As national and state health care policy -making becomes contentious and complex, there is a need for a forum to debate and explore public concerns and values in health care, give voice to local citizens, to facilitate consensus among various stakeholders, and provide feedback and direction to health care institutions and policy makers. This paper explores the role that regional health care ethics committees can play and provides two contrasting examples of Networks involved in facilitation of public input into (...) and the development of health care policies and adoption of state-wide practices. (shrink)

This volume of articles, literature and case studies illustrates the central importance of human values throughout healthcare. The readings are structured around the main stages of the clinical encounter from the patient's perspective.

This edited volume illustrates the central importance of diversity of human values throughout healthcare. The readings are organised around the main stages of the clinical encounter from the patient's perspective. This introductory chapter opens up crucial issues of methodology and of practical application in this highly innovative approach to the role of ethics in healthcare.

Abstract Aim: The COVID-19 infection is transmitted either by human-to-human contact, social-physical contact, and respiratory droplets or by touching items touched by the infected. This has triggered some conflicted behaviors such as stigma, violence, and opposite behavior applause. The aim of this study is to explore several newspaper articles about stigma, violence, or insensitive behavior against healthcare professionals and to analyze the reason for these behaviors during these COVID-19 pandemics. Method: The website of the Turkish Medical Association "Press Releases (...) News" and online newspaper articles have been scanned using keywords and have been classified and analyzed according to the content of articles between the periods of March 11 to April 28, 2020. This is a qualitative study with content analysis. No official ethical permission was obtained as the study was conducted through open access internet news sites. Result: 16 reports were selected from online reports that matched the keywords of the study. 13 of these reports included desensitization, violence, lack of precaution, stigmatization, and applause, and 3 reports included doctors’ statements. After being categorized, content analyses were conducted. Conclusion: This study revealed the necessity of a multi-faceted evaluation of the problems faced by healthcare professionals who are at the forefront of the COVID-19 outbreak. This study has a primary role in the detection, diagnosis, and treatment of the pandemic and reveals that doctors are trying to fulfill their duties in an ethical framework despite stigmatized behavior. Authorities should provide various supports to protect healthcare professionals before, during, and after the epidemic for the success of the COVID-19 outbreak struggle. (shrink)

This article will explore and summarise the four main ethical theories that have relevance for healthcare assistants. These are utilitarianism, deontology, virtue ethics, and principlism. Understanding different ethical theories can have a number of significant benefits, which have the potential to shape and inform the care of patients, challenge bad practice and lead staff to become better informed about areas of moral disagreement.

Health service consumers' satisfaction with the services they receive has been a challenge over the past decade, and this has been attributed to many factors that diverse scholars have investigated using different variables. In this study, the attitude and ethical behaviours of healthcare providers as antidotes to health service consumers' satisfaction in the Primary Health Centre at Mgbuoshimini, Port Harcourt, Nigeria, were investigated. A cross-sectional descriptive research design was used to select participants from pregnant women, nursing mothers, couples for (...) family planning, and sick patients. The data were analysed using descriptive statistical tools. The results of the grand total response values were 400 (100%) and strongly agree had 190 (47.5%), agree had 160 (40%), 390 (100%) and strongly agree had 260 (66.7%), agree had 100 (25.6%), and strongly disagree had 13 (3.3%). The overall results were strongly agreed (66.7%) and agreed (25.6%); these connote that the attitudes and ethical behaviours of the healthcare providers towards healthcare service consumers in the primary healthcare facility were poor and that healthcare providers do not execute good ethical behaviour towards health service consumers in the facility, leading to low levels of health resource consumption, low patronage image promotion, and consumers' loss of confidence in the service provider. Therefore, the government should put mechanisms in place to ensure a positive attitude and favourable ethical behaviour among healthcare providers, and individual healthcare providers should also acquire soft skills to improve their attitude and ethical behaviour. (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)

Healthcare practitioners have access to a range of ethical guidance. However, the normative role of this guidance in ethical decision-making is underexplored. This paper considers two ways that healthcare practitioners could approach ethics guidance. We first outline the idea of deference to ethics guidance, showing how an attitude of deference raises three key problems: moral value; moral understanding; and moral error. Drawing on philosophical literature, we then advocate an alternative framing of ethics guidance as a (...) form of moral testimony by colleagues and suggest that a more promising attitude to ethics guidance is to approach it in the spirit of ‘critical engagement’ rather than deference. (shrink)

The objective of this article is to shed light on some challenging questions regarding public health and medical ethics that the Turkish healthcare system has recently been forced to confront. In recent years, terrorists in eastern Turkey have launched increasingly destructive attacks, including numerous attempts to undermine the social order by targeting not only government agencies but also the healthcare system. In this study, 54 terrorist incidents specifically targeting the Turkish healthcare system and healthcare professionals (...) were analyzed and divided into 6 categories according to the type of attack. Each category was evaluated in terms of the relevant ethical issues, with regard to both public health and medical ethics. This study shows that terrorist activity may lead to numerous breaches of public health and clinical ethics rules. Therefore, healthcare policy must involve special precautions to minimize breaches of public health and medical ethics in the face of terrorist attacks. (shrink)

Healthcare professionals decide wisely about personalized medicine, treatment plans, and resource allocation by utilizing big data analytics and machine learning. To guarantee that algorithmic recommendations are impartial and fair, however, ethical issues relating to prejudice and data privacy must be taken into account. Big data analytics and machine learning have a great potential to disrupt healthcare, and as these technologies continue to evolve, new opportunities to reform healthcare and enhance patient outcomes may arise. In order to investigate (...) the patient’s outcomes with empirical evidence, this research was conducted using an online survey to incorporate healthcare professionals, patient’s reviews, and clinical staff. The data were analyzed using SmartPLS 4.0 to predict the structural model. The findings revealed a direct impact as positive influence of using machine learning on healthcare performance and patient outcomes through big data analytics. Moreover, it is evident that this can lead to personalized treatment plans, early interventions, and improved patient outcomes. Additionally, big data analytics can help healthcare providers optimize resource allocation, improve operational efficiency, and reduce costs. The impact of big data analytics on patient outcome and healthcare performance is expected to continue to grow, making it an important area for investment and research. (shrink)

On 8th August 2019, Secretary of State for Health and Social Care, Matt Hancock, announced the creation of a £250 million NHS AI Lab. This significant investment is justified on the belief that transforming the UK’s National Health Service (NHS) into a more informationally mature and heterogeneous organisation, reliant on data-based and algorithmically-driven interactions, will offer significant benefit to patients, clinicians, and the overall system. These opportunities are realistic and should not be wasted. However, they may be missed (one may (...) recall the troubled Care.data programme) if the ethical challenges posed by this transformation are not carefully considered from the start, and then addressed thoroughly, systematically, and in a socially participatory way. To deal with this serious risk, the NHS AI Lab should create an Ethics Advisory Board and monitor, analyse, and address the normative and overarching ethical issues that arise at the individual, interpersonal, group, institutional and societal levels in AI for healthcare. (shrink)

One fundamental healthcare issue brought to the fore by the current COVID-19 pandemic concerns the scope and nature of the right to healthcare. Given our increasing need for the usually limited healthcare resources, to what extent can we demand provision of these resources as a matter of right? One philosophical way of handling this issue is to clarify the nature of this right. Using the challenges of COVID-19 in the Philippines as the context of analysis, we argue (...) for the view that regards the right to healthcare as fundamentally moral in kind, which should thereby guide its legal and contractual appropriations. In particular, we respond to objections against this view stemming from issues concerning the universality and satisfiability of the right’s correlative duty. We deal with such issues by invoking the relative degree of incumbency of moral rights and the capability-relativity of positive duties. We further contend that as these factors define the scope of the moral right to healthcare, they thus constrain what we can demand as a matter of right to meet our healthcare needs in this time of the pandemic. (shrink)

Chronic fatigue syndrome or myalgic encephalomyelitis remains a controversial illness category. This paper surveys the state of knowledge and attitudes about this illness and proposes that epistemic concerns about the testimonial credibility of patients can be articulated using Miranda Fricker’s concept of epistemic injustice. While there is consensus within mainstream medical guidelines that there is no known cause of CFS/ME, there is continued debate about how best to conceive of CFS/ME, including disagreement about how to interpret clinical studies of treatments. (...) Against this background, robust qualitative and quantitative research from a range of countries has found that many doctors display uncertainty about whether CFS/ME is real, which may result in delays in diagnosis and treatment for patients. Strikingly, qualitative research evinces that patients with CFS/ME often experience suspicion by health professionals, and many patients vocally oppose the effectiveness, and the conceptualization, of their illness as psychologically treatable. We address the intersection of these issues and healthcare ethics, and claim that this state of affairs can be explained as a case of epistemic injustice. We find evidence that healthcare consultations are fora where patients with CFS/ME may be particularly vulnerable to epistemic injustice. We argue that the marginalization of many patients is a professional failure that may lead to further ethical and practical consequences both for progressive research into CFS/ME, and for ethical care and delivery of current treatments among individuals suffering from this debilitating illness. (shrink)

The objective of this article is to shed light on some challenging questions regarding public health and medical ethics that the Turkish healthcare system has recently been forced to confront. In recent years, terrorists in eastern Turkey have launched increasingly destructive attacks, including numerous attempts to undermine the social order by targeting not only government agencies but also the healthcare system. In this study, 54 terrorist incidents specifically targeting the Turkish healthcare system and healthcare professionals (...) were analyzed and divided into 6 categories according to the type of attack. Each category was evaluated in terms of the relevant ethical issues, with regard to both public health and medical ethics. This study shows that terrorist activity may lead to numerous breaches of public health and clinical ethics rules. Therefore, healthcare policy must involve special precautions to minimize breaches of public health and medical ethics in the face of terrorist attacks. (shrink)

Some philosophers and segments of the public think age is relevant to healthcare priority-setting. One argument for this is based in equity: “Old” patients have had either more of a relevant good than “young” patients or enough of that good and so have weaker claims to treatment. This article first notes that some discussions of age-based priority that focus in this way on old and young patients exhibit an ambiguity between two claims: that patients classified as old should have (...) a low priority, and that patients classified as young should have high priority. The author next argues, drawing on a problem raised by Christine Overall, that equity cannot justify giving “old” patients low priority, since there is wide variety in the total lifetime experiences of older people, partly influenced by gender, race, class, and disability injustice. Finally, the author suggests that there might be a limited role for age-based prioritization in the context of infant and childhood death, since those who die in childhood are always and uncontroversially among the worst-off. (shrink)

Christine Clavien and Samia Hurst (henceforth C-H) make at least three valuable contributions to the literature on responsibility and healthcare. They offer an admirably clear and workable set of criteria for determining a patient's degree of responsibility for her health condition; they deploy those criteria to cast doubt on the view that patients with lifestyle-related conditions are typically significantly responsible for their conditions; and they outline several practical difficulties that would be raised by any attempt to introduce responsibility-sensitive (...) class='Hi'>healthcare funding. I am sympathetic to the general thrust of their argument, share—at least tentatively—their policy conclusions, and was persuaded by much of the detail of their argument. However, I do have three critical comments. (shrink)

This thesis under the title “Public Health Policy in Resource Allocation: the Role of Ubuntu Ethics in Redressing Resource Disparity between Public and Private Healthcare in South Africa” explores health care disparities pertaining to resource allocation between public and private sector. It is of relevance and importance in South Africa where 54% of the population live on less than US$3 per day. Although the government has instituted certain changes aimed at transforming the public health care system, the resource (...) allocation gap between the two persists and remains wide. The research gives special attention to the role that Ubuntu ethics can play in redressing the resource allocation disparities between public and private health care sectors in South Africa, pointing out the existing gap in financing, as well as human resource between public and private health care sectors, which leads to poor health outcomes in public sector. Therefore, the problem is the prevalent inequality of resource allocation between private and public health care sectors. The analysis of policy gaps, as well as evaluating the cause of disparities in the health system is the goal of this research. The study endeavours to redress the disparities within the context of Ubuntu ethical principles and proposes a change in public policy so as to enhance healthcare for the benefit of the people. The study is philosophical and ethical, so the methodology used is discursive in nature, majorly focusing on critically reviewing existing literature, that is, the philosophical resources on Ubuntu ethics and justice theories as well as a range of government resources inclusive of public health policy documents. Social determinants of health and their impact in a South African context are discussed with the implication that health is not merely freedom from disease and or incapacity, but rather being well mentally, physically and socially. The attainment of a healthy status goes beyond ability to access healthcare services, and incorporates social determinants including but not limited to conditions in which people have been born into, stay, establish career and grow old in. It also includes the arrangements put in place to deal with illness and determine health. Issues of revenue, literacy, communal safety networks, vocation and conditions under-which vocation is undertaken, lack of work and vocation insecurity, early stages of human development, gender, cultural group, dietary insecurity, housing communal exclusion and disability all come into the picture as factors that determine health. But there is also discussion of the socio-economic status as contributors to health inequity wherein alcohol abuse, sugar intake, and smoking are identified as behavioural factors that complicate public health. One outstanding feature of this research is that it establishes a link between Ubuntu and public health policy. The researcher establishes that Ubuntu ethics is appropriate for not only discussing public morality, but also for formulating public policy that is morally tenable for South Africa, especially for the public health sector. This thesis calls for an application of Ubuntu in a proper context in order to enhance societal well-being for the benefit of many, if not all. The research proposes the fundamental principle of Ubuntu ethics in which the good of the community is as important as the good of every member of the community. Since Ubuntu ethics does not merely seek to fulfil what benefits the majority, as would be the case in a utilitarian society, the researcher advocates for the building of consensus on the common good, which should be understood to imply not just what is good for everyone in the community, but also what is good for the continued well-being of the community as a single unit. In this regard, the research finds it important that deliberate effort be made to integrate Ubuntu ethics into policies, citing the example of the National Health Insurance (NHI). The good health of all the members of a community is an assurance of the well-being and continuity of the whole national community. The research concludes that public health policy should integrate Ubuntu ethical values such as community, sharing, care, solidarity, identity, harmony, respect, and dignity into policy documents and legislation. (shrink)

Trans healthcare and thus trans people have been severely affected by the COVID-19 pandemic. Trans people’s healthcare situations have turned out to be so vulnerable in this crisis because they have been precarious to begin with. There are multiple ways in which trans healthcare has been affected: Surgeries and other procedures have been cancelled or postponed, and mental health services have been paused or moved online. This raises ethical questions around discrimination against trans people in the (...) class='Hi'>healthcare system. This article argues that cancelling trans surgeries and procedures in the COVID-19 crisis is made possible through an understanding of trans healthcare as non-essential. The article explores how trans healthcare in particular has been affected by the pandemic. (shrink)

A dogma accepted in many ethical, religious, and legal frameworks is that the reasons behind conscientious objection (CO) in healthcare cannot be evaluated or judged by any institution because conscience is individual and autonomous. This paper shows that this background view is mistaken: the requirement to reveal and explain the reasons for conscientious objection in healthcare is ethically justified and legally desirable. Referring to real healthcare cases and legal regulations, this paper argues that these reasons should be (...) evaluated either ex ante or ex post and defends novel conceptual claims that have not been analyzed in the debates on CO. First, a moral threshold requirement: CO is only justified if the reasons behind a refusal are of a moral nature and meet a certain threshold of moral importance. Second, this paper considers the rarely discussed conceptual similarities between CO in healthcare and the legal regulations concerning military refusals that place the burden of proof on conscientious objectors. This paper concludes that conscientious objection in healthcare can be accommodated only in some cases of destroying or killing human organisms. (shrink)

While there is a prolific debate surrounding the issue of conscientious objection of individuals towards performing certain clinical acts, this debate ignores the fact that there are other reasons why clinicians might wish to object providing specific services. This paper briefly discusses the idea that healthcare workers might object to providing specific services because they are against their professional judgement, they want to maintain a specific reputation, or they have pragmatic reasons. Reputation here is not simply understood as being (...) in good standing with a professional body. Rather, reputation is treated in the sense that a craftsman might wish to be known for providing a specific type, quality, and style of service. Professionalism is understood as acting according to the philosophical and scientific principles that are the basis of healthcare (such as acting for the benefit of the patient’s health and following well- evidenced treatment pathways). (shrink)

This paper sketches a framework for the separation of church and state and, with the framework in view, indicates why a government’s maintaining such separation poses challenges for balancing two major democratic ideals: preserving equality before the law and protecting liberty, including religious liberty. The challenge is particularly complex where healthcare is either provided or regulated by government. The contemporary problem in question here is the contraception coverage requirement in the Obama Administration’s healthcare mandate. Many institutions have mounted (...) legal challenges to the mandate on grounds of religious freedom. The paper proposes a number of interconnected principles toward a resolution of the problem: for the institutional realm, specific principles for church-state separation and a principle concerning the protection of citizens’sense of identity; and for the ethics of citizenship in the conduct individuals, principles that provide an adequate place for natural (thus secular) reason in lawmaking and political decisions. (shrink)

Rare diseases pose a particular priority setting problem. The UK gives rare diseases special priority in healthcare priority setting. Effectively, the National Health Service is willing to pay much more to gain a quality-adjusted life-year related to a very rare disease than one related to a more common condition. But should rare diseases receive priority in the allocation of scarce healthcare resources? This article develops and evaluates four arguments in favour of such a priority. These pertain to public (...) values, luck egalitarian distributive justice the epistemic difficulties of obtaining knowledge about rare diseases and the incentives created by a higher willingness to pay. The first is at odds with our knowledge regarding popular opinion. The three other arguments may provide a reason to fund rare diseases generously. However, they are either overinclusive because they would also justify funding for many non-rare diseases or underinclusive in the sense of justifying priority for only some rare diseases. The arguments thus fail to provide a justification that tracks rareness as such. There are no data in this work. (shrink)

Technologies to rapidly alert people when they have been in contact with someone carrying the coronavirus SARS-CoV-2 are part of a strategy to bring the pandemic under control. Currently, at least 47 contact-tracing apps are available globally. They are already in use in Australia, South Korea and Singapore, for instance. And many other governments are testing or considering them. Here we set out 16 questions to assess whether — and to what extent — a contact-tracing app is ethically justifiable.

It has been argued that ethical frameworks for data science often fail to foster ethical behavior, and they can be difficult to implement due to their vague and ambiguous nature. In order to overcome these limitations of current ethical frameworks, we propose to integrate the analysis of the connections between technical choices and sociocultural factors into the data science process, and show how these connections have consequences for what data subjects can do, accomplish, and be. Using healthcare as an (...) example, attention to sociocultural conversion factors relevant to health can help in navigating technical choices that require broader considerations of the sociotechnical system, such as metric tradeoffs in model validation, resulting in better ethical and technical choices. This approach promotes awareness of the ethical dimension of technical choices by data scientists and others, and that can foster the cultivation of 'ethical skills' as integral to data science. (shrink)

Lippert-Rasmussen and Petersen discuss my ‘Moral case for legal age change’ in their article ‘Age change, official age and fairness in health’. They argue that in important healthcare settings (such as distributing vital organs for dying patients), the state should treat people on the basis of their chronological age because chronological age is a better proxy for what matters from the point of view of justice than adjusted official age. While adjusted legal age should not be used in deciding (...) who gets scarce vital organs, I remind the readers that using chronological age as a proxy is problematic as well. Using age as a proxy could give wrong results and it is better, if possible, for states to use the vital information directly than use age as a proxy. (shrink)

We live in an age of evidence-based healthcare, where the concept of evidence has been avidly and often uncritically embraced as a symbol of legitimacy, truth, and justice. By letting the evidence dictate healthcare decision making from the bedside to the policy level, the normative claims that inform decision making appear to be negotiated fairly—without subjectivity, prejudice, or bias. Thus, the term ‘‘evidence-based’’ is typically read in the health sciences as the empirically adequate standard of reasonable practice and (...) a means for increasing certainty. Supporters believe that evidence-based medicine (EBM) can introduce rational order to the deliberative processes of healthcare decision making. It is perhaps puzzling, then, to come across critical perspectives (typically arising from the humanities and the more theory-driven social sciences) raising concerns about a seeming technogovernance being introduced by this deferral to the evidence where power interests can be obfuscated by way of technical resolve. The critics holding this minority view argue that technological solutions to problems of knowledge and practice cannot replace medicine’s normative content. Against EBM’s democratic leanings toward transparency and accountability, medical criteria alone cannot decide valueladen ethically charged decisions. This paper attempts to explain and evaluate this important debate in the philosophy of medicine, focusing specifically on the dispute over 'evidence-based women's health'. (shrink)

The paper discusses the possibility that the benefits of pharmacogenomics will not be distributed equally and will create orphan populations. I argue that since these inequalities are not substantially different from those produced by ‘traditional’ drugs and are not generated with the intention to discriminate, their production needs not be unethical. Still, the final result is going against deep-seated moral feelings and intuitions, as well as broadly accepted principles of just distribution of health outcomes and healthcare. I thus propose (...) two provisos that would prevent the most offensive outcomes and moderate the scope of the produced inequalities. The first proviso rejects pharmacogenomics innovations that worsen existing group inequalities and aggravate the disadvantage of communities with a history of discrimination. The second proviso requires that there is a strategy in place to even out as much as possible the distribution of benefits in the future and that a system of compensations is in place for pharmacogenomic orphans. Given that only one moral problem generated by pharmacogenomics has been tackled, the list of provisos might be expanded when other issues are considered. (shrink)

This article presents the first thematic review of the literature on the ethical issues concerning digital well-being. The term ‘digital well-being’ is used to refer to the impact of digital technologies on what it means to live a life that is good for a human being. The review explores the existing literature on the ethics of digital well-being, with the goal of mapping the current debate and identifying open questions for future research. The review identifies major issues related to (...) several key social domains: healthcare, education, governance and social development, and media and entertainment. It also highlights three broader themes: positive computing, personalised human–computer interaction, and autonomy and self-determination. The review argues that three themes will be central to ongoing discussions and research by showing how they can be used to identify open questions related to the ethics of digital well-being. (shrink)

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)

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health (...) and Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

This article presents the first thematic review of the literature on the ethical issues concerning digital well-being. The term ‘digital well-being’ is used to refer to the impact of digital technologies on what it means to live a life that isgood fora human being. The review explores the existing literature on the ethics of digital well-being, with the goal of mapping the current debate and identifying open questions for future research. The review identifies major issues related to several key (...) social domains: healthcare, education, governance and social development, and media and entertainment. It also highlights three broader themes: positive computing, personalised human–computer interaction, and autonomy and self-determination. The review argues that three themes will be central to ongoing discussions and research by showing how they can be used to identify open questions related to the ethics of digital well-being. (shrink)

Chile has achieved great success in terms of growth and development. However, growing inequalities exist in relation to income and health status. The previous Chilean government began to reform the healthcare system with the aim of reducing health inequities. What is meant by “equity” in this context? What is the extent of the equity aimed for? A normative framework is required for public policy-makers to consider ideas about fairness in their decisions about healthcare reform. This paper aims to (...) discuss the main features of the Chilean healthcare reform and their implications for such a normative framework. (shrink)

Artificial intelligence and robotics is pervasive in daily life and set to expand to new levels potentially replacing human decision-making and action. Self-driving cars, home and healthcare robots, and autonomous weapons are some examples. A distinction appears to be emerging between potentially benevolent civilian uses of the technology (eg unmanned aerial vehicles delivering medicines), and potentially malevolent military uses (eg lethal autonomous weapons killing human com- batants). Machine-mediated human interaction challenges the philosophical basis of human existence and ethical conduct. (...) Aside from technical challenges of ensuring ethical conduct in artificial intelligence and robotics, there are moral questions about the desirability of replacing human functions and the human mind with such technology. How will artificial intelligence and robotics engage in moral reasoning in order to act ethically? Is there a need for a new set of moral rules? What happens to human interaction when it is mediated by technology? Should such technology be used to end human life? Who bears responsibility for wrongdoing or harmful conduct by artificial intelligence and robotics? -/- Whilst Kant may be familiar to international lawyers for setting restraints on the use of force and rules for perpetual peace, his foundational work on ethics provides an inclusive moral philosophy for assessing ethical conduct of individuals and states and, thus, is relevant to discussions on the use and development of artificial intelligence and robotics. His philosophy is inclusive because it incorporates justifications for morals and legitimate responses to immoral conduct, and applies to all human agents irrespective of whether they are wrongdoers, unlawful combatants, or unjust enemies. Humans are at the centre of rational thinking, action, and norm-creation so that the rationale for restraints on methods and means of warfare, for example, is based on preserving human dignity as well as ensuring conditions for perpetual peace among states. Unlike utilitarian arguments which favour use of autonomous weapons on the basis of cost-benefit reasoning or the potential to save lives, Kantian ethics establish non-consequentialist and deontological rules which are good in themselves to follow and not dependent on expediency or achieving a greater public good. -/- Kantian ethics make two distinct contributions to the debate. First, they provide a human-centric ethical framework whereby human exist- ence and capacity are at the centre of a norm-creating moral philosophy guiding our understanding of moral conduct. Second, the ultimate aim of Kantian ethics is practical philosophy that is relevant and applicable to achieving moral conduct. -/- I will seek to address the moral questions outlined above by exploring how core elements of Kantian ethics relate to use of artificial intelli- gence and robotics in the civilian and military spheres. Section 2 sets out and examines core elements of Kantian ethics: the categorical imperative; autonomy of the will; rational beings and rational thinking capacity; and human dignity and humanity as an end in itself. Sections 3-7 consider how these core elements apply to artificial intelligence and robotics with discussion of fully autonomous and human-machine rule-generating approaches; types of moral reasoning; the difference be- tween ‘human will’ and ‘machine will’; and respecting human dignity. (shrink)

Clinical Ethics Consultations are an important tool for physicians in solving difficult cases. They are extremely common in North America and to a lesser extent also present in Europe. However, there is little data on this practice in Poland. We present results of a survey of 521 physicians practising in Poland concerning their opinion on CECs and related practices. We analysed the data looking at such issues as CECs’ perceived availability, use of CECs, and perceived usefulness of such support. (...) Physicians in our study generally encounter hard ethics cases, even—surprisingly—those who do not work in hospitals. Most physicians have no CEC access, and those that do still do not employ CECs. However, physicians perceive this form of support as useful—even more so among actual users of CECs. We compared these findings with similar studies from other European countries and the North America. We point out peculiarities of our results as compared to those in other countries, with some possible explanations. We hope the results may encourage regulatory debate on the need to formally introduce CECs into the Polish healthcare system. (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)

While there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and their (...) broader implications for just and equitable healthcare delivery. (shrink)

We argue that while digital health technologies (e.g. artificial intelligence, smartphones, and virtual reality) present significant opportunities for improving the delivery of healthcare, key concepts that are used to evaluate and understand their impact can obscure significant ethical issues related to patient engagement and experience. Specifically, we focus on the concept of empowerment and ask whether it is adequate for addressing some significant ethical concerns that relate to digital health technologies for mental healthcare. We frame these concerns using (...) five key ethical principles for AI ethics (i.e. autonomy, beneficence, non-maleficence, justice, and explicability), which have their roots in the bioethical literature, in order to critically evaluate the role that digital health technologies will have in the future of digital healthcare. (shrink)

Peer commentary on Char, Abràmoff & Feudtner (2020) target article: "Identifying Ethical Considerations for Machine Learning Healthcare Applications" .

Every day nurses are required to make ethical decisions in the course of caring for their patients. Ethics in Nursing Practice provides the background necessary to understand ethical decision making and its implications for patient care. The authors focus on the individual nurse’s responsibilities, as well as considering the wider issues affecting patients, colleagues and society as a whole. This third edition is fully updated, and takes into account recent changes in ICN position statements, WHO documents, as well as (...) addressing current issues in healthcare, such as providing for the health and care needs of refugees and asylum seekers, bioethics and the enforcement of nursing codes. (shrink)

Traditional medical practices and relationships are changing given the widespread adoption of AI-driven technologies across the various domains of health and healthcare. In many cases, these new technologies are not specific to the field of healthcare. Still, they are existent, ubiquitous, and commercially available systems upskilled to integrate these novel care practices. Given the widespread adoption, coupled with the dramatic changes in practices, new ethical and social issues emerge due to how these systems nudge users into making decisions (...) and changing behaviours. This article discusses how these AI-driven systems pose particular ethical challenges with regards to nudging. To confront these issues, the value sensitive design approach is adopted as a principled methodology that designers can adopt to design these systems to avoid harming and contribute to the social good. The AI for Social Good factors are adopted as the norms constraining maleficence. In contrast, higher-order values specific to AI, such as those from the EU High-Level Expert Group on AI and the United Nations Sustainable Development Goals, are adopted as the values to be promoted as much as possible in design. The use case of Amazon Alexa's Healthcare Skills is used to illustrate this design approach. It provides an exemplar of how designers and engineers can begin to orientate their design programs of these technologies towards the social good. (shrink)

Several attempts have been made to apply the choice-sensitive theory of distributive justice, luck egalitarianism, in the context of health and healthcare. This article presents a framework for this discussion by highlighting different normative decisions to be made in such an application, some of the objections to which luck egalitarians must provide answers and some of the practical implications associated with applying such an approach in the real world. It is argued that luck egalitarians should address distributions of health (...) rather than healthcare, endorse an integrationist theory that combines health concerns with general distributive concerns and be pluralist in their approach. It further suggests that choice-sensitive policies need not be the result of applying luck egalitarianism in this context. (shrink)

Discrimination is an important real-life issue that affects many individuals and groups. It is also a fruitful field of study that intersects several disciplines and methods. This Special Section brings together papers on discrimination and prioritization in healthcare from leading scholars in bioethics and closely related fields.

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)

Ebola is a deadly disease with no cure; there is no vaccine developed yet. Many died during the 2014 outbreak in West Africa, and many healthcare professionals went to the virus infected area to treat the patients while placing their lives in danger. Not every medical professional placed in the field is a fully trained specialist, and sometimes one or two under-trained doctors are in charge of the entire clinic with some nurses and operating technicians. When unexpected outbreaks of (...) the virus occur in the places, the doctor(s) would encounter medical and ethical dilemmas. Should they leave or stay? In fact, this dilemma is not confined to the Ebola pandemic but relevant to all similar cases. In this paper, three authors, a medical resident, a clinical bioethicist, and a theoretical bioethicist respond to the dilemma. (shrink)

Eli Feiring has developed a concept of forward-looking responsibility in healthcare. On this account, what matters morally in the allocation of scarce healthcare resources is not people's past behaviours but rather their commitment to take on lifestyles that will increase the benefit acquired from received treatment. According to Feiring, this is to be preferred over the backward-looking concept of responsibility often associated with luck egalitarianism. The article critically scrutinises Feiring's position. It begins by spelling out the wider implications (...) of Feiring's view. Against this background, it shows that (i) Feiring's distinction between backward-looking and forward-looking responsibility is incompatible with the Scanlonian notion of responsibility she apparently endorses; (ii) her favoured forward-looking notion of responsibility is subject to the objections levelled against the luck egalitarian view (whatever the strength of such objections). (shrink)

Luck egalitarianism provides a reason to object to conditionality in health incentive programmes in some cases when conditionality undermines political values such as solidarity or inclusiveness. This is the case with incentive programmes that aim to restrict access to essential healthcare services. Such programmes undermine solidarity. Yet, most people's lives are objectively worse, in one respect, in non-solidary societies, because solidarity contributes both instrumentally and directly to individuals' well-being. Because solidarity is non-excludable, undermining it will deprive both the prudent (...) and the imprudent citizens of its goods. Thereby, undermining solidarity can make prudent citizens worse off than they would have otherwise been, out of no fault or choice of their own, but rather as a result of somebody else's imprudent choice. This goes against the spirit of luck egalitarianism. Therefore (luck egalitarian) justice can require us to save the imprudent and avoid conditionality in access to essential healthcare services. (shrink)

Techniques from behavioral economics—nudges—may help physicians increase pediatric vaccine compliance, but critics have objected that nudges can undermine autonomy. Since autonomy is a centrally important value in healthcare decision-making contexts, it counts against pediatric vaccination nudges if they undermine parental autonomy. Advocates for healthcare nudges have resisted the charge that nudges undermine autonomy, and the recent bioethics literature illustrates the current intractability of this debate. This article rejects a principle to which parties on both sides of this debate (...) sometimes seem committed: that nudges are morally permissible only if they are consistent with autonomy. Instead, I argue that, at least in the case of pediatric vaccination, some autonomy-undermining nudges may be morally justified. This is because parental autonomy in pediatric decision-making is not as morally valuable as the autonomy of adult patients, and because the interests of both the vaccinated child and other members of the community can sometimes be weighty enough to justify autonomy-infringing pediatric vaccination nudges. This article concludes with a set of worries about the effect of pediatric vaccination nudges on parent-physician relationships, and it calls on the American Academy of Pediatrics to draw on scientific and bioethics research to develop guidelines for the use of nudges in pediatric practice and, in particular, for the use of pediatric vaccination nudges. (shrink)

Christian Munthe, David Fumagalli and Erik Malmqvist argue that well-known healthcare resource allocation principles, such as need, prognosis, equal treatment and cost-effectiveness, should be supplemented with a principle of sustainability.1 Employing such a principle would entail that the allocation of healthcare resources should take into account whether a specific allocation causes negative dynamics, which would limit the amount of resources available in the future. As examples of allocation decisions, which may have such negative dynamics, they mention those who (...) cause a lack of vaccines, anti-bioethics resistance and drug shortages. Thus, the overall thought is that we can spend and allocate healthcare resources in a certain way at t1, which means that we will have fewer resources available at a later point, t2. The authors argue that we should include a principle of sustainability to justify allocations, which avoids or diminishes the negative dynamics. The authors argue that existing principles cannot sufficiently include proper regard for how our current decisions affect future allocation decisions and, therefore, the people who need healthcare resources in the future. I am sympathetic to the developed argument and believe that the authors are correct that negative dynamics provide reasons to take our ability to meet future health needs …. (shrink)

Technological developments involving robotics and artificial intelligence devices are being employed evermore in elderly care and the healthcare sector more generally, raising ethical issues and practical questions warranting closer considerations of what we mean by “care” and, subsequently, how to design such software coherently with the chosen definition. This paper starts by critically examining the existing approaches to the ethical design of care robots provided by Aimee van Wynsberghe, who relies on the work on the ethics of care (...) by Joan Tronto. In doing so, it suggests an alternative to their non-principled approach, an alternative suited to tackling some of the issues raised by Tronto and van Wynsberghe, while allowing for the inclusion of two orientative principles. Our proposal centres on the principles of autonomy and vulnerability, whose joint adoption we deem able to constitute an original revision of a bottom-up approach in care ethics. Conclusively, the ethical framework introduced here integrates more traditional approaches in care ethics in view of enhancing the debate regarding the ethical design of care robots under a new lens. (shrink)