Utilitarianism, the great reforming philosophy of the nineteenth century, has today acquired the reputation for being a crassly calculating, impersonal philosophy unfit to serve as a guide to moral conduct. Yet what may disqualify utilitarianism as a personal philosophy makes it an eminently suitable guide for public officials in the pursuit of their professional responsibilities. Robert E. Goodin, a philosopher with many books on political theory, public policy and applied ethics to his credit, defends utilitarianism against its critics and shows (...) how it can be applied most effectively over a wide range of public policies. In discussions of such issues as paternalism, social welfare policy, international ethics, nuclear armaments, and international responses to the environment crisis, he demonstrates what a flexible tool his brand of utilitarianism can be in confronting the dilemmas of public policy in the real world. (shrink)

A vital and underappreciated dimension of social interaction is the way individuals justify their actions to others, instinctively drawing on their experience to appeal to principles they hope will command respect. Individuals, however, often misread situations, and many disagreements can be explained by people appealing, knowingly and unknowingly, to different principles. On Justification is the first English translation of Luc Boltanski and Laurent Thévenot's ambitious theoretical examination of these phenomena, a book that has already had a huge impact on French (...) sociology and is likely to have a similar influence in the English-speaking world. In this foundational work of post-Bourdieu sociology, the authors examine a wide range of situations where people justify their actions. The authors argue that justifications fall into six main logics exemplified by six authors: civic (Rousseau), market (Adam Smith), industrial (Saint-Simon), domestic (Bossuet), inspiration (Augustine), and fame (Hobbes). The authors show how these justifications conflict, as people compete to legitimize their views of a situation. On Justification is likely to spark important debates across the social sciences. (shrink)

Virginia Held assesses the ethics of care as a promising alternative to the familiar moral theories that serve so inadequately to guide our lives. The ethics of care is only a few decades old, yet it is by now a distinct moral theory or normative approach to the problems we face. It is relevant to global and political matters as well as to the personal relations that can most clearly exemplify care. This book clarifies just what the ethics of care (...) is: what its characteristics are, what it holds, and what it enables us to do. It discusses the feminist roots of this moral approach and why the ethics of care can be a morality with universal appeal. Held examines what we mean by "care," and what a caring person is like. Where other moral theories demand impartiality above all, the ethics of care understands the moral import of our ties to our families and groups. It evaluates such ties, focusing on caring relations rather than simply on the virtues of individuals. The book proposes how such values as justice, equality, and individual rights can "fit together" with such values as care, trust, mutual consideration, and solidarity. In the second part of the book, Held examines the potential of the ethics of care for dealing with social issues. She shows how the ethics of care is more promising than Kantian moral theory and utilitarianism for advice on how expansive, or not, markets should be, and on when other values than market ones should prevail. She connects the ethics of care with the rising interest in civil society, and considers the limits appropriate for the language of rights. Finally, she shows the promise of the ethics of care for dealing with global problems and seeing anew the outlines of international civility. (shrink)

This paper compares and contrasts three different substantive principles of justice for making health care priority-setting or “rationing” decisions: need principles, maximising principles and egalitarian principles. The principles are compared by tracing out their implications for a hypothetical rationing decision involving four identified patients. This decision has been the subject of an empirical study of public opinion based on small-group discussions, which found that the public seem to support a pluralistic combination of all three kinds of rationing principle. In conclusion, (...) it is suggested that there is room for further work by philosophers and others on the development of a coherent and pluralistic theory of health care rationing which accords with public opinions. (shrink)

Winner of the 1975 National Book Award, this brilliant and widely acclaimed book is a powerful philosophical challenge to the most widely held political and social positions of our age--liberal, socialist, and conservative.

The coming of bioethics -- The coming of bioethicists -- "Choices on our conscience": the inauguration of the Kennedy Institute of Education -- "Hello, Dolly": bioethics in the media -- Celebrating bioethics and bioethicists -- Thinking socially and culturally in bioethics -- Reminiscences of observing participants -- Bioethics circles the globe -- Bioethics in France -- The development of bioethics in the Islamic Republic of Pakistan -- The coming of the culture wars to American bioethics.

Human rights have become an important ideal in current times, yet our age has witnessed more violations of human rights than any previous less enlightened one. This book explores the historical and theoretical dimensions of this paradox. Divided into two parts, the first section offers an alternative history of natural law, in which natural rights are represented as the eternal human struggle to resist opression and to fight for a society in which people are no longer degraded or despised. At (...) the time of their birth in the 18th Century and again in the popular uprisings of the last decade, human rights became the dominant critique of law and society. The radical rhetoric of rights and its apparently endless expansive potential has led to its adoption by governments and individuals alike seeking to justify their actions on moral grounds and has undermined its radical edge. Part Two examines the philosophical logic of rights. The classical critiques of Kant, Burke, Hegel and Marx illuminate traditional aproaches to the concept of human rights. The work of Heidegger, Sartre and psychoanalysis is used to deconstruct the metaphisical essentialism of bothe universalists and cultural relativists. Finally, through a consideration of the ethics of otherness, and with reference to recent human rights violations, it is argued that the end of human rights is to judge law and politics from a moral stand point which both transcends the present and is historically relevant. (shrink)

Blending social analysis and philosophy, Albert Borgmann maintains that technology creates a controlling pattern in our lives.

In recent years there has been a good deal of discussion of equality’s place in the best account of distribution or distributive justice. One central question has been whether egalitarianism should give way to a principle requiring us to give priority to the worse off. In this article, I shall begin by arguing that the grounding of equality is indeed insecure and that the priority principle appears to have certain advantages over egalitarianism. But I shall then claim that the priority (...) principle itself is ungrounded and that the priority principle should itself give way to a sufficiency principle based — indirectly, via the notion of an impartial spectator — on compassion for those who are badly off. (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 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)

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)

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)

M. Ellul's view of technology is that once it is let out of the laboratory, technology cannot be turned off. Technology begets more technology. The modern world, therefore, is one in which more technology is inevitable. Fixing or remediating the impact of a technology like water pollution requires--you guessed it--more technology.

This paper analyses rhetorics of scientific and corporate enthusiasm surrounding nanotechnology. I argue that enthusiasts for nanotechnologies often try to have it both ways on questions concerning the nature and possible impact of these technologies, and the inevitability of their development and use. In arguments about their nature and impact we are simultaneously informed that these are revolutionary technologies with the potential to profoundly change the world and that they merely represent the extension of existing technologies. They are revolutionary and (...) familiar. In debates surrounding possible regulation of these technologies it is claimed both that their development is inevitable, so that regulation would be fruitless, and that increased research funding and legislative changes are necessary in order that we can enjoy their benefits. That is, they are inevitable and precarious. An increased awareness of these rhetorical contradictions may allow us better to assess the likely impact and future of nanotechnology. (shrink)

In recent years, critical scholarship has drawn attention to increasing power differentials between corporations that use data and people whose data is used. A growing number of scholars see digital data and information commons as a way to counteract this asymmetry. In this paper I raise two concerns with this argument: First, because digital data and information can be in more than one place at once, governance models for physical common-pool resources cannot be easily transposed to digital commons. Second, not (...) all data and information commons are suitable to address power differentials. In order to create digital commons that effectively address power asymmetries we must pay more systematic attention to the issue of exclusion from digital data and information commons. Why and how digital data and information commons exclude, and what the consequences of such exclusion are, decide whether commons can change power asymmetries or whether they are more likely to perpetuate them. (shrink)

In recent years, all major consumer technology corporations have moved into the domain of health research. This ‘Googlization of health research’ begs the question of how the common good will be served in this research. As critical data scholars contend, such phenomena must be situated within the political economy of digital capitalism in order to foreground the question of public interest and the common good. Here, trends like GHR are framed within a double, incommensurable logic, where private gain and economic (...) value are pitted against public good and societal value. While helpful for highlighting the exploitative potential of digital capitalism, this framing is limiting, insofar as it acknowledges only one conception of the common good. This article uses the analytical framework of modes of justification developed by Boltanksi and Thévenot to identify a plurality of orders of worth and conceptualizations of the common good at work in GHR. Not just the ‘civic’ and ‘market’ orders, but also an ‘industrial’, a ‘project’, and what I call a ‘vitalist’ order. Using promotional material of GHR initiatives and preliminary interviews with participants in GHR projects, I ask what moral orientations guide different actors in GHR. Engaging seriously with these different conceptions of the common good is paramount. First, in order to critically evaluate them and explicate what is at stake in the move towards GHR, and ultimately, in order to develop viable governance solutions that ensure strong ‘civic’ components. (shrink)

Deep brain stimulation (DBS) is an effective treatment for the debilitating motor symptoms of Parkinson’s disease and other neurological disorders. However, clinicians and commentators have noted that DBS recipients have not necessarily experienced the improvements in quality of life that would be expected, due in large part to what have been described as the ‘psychosocial’ impacts of DBS. The premise of this paper is that, in order to realise the full potential of DBS and similar interventions, clinical services need to (...) be arranged in such a way that these psychosocial dimensions are recognised and managed. Our starting point is that the psychosocial effects of DBS ‘in the field’ present us with analytically-useful disruptions: they disturb and foreground deeply held assumptions relating to the individual, health and its treatment, and which in a crude form manifest as the myth of technological solutionism within health care. Drawing on scholarship in medical sociology and science and technology studies (STS), we argue that DBS brings to the fore the relational dimensions of personhood, and demonstrates the emotional and social turmoil that can result if the relational dimensions of personhood are ignored by clinical services. In light of this, we argue that DBS should be implemented within a regime of care. Drawing on ethnographic research of a paediatric DBS clinical service, we provide an example of a regime of care, and conclude by reflecting on what other DBS services might learn from this paediatric service. (shrink)

This short but highly ambitious book asks us to rethink the evolution of the ideas on which modern states are built. Larry Siedentop argues that the core of what is now our system of beliefs, liberalism, emerged much earlier than generally recognised, established not in the Renaissance but by the arguments of lawyers and philosophers in the twelfth and thirteenth centuries. There are large parts of the world--fundamentalist Islam; quasi-capitalist China--where other belief systems flourish. Faced with these challenges, understanding our (...) own ideas' origins is more than ever an important part of knowing who we are."--Publisher's Web site. (shrink)

There has been a surge in mass media reports extolling the potential for using three-dimensional printing of biomaterials to treat a wide range of clinical conditions. Given that mass media is recognized as one of the most important sources of health and medical information for the general public, especially prospective patients, we report and discuss the ethical consequences of coverage of 3D bioprinting in the media. First, we illustrate how positive mass media narratives of a similar biofabricated technology, namely the (...) Macchiarini scaffold tracheas, which was involved in lethal experimental human trials, influenced potential patient perceptions. Second, we report and analyze the positively biased and enthusiastic portrayal of 3D bioprinting in mass media. Third, we examine the lack of regulation and absence of discussion about risks associated with bioprinting technology. Fourth, we explore how media misunderstanding is dangerously misleading the narrative about the technology. (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)

Public-private partnerships are established to specifically harness the potential of Big Data in healthcare and can include partners working across the data chain—producing health data, analysing data, using research results or creating value from data. This domain paper will illustrate the challenges that arise when partners from the public and private sector collaborate to share, analyse and use biomedical Big Data. We discuss three specific challenges for PPPs: working within the social licence, public antipathy to the commercialisation of public sector (...) health data, and questions of ownership, both of the data and any resulting intellectual property or products. As a specific example we consider the case of the UK National Health Service providing patient data to Google’s DeepMind AI program to develop a diagnostic app for kidney disease. This article is an application of the framework presented in this issue of ABR. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. We use four specific values to help analysis these issues: public benefit, stewardship, transparency and engagement. We demonstrate how the Deliberative Framework can support ethical governance of PPPs involving biomedical big data. (shrink)

Surgical innovation promises improvements in healthcare, but it also raises ethical issues including risks of harm to patients, conflicts of interest and increased injustice in access to health care. In this article, we focus on risks of injustice, and use a case study of robotic prostatectomy to identify features of surgical innovation that risk introducing or exacerbating injustices. Interpreting justice as encompassing matters of both efficiency and equity, we first examine questions relating to government decisions about whether to publicly fund (...) access to innovative treatments. Here the case of robotic prostatectomy exemplifies the difficulty of accommodating healthcare priorities such as improving the health of marginalized groups. It also illustrates challenges with estimating the likely long-term costs and benefits of a new intervention, the difficulty of comparing outcomes of an innovative treatment to those of established treatments, and the further complexity associated with patient and surgeon preferences. Once the decision has been made to fund a new procedure, separate issues of justice arise at the level of providing care to individual patients. Here, the case of robotic prostatectomy exemplifies how features of surgical innovation, such as surgeon learning curves and the need for an adequate volume of cases at a treatment centre, can exacerbate injustices associated with treatment cost and the logistics of travelling for treatment. Drawing on our analysis, we conclude by making a number of recommendations for the just introduction of surgical innovations. (shrink)

This theoretical paper argues for prioritarianism as an ethical underpinning for digital health in contexts of extreme disadvantage. In support of this claim, the paper develops three prioritarian principles for making ethical decisions for digital health programme design, grounded in the normative position that the greater the need, the stronger the moral claim. The principles are positioned as an alternative view to the prevailing utilitarian approach to digital health, which the paper argues is not sufficient to address the needs of (...) the worst off. As researchers of digital health, we must ensure that the most globally marginalised are not overlooked by overtly technocentric implementation practices. Consequently, the paper concludes by advocating for use of the three principles to support stronger critical reflection on the ethics involved in the design and implementation of digital health programmes. (shrink)

This article challenges a key tacit assumption underpinning legal and ethical instruments in health care, namely, that people are ideally bounded, independent, and often also strategically rational individuals. Such an understanding of personhood has been criticized within feminist and other critical scholarship as being unfit to capture the deeply relational nature of human beings. In the field of medicine, however, it also causes tangible problems. I propose that a solidarity-based perspective entails a relational approach and as such helps to formulate (...) new solutions to complex ethical and regulatory questions, ranging from caring for people at the end of their lives to improving policies for organ donation and better governance of health data. It also underscores the importance of universal health care. Although a solidarity-based perspective does not require health to be seen as an individually enforceable right, it does influence our understanding of individual rights: it draws attention to how their meaning is shaped by shared social practices. I conclude by arguing that, in light of current pressures for medicine to become more personalized, using a relational understanding of personhood to shape policies and practices is a much needed endeavor. (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)

Advancements in technology are shifting the ways that biomedical data are collected, managed, and used. The pervasiveness of connected devices is expanding the types of information that are defined as ‘health data.’ Additionally, cloud-based mechanisms for data collection and distribution are shifting biomedical research away from traditional infrastructure towards a more distributed and interconnected ecosystem. This shift provides an opportunity for us to reimagine the roles of scientists and participants in health research, with the potential to more meaningfully engage in (...) partnership across the research process. At the same time, these emerging practices present a potential to expose research participants to unanticipated and unintended consequences. Social norms and policy can help to mitigate these risks, but their development is often slow relative to the pace of technological advances and, as such, they can become reactive rather than prospective. As an alternative, the integrated development of data governance structures within technological advancements, supports their effective implementation, evaluation and evolution in a manner that can balance the benefits and risks of biomedical researcher in a decentralized ecosystem. (shrink)

In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of (...) traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research. (shrink)

When it comes to improving the health of the general population, mHealth technologies with self-monitoring and intervention components hold a lot of promise. We argue, however, that due to various factors such as access, targeting, personal resources or incentives, self-monitoring applications run the risk of increasing health inequalities, thereby creating a problem of social justice. We review empirical evidence for “intervention-generated” inequalities, present arguments that self-monitoring applications are still morally acceptable, and develop approaches to avoid the promotion of health inequalities (...) through self-monitoring applications. (shrink)

As information technologies have become synonymous with progress in modern society, several ethical concerns have surfaced about their societal implications. In the past few decades, information technologies have had a value-laden impact on social evolution. However, there is limited agreement on the responsibility of businesses and innovators concerning the ethical aspects of information technologies. There is a need to understand the role of business incentives and attitudes in driving technological progress and to understand how they steer the ethics discourse on (...) technology. In the information technology industry, there is an observed trivialization of ethics supported by a business driven and technology-centric approach to ethics. This trivialization rests on hardened beliefs, ideologies, and arguments which hint at reduced accountability for business and tend to individualize social responsibility. The phenomenon of ethics trivialization needs to be duly addressed to resolve the tensions between business needs and ethical concerns. This paper has identified from literature and conceptually analyzed the beliefs and ideologies underlying ethics trivialization which undermine ethics in business contexts. The paper has attempted to address the business concerns indicated by this phenomenon as well as highlight the weaknesses of its assumptions, rhetoric, and justifications. The aim of this paper is to systematically present the justifications in favor of and against the practice of ethics trivialization in the information technology domain, thereby highlighting the need to develop frameworks for assessment of ethical responsibility, accountability, and democratization of the value trade-offs involved in the design of technologies. (shrink)

Purpose – This paper has three purposes: to identify and discuss values that should be promoted and respected in personal health monitoring, to formulate an ethical checklist that can be used by stakeholders, and to construct an ethical matrix that can be used for identifying values, among those in the ethical checklist, that are particularly important to various stakeholders. Design/methodology/approach – On the basis of values that empirical studies have found important to various stakeholders in personal health monitoring, the author (...) constructs an ethical checklist and an ethical matrix. The author carries out a brief conceptual analysis and discusses the implications. Findings – The ethical checklist consists of three types of values: practical values that a technical product in personal health monitoring must have, quality of life values to be promoted by the development and use of the product, and moral values to be respected in this development and use. To give guidance in practice, the values in the checklist must be interpreted and balanced. The ethical matrix consists of the values in the checklist and a number of stakeholders. Originality/value – The overall ambition is to suggest a way of categorizing values that can be useful for stakeholders in personal health monitoring. In order to achieve this, the study takes empirical studies as a starting-point and includes a conceptual analysis. This means that the proposals are founded on practice rather than mere abstract thinking, and this improves its usability. (shrink)