The internet of things is increasingly spreading into the domain of medical and social care. Internet-enabled devices for monitoring and managing the health and well-being of users outside of traditional medical institutions have rapidly become common tools to support healthcare. Health-related internet of things (H-IoT) technologies increasingly play a key role in health management, for purposes including disease prevention, real-time tele-monitoring of patient’s functions, testing of treatments, fitness and well-being monitoring, medication dispensation, and health research (...) data collection. H-IoT promises many benefits for health and healthcare. However, it also raises a host of ethical problems stemming from the inherent risks of Internet enabled devices, the sensitivity of health-related data, and their impact on the delivery of healthcare. This paper maps the main ethical problems that have been identified by the relevant literature and identifies key themes in the on-going debate on ethical problems concerning H-IoT. (shrink)

Background The worldwide increase in older persons demands technological solutions to combat the shortage of caregiving and to enable aging in place. Smart home health technologies (SHHTs) are promoted and implemented as a possible solution from an economic and practical perspective. However, ethical considerations are equally important and need to be investigated. Methods We conducted a systematic review according to the PRISMA guidelines to investigate if and how ethical questions are discussed in the field of SHHTs in caregiving for (...) older persons. Results 156 peer-reviewed articles published in English, German and French were retrieved and analyzed across 10 electronic databases. Using narrative analysis, 7 ethical categories were mapped: privacy, autonomy, responsibility, human vs. artificial interactions, trust, ageism and stigma, and other concerns. Conclusion The findings of our systematic review show the (lack of) ethical consideration when it comes to the development and implementation of SHHTs for older persons. Our analysis is useful to promote careful ethical consideration when carrying out technology development, research and deployment to care for older persons. Registration We registered our systematic review in the PROSPERO network under CRD42021248543. (shrink)

Background: The concept of digital twins has great potential for transforming the existing health care system by making it more personalized. As a convergence of health care, artificial intelligence, and information and communication technologies, personalized health care services that are developed under the concept of digital twins raise a myriad of ethical issues. Although some of the ethical issues are known to researchers working on digital health and personalized medicine, currently, there is no (...) comprehensive review that maps the major ethical risks of digital twins for personalized health care services. Objective: This study aims to fill the research gap by identifying the major ethical risks of digital twins for personalized health care services. We first propose a working definition for digital twins for personalized health care services to facilitate future discussions on the ethical issues related to these emerging digital health services. We then develop a process-oriented ethical map to identify the major ethical risks in each of the different data processing phases. Methods: We resorted to the literature on eHealth, personalized medicine, precision medicine, and information engineering to identify potential issues and developed a process-oriented ethical map to structure the inquiry in a more systematic way. The ethical map allows us to see how each of the major ethical concerns emerges during the process of transforming raw data into valuable information. Developers of a digital twin for personalized health care service may use this map to identify ethical risks during the development stage in a more systematic way and can proactively address them. Results: This paper provides a working definition of digital twins for personalized health care services by identifying 3 features that distinguish the new application from other eHealth services. On the basis of the working definition, this paper further layouts 10 major operational problems and the corresponding ethical risks. Conclusions: It is challenging to address all the major ethical risks that a digital twin for a personalized health care service might encounter proactively without a conceptual map at hand. The process-oriented ethical map we propose here can assist the developers of digital twins for personalized health care services in analyzing ethical risks in a more systematic manner. (shrink)

While every health care system stakeholder would seem to be concerned with obtaining the greatest value from a given technology, there is often a disconnect in the perception of value between a technology’s promoters and those responsible for the ultimate decision as to whether or not to pay for it. Adopting an empirical ethics approach, this paper examines how five Canadian medical device manufacturers, via their websites, frame the corporate “value proposition” of their innovation and (...) seek to respond to what they consider the key expectations of their customers. Our analysis shows that the manufacturers’ framing strategies combine claims that relate to valuable socio-technical goals and features such as prevention, efficiency, sense of security, real-time feedback, ease of use and flexibility, all elements that likely resonate with a large spectrum of health care system stakeholders. The websites do not describe, however, how the innovations may impact health care delivery and tend to obfuscate the decisional trade-offs these innovations represent from a health care system perspective. Such framing strategies, we argue, tend to bolster physicians’ and patients’ expectations and provide a large set of stakeholders with powerful rhetorical tools that may influence the health policy arena. Because these strategies are difficult to counter given the paucity of evidence and its limited use in policymaking, establishing sound collective health care priorities will require solid critiques of how certain kinds of medical devices may provide a better (i.e., more valuable) response to health care needs when compared to others. (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)

The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions (...) and consumers may be rapid. However, a host of ethical concerns are also raised that must be addressed. The inherent sensitivity of health-related data being generated and latent risks of Internet-enabled devices pose serious challenges. Users, already in a vulnerable position as patients, face a seemingly impossible task to retain control over their data due to the scale, scope and complexity of systems that create, aggregate, and analyse personal health data. In response, the H-IoT must be designed to be technologically robust and scientifically reliable, while also remaining ethically responsible, trustworthy, and respectful of user rights and interests. To assist developers of the H-IoT, this paper describes nine principles and nine guidelines for ethical design of H-IoT devices and data protocols. (shrink)

In this paper, I examine the ethics of e - trust and e - trustworthiness in the context of health care, looking at direct computer-patient interfaces (DCPIs), information systems that provide medical information, diagnosis, advice, consenting and/or treatment directly to patients without clinicians as intermediaries. Designers, manufacturers and deployers of such systems have an ethical obligation to provide evidence of their trustworthiness to users. My argument for this claim is based on evidentialism about trust and trustworthiness: the (...) idea that trust should be based on sound evidence of trustworthiness. Evidence of trustworthiness is a broader notion than one might suppose, including not just information about the risks and performance of the system, but also interactional and context-based information. I suggest some sources of evidence in this broader sense that make it plausible that designers, manufacturers and deployers of DCPIs can provide evidence to users that is cognitively simple, easy to communicate, yet rationally connected with actual trustworthiness. (shrink)

The proposition that digital innovations can put people in charge of their health has been accompanied by prolific talk of empowerment. In this paper we consider ethical challenges and opportunities of trying to achieve justice and empowerment using digital health initiatives. The language of empowerment can misleadingly suggest that by using technology, people can control their health and take responsibility for health outcomes to a greater degree than is realistic or fair. Also, digital health (...) empowerment often primarily reaches people who already have high technological and health literacy, leaving others behind. We critically investigate whether the concept of health empowerment could be re-engineered to mean something different, namely the process of improving the health literacy and access of those who least possess it, in line with recent proposals for conceptual engineering in the service of justice. We settle on the weaker conclusion that underlying ethical values including justice should be used to interpret the existing concept of empowerment. To conclude, we take a high-level view of various strategies for achieving the ethical value associated with digital health empowerment. (shrink)

Much of the discussion of the role of emerging technologies associated with AI, machine learning, digital simulacra, and relevant ethical considerations such as those discussed in the target article, take a relatively narrow and episodic view of a person’s healthcare needs. There is much speculation about diagnostic, treatment, and predictive applications but relatively little consideration of how such technologies might be used to address a person’s lived experience of illness and ongoing care needs. This is likely due to the (...) greater weight or priority given to acute care needs and the role of medical treatment in care provision, but it may also reflect the limitations of current technologies and our limited vision of their potential application. Such limitations are not surprising given that we are still grappling with the complexities and nuances of achieving the ethical and humanistic ideals of care, namely, care that addresses the hermeneutical, relational, contextual, temporal, and agential dimensions of a person’s health and wellbeing. (shrink)

The growing proportion of elderly people in society, together with recent advances in robotics, makes the use of robots in elder care increasingly likely. We outline developments in the areas of robot applications for assisting the elderly and their carers, for monitoring their health and safety, and for providing them with companionship. Despite the possible benefits, we raise and discuss six main ethical concerns associated with: (1) the potential reduction in the amount of human contact; (2) an increase (...) in the feelings of objectification and loss of control; (3) a loss of privacy; (4) a loss of personal liberty; (5) deception and infantilisation; (6) the circumstances in which elderly people should be allowed to control robots. We conclude by balancing the care benefits against the ethical costs. If introduced with foresight and careful guidelines, robots and robotic technology could improve the lives of the elderly, reducing their dependence, and creating more opportunities for social interaction. (shrink)

Investigating an actual case that occurred in a New York state hospital where an Orthodox Jewish patient’s legal proxy demands that the clinicians and hospital administrators should provide aggressive treatment with all available technological resources for the seemingly brain-dead patient with a medically futile condition. The authors argue that a health care policy or regulation should be developed to limit patient’s access to technology in critical care. Otherwise, we will be allowing society to issue a carte (...) blanche to religious autonomy by technology abuse. It is argued that religious autonomy should be restricted when its demand exhibits apparent logical absurdity and/or goes against the common survival of the entire population. (shrink)

Technology is a practically indispensible means for satisfying one’s basic interests in all central areas of human life including nutrition, habitation, health care, entertainment, transportation, and social interaction. It is impossible for any one person, even a well-trained scientist or engineer, to know enough about how technology works in these different areas to make a calculated choice about whether to rely on the vast majority of the technologies she/he in fact relies upon. Yet, there are substantial (...) risks, uncertainties, and unforeseen practical consequences associated with the use of technological artifacts and systems. The salience of technological failure (both catastrophic and mundane), as well as technology’s sometimes unforeseeable influence on our behavior, makes it relevant to wonder whether we are really justified as individuals in our practical reliance on technology. Of course, even if we are not justified, we might nonetheless continue in our technological reliance, since the alternatives might not be attractive or feasible. In this chapter I argue that a conception of trust in technological artifacts and systems is plausible and helps us understand what is at stake philosophically in our reliance on technology. Such an account also helps us understand the relationship between trust and technological risk and the ethical obligations of those who design, manufacture, and deploy technological artifacts. (shrink)

Excerpt: 1. Introduction This chapter provides insight into the diverse ethical debates on genetics and epigenetics. Much controversy surrounds debates about intervening into the germline genome of human embryos, with catchwords such as genome editing, designer baby, and CRISPR/Cas. The idea that it is possible to design a child according to one’s personal preferences is, however, a quite distorted view of what is actually possible with new gene technologies and gene therapies. These are much more limited than the editing and (...) design metaphors suggest. Such metaphors are therefore highly problematic phrases in the context of new gene technologies, for two reasons. On one hand, to design a child of choice by modifying the genome would require modifying any gene of choice, which is more than can be done with current gene technologies, such as CRISPR/Cas. On the other hand, a modification of genes would need to be enough to create any characteristic of choice in the future child. The latter presupposes the assumption of genetic determinism. Moreover, the CRISPR/Cas technology can not only be used in a potentially therapeutic manner at the germline level. In addition, there is the (more likely) scenario of a future clinical therapeutic use of these new gene technologies for modifying the DNA sequence of other cells of the body (somatic genome editing). There is also the option of modifying the epigenome, that is, the spatial configuration of DNA (epigenome editing) (see table 1). Like genetics and genome editing, epigenetics has been at the center of recent popular scientific and ethical discourse as well as scientific debates. The concept of epigenetics has given rise to very different notions of inheritability and responsibility for health, which, however, are oftentimes based on scientifically controversial basic assumptions. That there continues to be covert genetic determinism in the form of epigenetic determinism (see table 2) in debates about epigenetics has been pointed out in ethical analyses of epigenetics. Neither genetic determinism nor epigenetic determinism has been confirmed scientifically. It is therefore important to recognize the concepts that are discussed (and sometimes harshly criticized) in debates about genome editing and epigenetics—for example, concepts about the causal role of DNA for our own life course. This importance is based on the fact that if we understand such controversial concepts, we will be able to remain critical when evaluating scientific knowledge and ethical arguments about genome editing and epigenetics. This chapter, therefore, explains some of these concepts. For an ethical analysis of epigenetics as well as of genome editing, it is necessary to understand and critically reflect upon the underlying concepts of genetic determinism and other, related -isms. The following section offers a detailed introduction to these -isms (section 2; see also table 2). Section 3 provides an ethical analysis of genome editing and epigenetics based on the explanations in section 2. Section 3 focuses on inheritability and responsibility, justice, safety, the problem of consent, and the effects of genome editing and epigenetics on embryos and future generations. This section does not discuss in detail further points that can be found in ethical debates about epigenetics as well as in ethical debates about genome editing. These points include (among others): • fear that the findings of epigenetics and that the methods of genome editing are misused—this also with respect to eugenics and enhancement; • naturalness—an issue we mention in passing a few times in the following analysis; • a possible connection between the genome/epigenome and the concept of human dignity, and the derived danger of instrumentalization and infringement of autonomy when intervening in the genome or epigenome. Since current discourse about ethical issues associated with genome editing focuses mainly on germline interventions, which are, for instance, interventions into a human embryo’s genome, we mainly focus on germline interventions when comparing the debates on genome editing and on epigenetics in section 3. (shrink)

This paper seeks to provide an overview of some of the main areas of debate that have emerged in recent years at the interface between theories of justice and health care. First, the paper consi- ders various positions as to what the index of justice with respect to health ought to be. It warns on practical and principled grounds against conceptual inflation of the notion of "health" as it appears in theories of distributive justice. Second, it (...) considers how various standards according to which goods ought to be distributed in a just society apply to debates within health care. (shrink)

Ambient assisted living technologies are increasingly presented and sold as essential smart additions to daily life and home environments that will radically transform the healthcare and wellness markets of the future. An ethical approach and a thorough understanding of all ethics in surveillance/monitoring architectures are therefore pressing. AAL poses many ethical challenges raising questions that will affect immediate acceptance and long-term usage. Furthermore, ethical issues emerge from social inequalities and their potential exacerbation by AAL, accentuating the existing access gap (...) between high-income countries and low and middle-income countries. Legal aspects mainly refer to the adherence to existing legal frameworks and cover issues related to product safety, data protection, cybersecurity, intellectual property, and access to data by public, private, and government bodies. Successful privacy-friendly AAL applications are needed, as the pressure to bring Internet of Things devices and ones equipped with artificial intelligence quickly to market cannot overlook the fact that the environments in which AAL will operate are mostly private. The social issues focus on the impact of AAL technologies before and after their adoption. Future AAL technologies need to consider all aspects of equality such as gender, race, age and social disadvantages and avoid increasing loneliness and isolation among, e.g. older and frail people. Finally, the current power asymmetries between the target and general populations should not be underestimated nor should the discrepant needs and motivations of the target group and those developing and deploying AAL systems. Whilst AAL technologies provide promising solutions for the health and social care challenges, they are not exempt from ethical, legal and social issues. A set of ELSI guidelines is needed to integrate these factors at the research and development stage. (shrink)

The application of Artificial Intelligence (AI) in healthcare and epidemiology undoubtedly has many benefits for the population. However, due to its environmental impact, the use of AI can produce social inequalities and long-term environmental damages that may not be thoroughly contemplated. In this paper, we propose to consider the impacts of AI applications in medical care from the One Health paradigm and long-term global health. From health and environmental justice, rather than settling for a short and (...) fleeting green honeymoon between health and sustainability caused by AI, it should aim for a lasting marriage. To this end, we conclude by proposing that, in the upcoming years, it could be valuable and necessary to promote more interconnected health, call for environmental cost transparency, and increase green responsibility. (shrink)

Healthcare systems across the globe are struggling with increasing costs and worsening outcomes. This presents those responsible for overseeing healthcare with a challenge. Increasingly, policymakers, politicians, clinical entrepreneurs and computer and data scientists argue that a key part of the solution will be ‘Artificial Intelligence’ (AI) – particularly Machine Learning (ML). This argument stems not from the belief that all healthcare needs will soon be taken care of by “robot doctors.” Instead, it is an argument that rests on the (...) classic counterfactual definition of AI as an umbrella term for a range of techniques that can be used to make machines complete tasks in a way that would be considered intelligent were they to be completed by a human. Automation of this nature could offer great opportunities for the improvement of healthcare services and ultimately patients’ health by significantly improving human clinical capabilities in diagnosis, drug discovery, epidemiology, personalised medicine, and operational efficiency. However, if these AI solutions are to be embedded in clinical practice, then at least three issues need to be considered: the technical possibilities and limitations; the ethical, regulatory and legal framework; and the governance framework. In this article, we report on the results of a systematic analysis designed to provide a clear overview of the second of these elements: the ethical, regulatory and legal framework. We find that ethical issues arise at six levels of abstraction (individual, interpersonal, group, institutional, sectoral, and societal) and can be categorised as epistemic, normative, or overarching. We conclude by stressing how important it is that the ethical challenges raised by implementing AI in healthcare settings are tackled proactively rather than reactively and map the key considerations for policymakers to each of the ethical concerns highlighted. (shrink)

Background: Transgender health care is a subject of much debate among clinicians, political commentators, and policy-makers. While the World Professional Association of Transgender Health (WPATH) Standards of Care (SOC) establish clinical standards, these standards contain implied ethics but lack explicit focused discussion of ethical considerations in providing care. An ethics chapter in the SOC would enhance clinical guidelines. Aims: We aim to provide a valuable guide for healthcare professionals, and anyone interested in the (...) ethical aspects of clinical support for gender diverse and transgender people of all ages. Recognizing that the WPATH is a global association, we address broad challenges. We offer a reflection on general ethical principles, providing conceptual tools for healthcare providers, patients, and families to navigate the specific challenges they might encounter in transgender health care, in line with WPATH’s worldwide mission and scope. Method: This article employs a descriptive analysis, and our framework of reference is the four principles of biomedical ethics: respect for autonomy, beneficence, nonmaleficence, and justice. Results: The article presents a discussion on the four ethical principles as applied to transgender health care. We address issues such as respect for patient autonomy in decision-making, the role of beneficence and nonmaleficence in clinical interventions, and the importance of justice in equitable treatment and access to care. Some of the ethical concerns we address in this article pertain to the current sociopolitical climate, where there has been increasing legal interference, internationally, for transgender and nonbinary people, particularly youth, seeking medical care. Discussion: We highlight the interplay between ethical principles and clinical practice, underscoring the need for ethical guidance in addressing the diverse challenges faced by healthcare providers and patients in transgender health care. We advocate for continuous refinement of ethical thinking to ensure that transgender health care is not only medically effective but also ethically sound. (shrink)

I discuss Young’s “asymmetrical reciprocity” and apply it to an ethics of mental health care. Due to its emphasis on engaging with others through respectful dialogue in an inclusive manner, asymmetrical reciprocity serves as an appropriate framework for guiding caregivers to interact with their patients and to understand them in a morally responsible and appropriate manner. In Section 1, I define empathy and explain its benefits in the context of mental health care. In Section 2, (...) I discuss two potential problems surrounding empathy: the difficulty of perspectivetaking and “compassion fatigue.” In Section 3, I argue that these issues can be resolved if examined through the lens of an ethics of care. Reciprocal relationships between patients and caregivers are an important element in the development of an ethics of care. In Section 4, I introduce two models of reciprocity that can be applied to a health care context: Benhabib’s symmetrical reciprocity and Young’s asymmetrical reciprocity. In Section 5, I demonstrate how asymmetrical reciprocity cultivates empathy and, in Section 6 and Section 7, I show how it overcomes the objections of empathy and improves therapeutic relationships. (shrink)

Discussions of patient-centred care and patient autonomy in bioethics have tended to focus on the decision-making context and the process of obtaining informed consent, leaving open the question of how patients ought to be counselled in the daily maintenance of their health and management of chronic disease. Patient activation is an increasingly prominent counselling approach and measurement tool that aims to improve patients’ confidence and skills in managing their own health conditions. The strategy, which has received little (...) conceptual or ethical analysis, raises important questions about how clinicians ought to foster confidence and a sense of control in their patients without exposing them to blame, stigma and other harms. In this paper, we describe patient activation, discuss its relationship to personal responsibility, autonomy and health disparities, and make recommendations regarding its use and measurement. (shrink)

A growing range of brain-computer interface (BCI) technologies is being employed for purposes of therapy and human augmentation. While much thought has been given to the ethical implications of such technologies at the ‘macro’ level of social policy and ‘micro’ level of individual users, little attention has been given to the unique ethical issues that arise during the process of incorporating BCIs into eHealth ecosystems. In this text a conceptual framework is developed that enables the operators of eHealth ecosystems to (...) manage the ethical components of such processes in a more comprehensive and systematic way than has previously been possible. The framework’s first axis defines five ethical dimensions that must be successfully addressed by eHealth ecosystems: 1) beneficence; 2) consent; 3) privacy; 4) equity; and 5) liability. The second axis describes five stages of the systems development life cycle (SDLC) process whereby new technology is incorporated into an eHealth ecosystem: 1) analysis and planning; 2) design, development, and acquisition; 3) integration and activation; 4) operation and maintenance; and 5) disposal. Known ethical issues relating to the deployment of BCIs are mapped onto this matrix in order to demonstrate how it can be employed by the managers of eHealth ecosystems as a tool for fulfilling ethical requirements established by regulatory standards or stakeholders’ expectations. Beyond its immediate application in the case of BCIs, we suggest that this framework may also be utilized beneficially when incorporating other innovative forms of information and communications technology (ICT) into eHealth ecosystems. (shrink)

Ongoing research in the fields of genetics and biotechnology hold the promise of improved diagnosis and treatment of genetic diseases, and potentially the development of individually tailored pharmaceuticals and gene therapies. Difficulty, however, arises in determining how these services are to be evaluated and integrated equitably into public health care systems such as Canada's. The current context is one of increasing fiscal restraint on the part of governments, limited financial resources being dedicated to health care, and (...) rising costs for new health care services and technologies. This has led to increasing public debate in the last few years about how to reform public health care, and whether we should prohibit, permit or perhaps even encourage private purchase of health care services. ;In Canada, some of these concerns have crystallized around the issue of gene patents and commercial genetic testing, in particular as illustrated by the case of Myriad Genetics' patented BRACAnalysis test for hereditary breast and ovarian cancer. While most Canadians who currently access genetic services do so through the public health care system, for those with the means, private purchase is becoming an option. This situation raises serious concerns---about justice in access to health care; about continued access to safe and reliable genetic testing supported by unbiased patient information; and about the broader effects of commercialization for ongoing research and the Canadian public health care system. Commercial genetic testing presents a challenge to health care professionals, policy analysts, and academics concerned with the social, ethical and policy implications of new genetic technologies. Using the Myriad case as an exemplar, tools from moral philosophy, the social sciences, and health policy and law will be brought to bear on the larger issues of how as a society we should regulate commercial research and product development, and more coherently decide which services to cover under public health insurance and which to leave to private purchase. Generally, the thesis is concerned with the question of "how best to bring capital, morality, and knowledge into a productive and ethical relationship". (shrink)

Type 1 diabetes (T1D) is a chronic illness that requires intensive lifelong management of blood glucose concentrations by means of external insulin administration. There have been substantial developments in the ways of measuring glucose levels, which is crucial to T1D self-management. Recently, continuous glucose monitoring (CGM) has allowed people with T1D to keep track of their blood glucose levels in near real-time. These devices have alarms that warn users about potentially dangerous blood glucose trends, which can often be shared with (...) ther people. CGM is consistently associated with improved glycemic control and reduced hypoglycemia and is currently recommended by doctors. However, due to the costs of CGM, only those who qualify for hospital provision or those who can personally afford it are able to use it, which excludes many people. In this paper, I argue that unequal access to CGM results in: (1) unjust health inequalities, (2) relational injustice, (3) injustice with regard to agency and autonomy, and (4) epistemic injustice. These considerations provide prima facie moral reasons why all people with T1D should have access to CGM technology. I discuss the specific case of CGM policy in the Netherlands, which currently only provides coverage for a small group of people with T1D, and argue that, especially with additional considerations of cost-effectiveness, the Dutch government ought to include CGM in basic health care insurance for all people with T1D. (shrink)

In recent years there has been an explosion of interest in Artificial Intelligence (AI) both in health care and academic philosophy. This has been due mainly to the rise of effective machine learning and deep learning algorithms, together with increases in data collection and processing power, which have made rapid progress in many areas. However, use of this technology has brought with it philosophical issues and practical problems, in particular, epistemic and ethical. In this paper the authors, (...) with backgrounds in philosophy, maternity care practice and clinical research, draw upon and extend a recent framework for shared decision-making (SDM) that identified a duty of care to the client's knowledge as a necessary condition for SDM. This duty entails the responsibility to acknowledge and overcome epistemic defeaters. This framework is applied to the use of AI in maternity care, in particular, the use of machine learning and deep learning technology to attempt to enhance electronic fetal monitoring (EFM). In doing so, various sub-kinds of epistemic defeater, namely, transparent, opaque, underdetermined, and inherited defeaters are taxonomized and discussed. The authors argue that, although effective current or future AI-enhanced EFM may impose an epistemic obligation on the part of clinicians to rely on such systems' predictions or diagnoses as input to SDM, such obligations may be overridden by inherited defeaters, caused by a form of algorithmic bias. The existence of inherited defeaters implies that the duty of care to the client's knowledge extends to any situation in which a clinician (or anyone else) is involved in producing training data for a system that will be used in SDM. Any future AI must be capable of assessing women individually, taking into account a wide range of factors including women's preferences, to provide a holistic range of evidence for clinical decision-making. (shrink)

In bioethics, the predominant categorization of various types of influence has been a tripartite classification of rational persuasion (meaning influence by reason and argument), coercion (meaning influence by irresistible threats—or on a few accounts, offers), and manipulation (meaning everything in between). The standard ethical analysis in bioethics has been that rational persuasion is always permissible, and coercion is almost always impermissible save a few cases such as imminent threat to self or others. However, many forms of influence fall into the (...) broad middle terrain—and this terrain is in desperate need of conceptual refining and ethical analysis in light of recent interest in using principles from behavioral science to influence health decisions and behaviors. This paper aims to address the neglected space between rational persuasion and coercion in bioethics. First, I argue for conceptual revisions that include removing the “manipulation” label and relabeling this space “nonargumentative]influence,” with two subtypes: “reason-bypassing” and “reason-countering.” Second, I argue that bioethicists have made the mistake of relying heavily on the conceptual categories themselves for normative work and instead should assess the ethical permissibility of a particular instance of influence by asking several key ethical questions, which I elucidate, that relate to (1) the impact of the form of influence on autonomy and (2) the relationship between the influencer and the influenced. Finally, I apply my analysis to two examples of nonargumentative influence in health care and health policy: (1) governmental agencies such as the Food and Drug Administration (FDA) trying to influence the public to be healthier using nonargumentative measures such as vivid images on cigarette packages to make more salient the negative effects of smoking, and (2) a physician framing a surgery in terms of survival rates instead of mortality rates to influence her patient to consent to the surgery. (shrink)

Conscientious objection in health care is a form of compromise whereby health care practitioners can refuse to take part in safe, legal, and beneficial medical procedures to which they have a moral opposition (for instance abortion). Arguments in defense of conscientious objection in medicine are usually based on the value of respect for the moral integrity of practitioners. I will show that philosophical arguments in defense of conscientious objection based on respect for such moral integrity are (...) extremely weak and, if taken seriously, lead to consequences that we would not (and should not) accept. I then propose that the best philosophical argument that defenders of conscientious objection in medicine can consistently deploy is one that appeals to (some form of) either moral relativism or subjectivism. I suggest that, unless either moral relativism or subjectivism is a valid theory—which is exactly what many defenders of conscientious objection (as well as many others) do not think—the role of moral integrity and conscientious objection in health care should be significantly downplayed and left out of the range of ethically relevant considerations. (shrink)

A book chapter exploring the potential consquences and ethical ramifications of using coercive measures within community mental healthcare. We argue that, althogh the move towards 'care in the community' may have had liberalising motivations, the subsequent reduction in inpatient or other supported residential provision, means that there has been an increasing move towards coercive measures outside of formal inpatient detention. We consider measures such as Community Treatment Orders, inducements, and other forms of leverage, explaining the underlying concepts, aims, and (...) exploring adverse consequences and ethical difficulties. (shrink)

How can we allocate scarce health care resources justly? In particular, are markets the most efficient way to deliver health services? Much blood, sweat and ink has been shed over this issue, but rarely has either faction challenged the unspoken assumption behind the claim made by advocates of markets: that efficiency advances the interests of both individuals and society. Whether markets actually do increase efficiency is arguably a matter for economists, but the deeper ethical question is whether (...) efficiency is the correct criterion, in terms of social justice and individual needs. (shrink)

This paper argues that societal duties of health promotion are underwritten (at least in large part) by a principle of beneficence. Further, this principle generates duties of justice that correlate with rights, not merely “imperfect” duties of charity or generosity. To support this argument, I draw on a useful distinction from bioethics and on a somewhat neglected approach to social obligation from political philosophy. The distinction is that between general and specific beneficence; and the approach from political philosophy has (...) at times been called equality of concern. After clarifying the distinction and setting out the basis of the equality of concern view, I argue that the result is a justice-based principle of “specific” beneficence that should be reflected in a society’s health policy. I then draw on this account to criticize, refine, and extend some prominent health care policy proposals from the bioethics literature. (shrink)

The truth about health care policy lies between two exaggerated views: a market view in which individuals purchase their own health care from profit maximizing health-care firms and a control view in which costs are controlled by regulations limiting which treatments health insurance will pay for. This essay suggests a way to avoid on the one hand the suffering, unfairness, and abandonment of solidarity entailed by the market view and, on the other hand, (...) to diminish the inflexibility and inefficiency of the control view. It suggests that the way to mitigate these problems is to recognize the malleability of motivation and the range of factors, in addition to financial incentives, that may influence the behavior of patients and especially physicians. (shrink)

A new world has probably emerged through the progression of technology which has led to significant debates on social, cultural, legal, and ethical issues, especially in the biomedical field in this century. Application of physician-patient relationship, principles of pluralism, autonomy, democracy, human dignity, and human rights is being challenged within the medicine and health-care system of today. Development of technology-based remedies has fostered greater degrees of medicalization. Hence, the automatic application of such technologies risks distorting the (...) nature of medicine. To be sure, there is a cultural shift that is affecting the society that is increasingly unable to adapt to traditional legal systems. This cultural shift, perhaps, demands new ethics. This entry aims to evaluate the gap between traditional deontological nature of medicine and the emerging new ethics and assess why bioethical reflection is needed. (shrink)

The context of international health research involving human subjects, and this should appear obvious, is the human community. As such, basic questions of how human beings should be treated by other human beings, particularly in situations of unequal power – e.g., in the form of control, choice, or opportunity – lay at the foundations of related ethical discourse when ethics are discussed at all. I trace a narrative that follows upon a recent revision process of international guidelines for (...) biomedical research involving human subjects. I focus in particular upon the issue of a standard of care. In the second section, I draw upon philosophers John Rawls, Claudia Card, and Allen Buchanan to discuss concerns regarding the 'least advantaged members of society' in the context of global inequality. The paper includes reflections upon pedagogy in courses focused upon international health research involving human subjects. (shrink)

Many assume that theories of distributive justice must obviously take people’s lifetimes, and only their lifetimes, as the relevant period across which we distribute. Although the question of the temporal subject has risen in prominence, it is still relatively underdeveloped, particularly in the sphere of health and healthcare. This paper defends a particular view, “momentary sufficientarianism,” as being an important element of healthcare justice. At the heart of the argument is a commitment to pluralism about justice, where theorizing about (...) just principles demands paying attention to the role particular goods play in our lives. This means that different approaches to the temporal subject—as well as other relevant issues—may be appropriate for different goods, including different goods within healthcare. In particular, the paper discusses two central goods targeted by healthcare: life-saving and pain relief. The view is offered as complementary to, rather than competitive with, lifetime approaches. As such, the paper finishes by considering how a pluralist approach, which engages both with people’s lives as a whole and with their states at particular moments, can reconcile the potentially competing claims in healthcare that emerge from these two perspectives. (shrink)

With by far the lowest population density in the United States, myriad challenges attach to healthcare delivery in Alaska. In the “Size, Population, and Accessibility” section, we characterize this geographic context, including how it is exacerbated by lack of infrastructure. In the “Distributing Healthcare” section, we turn to healthcare economics and staffing, showing how these bear on delivery—and are exacerbated by geography. In the “Health Care in Rural Alaska” section, we turn to rural care, exploring in more (...) depth what healthcare delivery looks like outside of Alaska’s major cities. This discussion continues in the “Alaska’s Native Villages” section, which specifically analyzes healthcare in Alaska’s indigenous villages, some of the smallest and most isolated communities in the United States. Though many of the ways we could improve Alaskan health care for Alaskan residents are limited by its unique features, the “Justice and Healthcare Delivery” and “Technology and Telemedicine” sections consider ways in which certain policies and technology—including telemedicine—could mitigate the challenges developed in previous sections. (shrink)

Medicine is often thought of as a science of the body, but it is also a science of data. In some contexts, it can even be asserted that data drive health. This article focuses on a key piece of data technology central to contemporary practices of medicine: the medical record. By situating the medical record in the perspective of its history, we inquire into how the kinds of data that are kept at sites of clinical encounter often depend (...) on informational requirements that originate well outside of the clinic, in particular in health insurance records systems. Although this dependency of today's electronic medical records on billing requirements is widely lamented by clinical providers, its history remains little studied. Following the archaeology of medicine developed by Michel Foucault in The Birth of the Clinic and expanding his methodology in light of more recent contributions to the field of media archaeology, this article excavates some of the underexplored technological conditions that help constitute today's electronic medical record. If in some contexts, it is true that data drive health, then an archaeology of medical records helps reveal how health insurance records often impact clinical care and, by extension, health and disease. (shrink)

New technologies such as smart sensors improve rehabilitation processes and thereby increase older adults’ capabilities to participate in social life, leading to direct physical and mental health benefits. Wearable smart sensors for home use have the additional advantage of monitoring day-to-day activities and thereby identifying rehabilitation progress and needs. However, identifying and selecting rehabilitation priorities is ethically challenging because physicians, therapists, and caregivers may impose their own personal values leading to paternalism. Therefore, we develop a discussion template consisting of (...) a series of adaptable questions for the patient–physician encounter based on the capability approach. The goal is to improve geriatric rehabilitation and thereby increase participation in social life and well-being. To achieve this goal, we first analyzed what is considered important for participation on basis of the capability approach, human rights, and ethics of care. Second, we conducted an ethical analysis of each of the four identified dimensions of participation: political, economic, socio-cultural, and care. To improve compliance with rehabilitation measures, health professionals must align rehabilitation measures in an open dialogue with the patient’s aspiration for participation in each dimension. A discussion template based on the capability approach allows for a proactive approach in patient information and stimulates a critical assessment of treatment alternatives while reducing the risk of imposing personal values. (shrink)

PrEP (Pre-Exposure Prophylaxis) is a relatively new drug-based HIV prevention technique and an important means to lower the HIV risk of gay men who are especially vulnerable to HIV. From the perspective of biopolitics, PrEP inscribes itself in a larger trend of medicalization and the rise of pharmapower. This article reconstructs and evaluates contemporary literature on biopolitical theory as it applies to PrEP, by bringing it in a dialogue with a mapping of the political debate on PrEP. As PrEP changes (...) sexual norms and subjectification, for example condom use and its meaning for gay subjectivity, it is highly contested. The article shows that the debate on PrEP can be best described with the concepts ‘sexual-somatic ethics’ and ‘democratic biopolitics’, which I develop based on the biopolitical approach of Nikolas Rose and Paul Rabinow. In contrast, interpretations of PrEP which are following governmentality studies or Italian Theory amount to either farfetched or trivial positions on PrEP, when seen in light of the political debate. Furthermore, the article is a contribution to the scholarship on gay subjectivity, highlighting how homophobia and homonormativity haunts gay sex even in liberal environments, and how PrEP can serve as an entry point for the destigmatization of gay sexuality and transformation of gay subjectivity. ‘Biopolitical democratization’ entails making explicit how medical technology and health care relates to sexual subjectification and ethics, to strengthen the voice of (potential) PrEP users in health politics, and to renegotiate the profit and power of Big Pharma. (shrink)

Concerns of moral distress in health care have never been more relevant. In her book, Health Care Ethics Through the Lens of Moral Distress, Kristen Jones-Bonofiglio provides a comprehensive review of the effects of moral distress on providers and health care delivery, while highlighting the complexities of making ethical decisions in practice. Jones-Bonofiglio’s thoroughness and use of interdisciplinary, historical, and cultural scholarship makes this book an excellent introductory resource on moral distress for (...) class='Hi'>health care providers and researchers alike. (shrink)

Objective: This main aim of the study is to explore COVID-19 pandemic problems from the perspective of public health-clinical care ethics through online mediareports in Turkey. Method: This research was designed as a descriptive and qualitative study that assesses COVID-19 through online media reports on critics between the periods of March 11, 2020 and April 2 2020 as a quantitative as number of reports and qualitative study, across Turkey. Reports were from Turkish Medical Association websites which included (...) newspaper reports. Study data were presented as statistically and qualitative data case and headlines. No ethical or ofTicial permission was sought as the study was conducted through open access internet news sites. Results: This online reports analysis retrieved about 6723 articles about the COVID-19. According to study data, information about COVID-19 were themed as follows: general deTiciencies in taking action and isolation, lack of isolation, passengers and transport vehicles not quarantined ; insufTicient diagnostic tests, decision to test after healthcare professionals become infected, lack of equipment, lack of evaluation outbreak countries [Table 2]. Conclusion and Suggestions: COVID-19 is a pandemic and is a global public health problem that concerns every individual and needs to be handled carefully. This requires a multi-faceted preparation and education. In this context, healthcare professionals should be well trained in this aspect and have all the necessary equipment throughout the process. Additionally, it should work systematically with the cooperation of all health organizations, the Ministry of Health, local governments and of course the media, in order to inform society, fairly distribute the resources and to implement the safety measures effectively. BrieTly, lack of transparency, insufTicient information, limited resources, lack of public health protection measures such as partial quarantine decision, partial implementation of the scientiTic board's re c ommenda ti on s fo r e c on omi c rea s on s, and contradiction of the explanations are revealed as serious ethical problems. (shrink)

The recent pandemic is a reminder of several important lessons from Popper's philosophy. My aim in this paper is to address some of these lessons. By making use of Popper's theory of three worlds, I explain how coronavirus has a far-reaching impact on the ecosystem of rationality, and how the viruses that threaten humans could also be a threat to the whole life on Earth. Applying the epistemological distinction between science and technology, I go on to explain the pivotal (...) role of science in preventing further crises. This, I argue, is done by putting technology in the sphere of rationality; through both criticizing technologies and inspiring the invention of clean technologies, and also technologies that serve us as alerting systems. I shall argue that critical rationalism helps us to understand the ‘pandemic problem situation’ in a more informed manner and thus helps us to find out about the vulnerable points of our ecosystem of rationality in a more efficient way. In the latter part of the paper, I shall develop the thesis that while during the recent pandemic, science did it best to warn us about its dangers, the policy-makers, who are technologists of a sort, in many countries did not take those warnings seriously. Even when the crisis turned into a global catastrophe, the three types of technologies (health-care, lock-down, and diagnosis and treatment) were not fully efficient in controlling the pandemic. Drawing on Popper’s ideas I shall argue that in the face of the current emergency, our best chance to improve our situation is to apply the method of piecemeal social engineering to alleviate people’s suffering. (shrink)

In this paper, we discuss the ethical concerns that may arise from the synthesis of human DNA. To date, only small stretches of DNA have been constructed, but the prospect of generating human genomes is becoming feasible. At the same time, the significance of genes for identity, health and reproduction is coming under increased scrutiny. We examine the implications of DNA synthesis and its impact on debates over the relationship with our DNA and the ownership of our genes, its (...) potential to disrupt common understandings of reproduction and privacy, and the way in which synthetic DNA challenges traditional associations between genes and identity. We explore the degree to which synthetic DNA may further undermine overgeneticised accounts of identity, health, reproduction, parenthood and privacy that are prevalent in the public domain and in some areas of policy-making. While avoiding making normative claims of our own, we conclude that there is a need for reflection on the ethical implications of these developing technologies before they are on us. (shrink)

Citizens in wealthy liberal democracies are typically expected to see to basic needs like food, clothing, and shelter out of their own income, and those without the means to do so usually receive assistance in the form of cash transfers. Things are different with health care. Most liberal societies provide their citizens with health care or health care insurance in kind, either directly from the state or through private insurance companies that are regulated like (...) public utilities. Except perhaps for small co-pays or deductibles, citizens are not expected to see to their health needs out-of-pocket, at least for some basic level of care. Instead, when a citizen gets sick, the state or her insurance company foots the... (shrink)

Health care providers (HCPs) are routinely placed into morally challenging situations that have the potential to cause moral distress. This is especially true for HCPs working in the military, whether they are on deployment outside their typical contexts of practice such as in disaster relief (e.g., Haiti and the Ebola missions in West Africa), or in more typically military settings such as peace keeping or armed conflicts (e.g., Afghanistan, Syria). Moral distress refers to “painful feelings and/or psychological disequilibrium” (...) (Nilsson, Sjöberg, Kallenberg, & Larsson, 2011, p. 50) that occur when an individual is aware of a morally appropriate action in a moral dilemma but obstruction prevents them from carrying it out, or when in a situation where they must choose between upholding equally treasured but conflicting moral values. Similarly, moral distress can occur when faced with a ‘tragic choice’ where all available courses of action require something of moral significance to be given up, such as surgical triage in a mass casualty event (Hunt, Sinding, & Schwartz, 2012). In the literature, moral distress has been connected to negative psychological effects and even stress related mental health issues including compassion fatigue, burnout, and post-traumatic stress disorder (Owen & Wanzer, 2014; Gustafsson, Eriksson, Strandberg, & Norberg, 2010; Litz, et al., 2009). (shrink)

Breast cancer treatment is being transformed by artificial intelligence (AI). Nevertheless, most scientists, engineers, and physicians aren't ready to contribute to the healthcare AI revolution. In this paper, we discuss our experiences teaching a new American student undergraduate course that seeks to train the next generation for cross-cultural design thinking, which we believe is critical for AI to realize its full potential in breast cancer treatment. The main tasks of this course are preparing, performing and translating interviews with healthcare professionals (...) from both Portugal and the USA. Since the course is offered in Portugal as a short-term faculty-led study abroad program, students can explore the effect of culture on healthcare delivery and the design of healthcare technologies. The learning tests demonstrated student growth for breast cancer treatment in many areas important for the development of AI. In respect to understanding breast cancer care, most students had undervalued the effect of cancer and its treatment on the quality of life of women before taking this course and most were unaware of the importance of multidisciplinary care teams. Regarding AI in medical, students became more mindful of data privacy issues and the need to consider the effect of AI on healthcare professionals. (shrink)

This chapter serves as an introduction to the edited collection of the same name, which includes chapters that explore digital well-being from a range of disciplinary perspectives, including philosophy, psychology, economics, health care, and education. The purpose of this introductory chapter is to provide a short primer on the different disciplinary approaches to the study of well-being. To supplement this primer, we also invited key experts from several disciplines—philosophy, psychology, public policy, and health care—to share their (...) thoughts on what they believe are the most important open questions and ethical issues for the multi-disciplinary study of digital well-being. We also introduce and discuss several themes that we believe will be fundamental to the ongoing study of digital well-being: digital gratitude, automated interventions, and sustainable co-well-being. (shrink)

Last year saw the 20th anniversary edition of JECP, and in the introduction to the philosophy section of that landmark edition, we posed the question: apart from ethics, what is the role of philosophy ‘at the bedside’? The purpose of this question was not to downplay the significance of ethics to clinical practice. Rather, we raised it as part of a broader argument to the effect that ethical questions – about what we should do in any given situation (...) – are embedded within whole understandings of the situation, inseparable from our beliefs about what is the case, what it is that we feel we can claim to know, as well as the meaning we ascribe to different aspects of the situation or to our perception of it. Philosophy concerns fundamental questions: it is a discipline requiring us to examine the underlying assumptions we bring with us to our thinking about practical problems. Traditional academic philosophers divide their discipline into distinct areas that typically include logic: questions about meaning, truth and validity; ontology: questions about the nature of reality, what exists; epistemology: concerning knowledge; and ethics: how we should live and practice, the nature of value. Any credible attempt to analyse clinical reasoning will require us to think carefully about these types of question and the relationships between them, as they influence our thinking about specific situations and problems. So, the answers to the question we posed, about the role of philosophy at the bedside, are numerous and diverse, and that diversity is illustrated in the contributions to this thematic edition. (shrink)

This chapter serves as an introduction to the edited collection of the same name, which includes chapters that explore digital well-being from a range of disciplinary perspectives, including philosophy, psychology, economics, health care, and education. The purpose of this introductory chapter is to provide a short primer on the different disciplinary approaches to the study of well-being. To supplement this primer, we also invited key experts from several disciplines—philosophy, psychology, public policy, and health care—to share their (...) thoughts on what they believe are the most important open questions and ethical issues for the multi-disciplinary study of digital well-being. We also introduce and discuss several themes that we believe will be fundamental to the ongoing study of digital well-being: digital gratitude, automated interventions, and sustainable co-well-being. (shrink)

Given the wide the range of legally available options for end-of-life care in recent decades: from aggressive, even experimental, treatment to active euthanasia, our ethical analysis struggles to keep pace with technology and law. In this essay I show that the principle of double effect (PDE) remains, and will continue to be, a useful tool for ethical analysis of end-of-life care. According to PDE, an agent may ethically perform an act that s/he foresees will have a significant (...) bad effect (e.g., death) in addition to a good effect (e.g., pain relief) only if s/he does not intend the bad effect, the act is not bad for reasons other than its causing the bad effect, and there is a proportionately serious reason to act. Following a brief explanation of PDE and preliminary considerations in favor of counting death as a bad effect, I analyze several end-of-life options in terms of the principle. I begin with those that enjoy significant consensus among proponents of PDE: active euthanasia, “passive euthanasia,” and palliative care. Then I consider the less-straightforward cases of drug provision, refusing food and water, and terminal sedation, arguing that participation in such actions is justifiable via PDE only under very limited conditions. (shrink)