology, is posited as being problematic. It is argued the dichotomy is false and should be moved away from in order to allow an ethical embrace of technology in palliative care. (shrink)

Information and computer technology has come to play an increasingly important role in medicine, to the extent that e-health has been described as a disruptive innovation or revolution in healthcare. The attention is very much focused on the technology itself, and advances that have been made in genetics and biology. This leads to the question: What is changing in medicine today concerning e-health? To what degree could these changes be characterized as a ‘revolution’? We will apply the work of Thomas (...) Kuhn, Larry Laudan, Michel Foucault and other philosophers—which offers an alternative understanding of progress and revolution in medicine to the classic discovery-oriented approach—to our analysis. Nowadays, the long-standing curative or reactive paradigm in medicine is facing a crisis due to an aging population, a significant increase in chronic diseases and the development of more expensive diagnostic tools and therapies. This promotes the evolution towards a new paradigm with an emphasis on preventive medicine. E-health constitutes an essential part of this new paradigm that seeks to solve the challenges presented by an aging population, skyrocketing costs and so forth. Our approach changes the focus from the technology itself toward the underlying paradigm shift in medicine. We will discuss the relevance of this approach by applying it to the surge in digital self-tracking through health apps and wearables: the recognition of the underlying paradigm shift leads to a more comprehensive understanding of self-tracking than a solely discovery-oriented or technology-focused view can provide. (shrink)

The contention that paternalism can be modernised in such a way as to avoid the usual criticisms is examined and dismissed. The alleged 'modernisation' consists simply in going through the motions of achieving the patient's free consent, while leaving the ultimate decision to the physician. Paternalism in this form is no better than the more old-fashioned variety, since it still takes away from patients the fundamental human right to make decisions about their own fate.

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)

The concept of the digital phenotype has been used to refer to digital data prognostic or diagnostic of disease conditions. Medical conditions may be inferred from the time pattern in an insomniac’s tweets, the Facebook posts of a depressed individual, or the web searches of a hypochondriac. This paper conceptualizes digital data as an extended phenotype of humans, that is as digital information produced by humans and affecting human behavior and culture. It argues that there are ethical obligations to persons (...) affected by generalizable knowledge of a digital phenotype, not only those who are personally identifiable or involved in data generation. This claim is illustrated by considering the health-related digital phenotypes of precision medicine and digital epidemiology. (shrink)

All illness represents a state of diminished autonomy and therefore the doctor-patient relationship necessarily and justifiably involves a degree of medical paternalism argues the author, an American medical student. In a broad-ranging paper he discusses the concepts of autonomy and paternalism in the context of the doctor-patient relationship. Given the necessary diminution of autonomy which illness inflicts, a limited form of medical paternalism, aimed at restoring or maximising the patient's autonomy is entirely acceptable, and indeed fundamental to the relationship he (...) argues. However, the exercise of this paternalism should be flexible and related to the current 'level of autonomy' of the patient himself. An editorial in this issue comments briefly on this paper. (shrink)

A decade after the completion of the Human Genome Project, the widespread appeal of personalized genomic medicine's vision and potential virtues for health care remains compelling. Advocates argue that our current medical regime “is in crisis as it is expensive, reactive, inefficient, and focused largely on one size fits all treatments for events of late stage disease.” What is revolutionary about this kind of medicine, its advocates maintain, is that it promises to resolve that crisis by simultaneously increasing the ability (...) to be “personalized,” “predictive,” “preventive,” and “participatory.” Some call personalized genomic medicine “P4 Medicine,” inscribing these cardinal virtues into the movement's name. All of these putative virtues have interesting implications for the future of health care. In this essay, we are especially interested in the claims that personalized medicine will lead to a more “participatory” or “patient‐centered” approach to health care, in which patients are “empowered” to take more personal control over their care. The rhetoric of patient empowerment is nothing new in health care, but personalized medicine is an interesting case study because it portrays empowerment as one of its key virtues and as a mechanism for fixing the health care “crisis.”. (shrink)

Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...) movement usually offer four ways in which their approach to medical diagnosis and health care improves upon current practices, arguing that it is more “personalized,” “predictive,” “preventive,” and “participatory” than the medical status quo. Initially, it was personalization that seemed to best sum up the movement's appeal. By 2012, however, powerful opinion leaders were abandoning “personalized medicine” in favor of a new label: “precision medicine.” The new label received a decisive seal of approval when, in January 2015, President Obama unveiled plans for a national “precision medicine initiative” to promote the development and use of genomic tools in health care. (shrink)

Should people be involved as active participants in longitudinal medical research, as opposed to remaining passive providers of data and material? We argue in this article that misconceptions of ‘autonomy’ as a kind of feat rather than a right are to blame for much of the confusion surrounding the debate of dynamic versus broad consent. Keeping in mind two foundational facts of human life, freedom and dignity, we elaborate three moral principles – those of autonomy, integrity and authority – to (...) better see what is at stake. Respect for autonomy is to recognize the other's right to decide in matters that are important to them. Respect for integrity is to meet, in one's relationship with the other, their need to navigate the intersection between private and social life. Respect for authority is to empower the other – to help them to cultivate their responsibility as citizens. On our account, to force information onto someone who does not want it is not to respect that person's autonomy, but to violate integrity in the name of empowerment. Empowerment, not respect for autonomy, is the aim that sets patient-centred initiatives employing a dynamic consent model apart from other consent models. Whether this is ultimately morally justified depends on whether empowerment ought to be a goal of medical research, which is questionable. (shrink)

Discussions surrounding patient engagement and empowerment often use the terms “patient” and “consumer” interchangeably. But do the two terms hold the same meaning, or is a “patient” a passive actor in the health care arena and a “consumer” an informed, rational decision-maker? Has there been a shift in our usage of the two terms that aligns with the increasing commercialization of health care in the U.S. or has the patient/consumer dynamic always been a part of the buying and selling of (...) health care in the American system? Recent discussions of the issue exist in the popular press and in social media forums such as TEDMED, but few direct analyses of the ethical, legal, and policy ramifications of this possible shift in terminology are available in the academic literature. This paper analyzes our usage of the terms and any recent changes in the dynamic and discusses the ethical, legal, and policy implications of this simple terminology for the physicianpatient relationship. (shrink)

This article asserts that traditionally dominant models of health promotion in the US are fairly characterized by methodological individualism. This schema produces a focus on the individual as the node of intervention. Such emphasis results in a number of scientific and ethical problems. I identify three principal ethical deficiencies: first, the health promotions used are generally ineffective, which violates canons of distributive justice because scarce health resources are expended on interventions that are unlikely to produce health benefits. Second, the health (...) promotions used tend to expand health inequalities between the affluent and the least well-off. Third, the health promotions used are likely to intensify stigma against the least well-off, a deficiency that itself may exacerbate the ‘densely-woven patterns of disadvantage’ that characterize life on the tail of the social gradient. Because Powers and Faden’s health sufficiency model of social justice argues that the amelioration of such clusters of disadvantage should be the primary ethical goal of public health policy, methodologically individualist models of health promotion are ethically deficient and should not stand as primary approaches for health promotion in a just social order. (shrink)

Respice...prospice: Philosophy, ethics and the character of medical care for the future.

The 2018 Varsity Medical Ethics debate convened upon the motion: “This house believes that the constant monitoring of our health does more harm than good”. This annual debate between students from the Universities of Oxford and Cambridge is now in its tenth year. This year’s debate was hosted at the Oxford Union on 8th of February 2018, with Oxford winning for the Opposition, and was the catalyst for the collation and expansion of ideas in this paper.New technological devices have the (...) potential to enhance patient autonomy, improve patient safety, simplify the management of chronic diseases, increase connectivity between patients and healthcare professionals and assist individuals to make lifestyle changes to improve their health. However, these are pitted against an encroachment of technology medicalising the individual and home, an exacerbation of health inequalities, a risk to the security of patient data, an alteration of the doctor-patient relationship dynamic and an infringement on individual self-identity. This paper will draw upon and develop these concepts, while contending arguments for and against constant health monitoring. This is not a review of medical devices and health monitoring, but a reflective development and more detailed elaboration of the main points highlighted in the 2018 Varsity Medical Ethics debate. (shrink)

The 2018 Varsity Medical Ethics debate convened upon the motion: “This house believes that the constant monitoring of our health does more harm than good”. This annual debate between students from the Universities of Oxford and Cambridge is now in its tenth year. This year’s debate was hosted at the Oxford Union on 8th of February 2018, with Oxford winning for the Opposition, and was the catalyst for the collation and expansion of ideas in this paper.New technological devices have the (...) potential to enhance patient autonomy, improve patient safety, simplify the management of chronic diseases, increase connectivity between patients and healthcare professionals and assist individuals to make lifestyle changes to improve their health. However, these are pitted against an encroachment of technology medicalising the individual and home, an exacerbation of health inequalities, a risk to the security of patient data, an alteration of the doctor-patient relationship dynamic and an infringement on individual self-identity. This paper will draw upon and develop these concepts, while contending arguments for and against constant health monitoring. This is not a review of medical devices and health monitoring, but a reflective development and more detailed elaboration of the main points highlighted in the 2018 Varsity Medical Ethics debate. (shrink)

This paper aims to provide an overview of surveillance theories and concepts that can help to understand and debate surveillance in its many forms. As scholars from an increasingly wide range of disciplines are discussing surveillance, this literature review can offer much-needed common ground for the debate. We structure surveillance theory in three roughly chronological/thematic phases. The first two conceptualise surveillance through comprehensive theoretical frameworks which are elaborated in the third phase. The first phase, featuring Bentham and Foucault, offers architectural (...) theories of surveillance, where surveillance is often physical and spatial, involving centralised mechanisms of watching over subjects. Panoptic structures function as architectures of power, not only directly but also through disciplining of the watched subjects. The second phase offers infrastructural theories of surveillance, where surveillance is networked and relies primarily on digital rather than physical technologies. It involves distributed forms of watching over people, with increasing distance to the watched and often dealing with data doubles rather than physical persons. Deleuze, Haggerty and Ericson, and Zuboff develop different theoretical frameworks than panopticism to conceptualise the power play involved in networked surveillance. The third phase of scholarship refines, combines or extends the main conceptual frameworks developed earlier. Surveillance theory branches out to conceptualise surveillance through concepts such as dataveillance, access control, social sorting, peer-to-peer surveillance and resistance. With the datafication of society, surveillance combines the physical with the digital, government with corporate surveillance and top-down with self-surveillance. (shrink)

What is uncertainty? There are of course several possible definitions, offered by different fields, from epistemology to statistics, but, in the background, one usually finds some kind of relation with the lack of information, in the following sense. Suppose we define semantic or factual information as the combination of a question plus the relevant, correct answer. If one has both the question and the correct answer, one is informed: “was Berlin the capital of Germany in 2010? Yes”. If one has (...) the question but the incorrect answer, one is insipient. If one has neither, one is ignorant. And if one has only the question but not the answer, then one is uncertain. Uncertainty is what a correct answer to a relevant question erases. This is why, in information theory, the value of information is often discussed in terms of the amount of uncertainty that it decreases. And this is also why there are many things in life that we value, but uncertainty is not usually one of them. At first sight, .. (shrink)

Toleration is one of the fundamental principles that inform the design of a democratic and liberal society. Unfortunately, its adoption seems inconsistent with the adoption of paternalistically benevolent policies, which represent a valuable mechanism to improve individuals’ well-being. In this paper, I refer to this tension as the dilemma of toleration. The dilemma is not new. It arises when an agent A would like to be tolerant and respectful towards another agent B’s choices but, at the same time, A is (...) altruistically concerned that a particular course of action would harm, or at least not improve, B’s well-being, so A would also like to be helpful and seeks to ensure that B does not pursue such course of action, for B’s sake and even against B’s consent. In the article, I clarify the specific nature of the dilemma and show that several forms of paternalism, including those based on ethics by design and structural nudging, may not be suitable to resolve it. I then argue that one form of paternalism, based on pro-ethical design, can be compatible with toleration and hence with the respect for B’s choices, by operating only at the informational and not at the structural level of a choice architecture. This provides a successful resolution of the dilemma, showing that tolerant paternalism is not an oxymoron but a viable approach to the design of a democratic and liberal society. (shrink)

This paper criticizes the tendency to view the extension of the class of social actors, which stems from the process of democratization of data, as also implying the extension of the class of the political actors involved in the process of governance of the Information Society. The paper argues that social actors can upgrade to political actors once they become real interlocutors, namely political actors that can participate in the formation of the political discourse and that this can happen only (...) once they are able to combine, to a greater or lesser degree, the reduction of information asymmetries with the reduction of power differentials. (shrink)

Libertarian paternalism's notion of “nudging” refers to steering individual decision making so as to make choosers better off without breaching their free choice. If successful, this may offer an ideal synthesis between the duty to respect patient autonomy and that of beneficence, which at times favors paternalistic influence. A growing body of literature attempts to assess the merits of nudging in health care. However, this literature deals almost exclusively with health policy, while the question of the potential benefit of nudging (...) for the practice of informed consent has escaped systematic analysis. This article focuses on this question. While it concedes that nudging could amount to improper exploitation of cognitive weaknesses, it defends the practice of nudging in a wide range of other conditions. The conclusion is that, when ethically legitimate, nudging offers an important new paradigm for informed consent, with a special potential to overcome the classical dilemma between paternalistic beneficence and respect for autonomy. (shrink)

Libertarian paternalism is a concept derived from cognitive psychology and behavioural science. It is behind policies that frame information in such a way as to encourage individuals to make choices which are in their best interests, while maintaining their freedom of choice. Clinicians may view their clinical consultations as far removed from the realms of cognitive psychology but on closer examination there are a number of striking similarities.

This book helps us understand the true meaning of the concept and how it can be used to understand our world.

Personal Health Monitoring (PHM) uses electronic devices which monitor and record health-related data outside a hospital, usually within the home. This paper examines the ethical issues raised by PHM. Eight themes describing the ethical implications of PHM are identified through a review of 68 academic articles concerning PHM. The identified themes include privacy, autonomy, obtrusiveness and visibility, stigma and identity, medicalisation, social isolation, delivery of care, and safety and technological need. The issues around each of these are discussed. The system (...) / lifeworld perspective of Habermas is applied to develop an understanding of the role of PHMs as mediators of communication between the institutional and the domestic environment. Furthermore, links are established between the ethical issues to demonstrate that the ethics of PHM involves a complex network of ethical interactions. The paper extends the discussion of the critical effect PHMs have on the patient’s identity and concludes that a holistic understanding of the ethical issues surrounding PHMs will help both researchers and practitioners in developing effective PHM implementations. (shrink)

The concept of distributed moral responsibility (DMR) has a long history. When it is understood as being entirely reducible to the sum of (some) human, individual and already morally loaded actions, then the allocation of DMR, and hence of praise and reward or blame and punishment, may be pragmatically difficult, but not conceptually problematic. However, in distributed environments, it is increasingly possible that a network of agents, some human, some artificial (e.g. a program) and some hybrid (e.g. a group of (...) people working as a team thanks to a software platform), may cause distributed moral actions (DMAs). These are morally good or evil (i.e. morally loaded) actions caused by local interactions that are in themselves neither good nor evil (morally neutral). In this article, I analyse DMRs that are due to DMAs, and argue in favour of the allocation, by default and overridably, of full moral responsibility (faultless responsibility) to all the nodes/agents in the network causally relevant for bringing about the DMA in question, independently of intentionality. The mechanism proposed is inspired by, and adapts, three concepts: back propagation from network theory, strict liability from jurisprudence and common knowledge from epistemic logic. (shrink)

Proponents of the emerging field of P4 medicine argue that computational integration and analysis of patient-specific “big data” will revolutionize our health care systems, in particular primary care-based disease prevention. While many ambitions remain visionary, steps to personalize medicine are already taken via personalized genomics, mobile health technologies and pilot projects. An important aim of P4 medicine is to enable disease prevention among healthy persons through detection of risk factors. In this paper, we examine the current status of P4 medicine (...) in light of historical and current challenges to predictive and preventive medicine, including overdiagnosis and overtreatment. Moreover, we ask whether it is likely that in silico integration of patient-specific data will be able to better deal such challenges and to turn risk predictions into disease-preventive actions in a wider social context. Given the lack of evidence that P4 medicine can tip the balance between benefits and harms in preventive medicine, we raise concerns about the current promotion of P4 medicine as a solution to the current challenges in public health. (shrink)