The authors interpret the data to mean that patients think that their physicians should make relevant decisions in Learning Health System based trials, and label that as being of 'utmost importance'. However, the patients themselves (in the excerpts provided) emphasize that trust in physicians is instrumental for obtaining protection of patient's bests interests (which seems to be of utmost importance for patients). Furthermore, the perceived bias regarding outcome certainty deserves more discussion. Namely, the decision to defer to physician's opinion (...) is linked to perceived certainty of best clinical outcomes and instrumental for protection of best interest, while it lacks appreciation of the level of uncertainty that exists in clinical decision-making. Finally, a discussion on what are the implications of patient perspectives for individual, vs. relational autonomy is something the authors don't pursue, but instead use "physician-patient autonomy" throughout the paper. (shrink)

In elder care, “safety” is frequently accorded overriding moral priority. As a result, restrictive measures introduced under the banner of risk prevention are readily treated as “reasonable protection,” while, under the guise of care, they can encroach on older persons’ freedom, privacy, and dignity. The expansion of digital care technologies reinforces logics of continuous monitoring and alerting, thereby intensifying this tension. Existing debates often remain confined to an “autonomy versus beneficence” framing or to compliance-oriented privacy governance, and (...) thus struggle to specify clear boundary conditions. Grounded in care ethics and relational autonomy, this article conceptualizes such practices as “benevolent coercion” and develops a Relational Legitimacy Framework (RLF). The RLF treats restrictive measures as normative actions that carry a burden of justification and requires that they meet, simultaneously, risk-grounded necessity and proportionality; relationally defined, minimally intrusive alternatives; relational procedural legitimacy, including the identification of false consent and the possibility of withdrawal; and non-negotiable baseline protections for dignity and privacy. It further emphasizes time-limited reassessment and viable exit mechanisms. The Chinese context serves as a setting in which underlying mechanisms become especially visible, allowing assessment of the risk that key conditions may fail in practice. This article contributes a reusable normative braking system for safety-based justifications and offers a theoretical foundation and practical guidance for nurses and institutions to integrate restrictive measures into actionable ethical decision-making procedures and governance rules. (shrink)

The coronavirus (COVID-19), an infectious disease caused by the SARS-CoV-2 virus, emerged in China in late 2019 and rapidly evolved into a global pandemic. As of June 2024, the World Health Organization (WHO) has reported over 770 million confirmed cases and more than 7 million deaths worldwide. Kenya has also faced significant impacts, recording over 340,000 confirmed cases and more than 5500 deaths, with millions of vaccine doses administered. Beyond the immediate health crisis, the pandemic has triggered widespread human, economic, (...) and social disruptions.The COVID-19 pandemic necessitated unprecedented public health measures, which have posed significant ethical challenges, particularly regarding the balance between individual autonomy and the public good. This chapter explores the tension between individual rights and public health mandates, such as quarantine and vaccination requirements, assessing whether the restriction of personal autonomy can be ethically justified for the greater public good. It critically examines the ethical principles of autonomy, beneficence, nonmaleficence, and justice, and how these are applied in public health emergencies. Key sections of the chapter delineate the problem of limited autonomy versus the necessity of collective health measures, and the ethical justifications for restricting personal freedoms to prevent harm and protect public health are discussed. The role of informed consent is scrutinized, particularly where traditional consent models are challenged by urgent public health needs. Ultimately, this chapter argues for a nuanced understanding of autonomy in healthcare, advocating for policies that respect individual rights while acknowledging the ethical imperative to safeguard the health of the broader community. It underscores the importance of clear communication, trust-building, and equitable public health measures to navigate the complex ethical landscape of the COVID-19 pandemic. (shrink)

Over the past three decades more than 200 children have died in the U.S. of treatable illnesses as a result of their parents relying on spiritual healing rather than conventional medical treatment. Thirty-nine states have laws that protect parents from criminal prosecution when their children die as a result of not receiving medical care. As physicians and citizens, we must choose between protecting the welfare of children and maintaining respect for the rights of parents to practice the religion of their (...) choice and to make important decisions for their children. In order to make and defend such choices, it is essential that we as health care professionals understand the history and background of such practices and the legal aspects of previous cases, as well as formulate an ethical construct by which to begin a dialogue with the religious communities and others who share similar beliefs about spiritual healing. In this paper, we provide a framework for these requirements. (shrink)

Registered nurses in psychiatric-mental health nursing continuously balance the ethical principles of duty to do good (beneficence) and no harm (non-maleficence) with the duty to respect patient choices (autonomy). However, the problem of nurses’ level of control versus patients’ choices remains a challenge. The aim of this article is to discuss how nurses accomplish their simultaneous responsibility for balancing patient safety (beneficence and non-maleficence) with patient choices (autonomy) through the theory of protective empowering. This is done by (...) reflecting on interview excerpts about caring from 17 registered nurses taking part in a grounded theory study conducted in three acute urban psychiatric hospital settings in Canada. The interplay between the protective and empowering dimensions of the theory of protective empowering was found to correspond with international, national, and local nursing codes of ethics and standards. The overall core process of protective empowering, and its associated reflective questions, is offered as a new lens for balancing patient safety with choices. (shrink)

Due to the rise of functional foods,the distinction between foods and medicines hasbecome increasingly blurred. A new EUregulation covering health claims and otherclaims on food and drink products is on thedocks. A basic motive of legal regulation oflabeling and advertising is to inform andprotect the consumer. Promotion of informedchoice and consumer protection may, however, beconflicting objectives. A further problemsprings from the fact that choice, likeconsent, is a propositional attitude andtherefore opaque. Thus it is extremelydifficult for regulators to fasten onparticular (...) formulations of claims. Despite theprofessed respect for the autonomy of theconsumer, paternalism is never far away andeasily enters in various guises. (shrink)

As part of a special issue on the intersection between bioethics and political philosophy, I argue that strong intuitions about how the state ought to allocate healthcare are incompatible with quite influential autonomy-centric and neutral strains of liberal political theory. Specifically, I maintain that it is uncontroversial that we should routinely distribute medical treatments in public hospitals in ways that have little to no bearing on patients’ ability to pursue a wide array of ends and further that we cannot (...) easily avoid making judgments of which ways of life are good (or bad) when making such distributions. These intuitions tell against the principles that the state in general should aim merely to protect individuals’ rights to choose their own ways of life and should not take sides on which lives are good (or bad) when adopting policy or law. I show that this tension, which has not been thoroughly addressed in the literature, manifests in at least three types of healthcare decisions, viz., which types of treatments should be offered to patients, how to prioritize among types of treatments, and who should receive a certain type of treatment. I do not prescribe how to resolve the tension, that is, whether to reject autonomy-centric and neutral forms of liberalism or revise judgments about how public medical facilities should allocate healthcare, but instead establish the point that one must choose between them. (shrink)

Background Providing understandable information to patients is necessary to achieve the aims of the Informed Consent process: respecting and promoting patients’ autonomy and protecting patients from harm. In recent decades, new, primarily digital technologies have been used to apply and test innovative formats of Informed Consent. We conducted a systematic review to explore the impact of using digital tools for Informed Consent in both clinical research and in clinical practice. Understanding, satisfaction and participation were compared for digital tools (...) class='Hi'>versus the non-digital Informed Consent process. Methods We searched for studies on available electronic databases, including Pubmed, EMBASE, and Cochrane. Studies were identified using specific Mesh-terms/keywords. We included studies, published from January 2012 to October 2020, that focused on the use of digital Informed Consent tools for clinical research, or clinical procedures. Digital interventions were defined as interventions that used multimedia or audio–video to provide information to patients. We classified the interventions into 3 different categories: video only, non-interactive multimedia, and interactive multimedia. Results Our search yielded 19,579 publications. After title and abstract screening 100 studies were retained for full-text analysis, of which 73 publications were included. Studies examined interactive multimedia, non-interactive multimedia, and videos, and most studies were conducted on adults. Innovations in consent were tested for clinical/surgical procedures and clinical research. For research IC, 21 outcomes were explored, with a positive effect on at least one of the studied outcomes being observed in 8/12 studies. For clinical/surgical procedures 49 outcomes were explored, and 21/26 studies reported a positive effect on at least one of the studied outcomes. Conclusions Digital technologies for informed consent were not found to negatively affect any of the outcomes, and overall, multimedia tools seem desirable. Multimedia tools indicated a higher impact than videos only. Presence of a researcher may potentially enhance efficacy of different outcomes in research IC processes. Studies were heterogeneous in design, making evaluation of impact challenging. Robust study design including standardization is needed to conclusively assess impact. (shrink)

The author's goal in this article is to develop an argument for why women should have a right to abortion-as-termination even if some form of ectogenesis is created. First, the author shows why ectogenesis as an alternative to abortion does not protect women's bodily autonomy because women are being forced to submit to coerced medical treatment and perform reproductive labor for others. Second, the author considers a further implication of her argument: If abortion-as-termination is kept, how far into gestation (...) should this right extend? Third, and finally, the author considers whether people have the right to refuse genetic parenthood. (shrink)

Human capital, the knowledge, skills, and abilities of employees, can be a powerful driver of firm performance, yet the mobility of human capital raises questions over how to protect it. Employee non-compete agreements, which limit an employee’s ability to start or join a rival firm, have received recent attention. While past research considers whether non-competes are effective tools at limiting employee mobility, few have considered if non-competes should be used. Filling this gap, I propose a normative schema for when employee (...) non-competes can be considered ethical. A review of the limited existing literature on the ethics of employee non-competes finds that prior research has mostly focused on questions of property rights, which I propose as being nested within other ethical constructs. Analysis of two real-world illustrative examples of employee non-competes leads to a three-prong approach to evaluating non-competes based on ethical dimensions of power, autonomy, and fairness. I end by proposing—although further research is warranted—a measure of employee-level absorptive capacity, which is closely coupled with an employee’s pre-employment human capital, as an employee-level attribute independent of, although likely coincidental with, the tripartite requirements of power/autonomy/fairness for ethical employee non-compete agreements. (shrink)

The increase in life expectancy in developed countries has lead to an increase in the number of elderly people cared for in nursing homes. Given the physical frailty and deterioration of mental capacities in many of these residents, questions arise as to their autonomy and to their protection from harm. In 2005, one of the highest German courts, the Bundesgerichtshof issued a seminal judgement that dealt with the obligations of nursing homes and with the preserving of autonomy (...) and privacy in nursing home residents. An elderly woman had sustained a fracture of the neck of the femur during a fall. The health insurance company held that the nursing home had breached its obligations to protect her from falling and sued the home for the hospital costs of her treatment. However, the BGH maintained that the case of the health insurance was not justified. It held that obligations of nursing homes have to be limited to normal arrangements within reasonable financial and personal effort, and that the autonomy of residents had to be protected from unnecessary interference. Permanent control or even restraining measures to reduce each risk would deprive the patient fully of her autonomy, and must therefore be hindered. Other judgments of other courts have emphasised the “protectionist” approach. The article deals with these different approaches and comments on both rationales. It will be shown that both approaches must be differentiated to establish fully autonomy and protection for nursing home residents. (shrink)

The particular dynamics of public health emergencies urge scientists and Ethics Committee (EC) members to change and adapt their operating procedures to function effectively. Despite having previous pandemic experiences, ethics committees were unprepared to adapt to COVID-19 pandemic challenges. This survey aims to learn and thoroughly discuss the most salient issues for ECs during the COVID-19 pandemic. The results indicate that the main problems faced by ECs were lack of/insufficient regulations, lack of data/experience/knowledge, sloppy review, poor research design, and poor (...) adaptation to quarantine measures. Coping with factors that threaten the autonomy and independence of ECs, the ethical dilemma regarding maximizing common good versus protecting the rights and well-being of study participants, comprehending the change in the context of vulnerable populations, and redefining the role of ECs to strengthen trust in science and vaccine confidence were outstanding issues. (shrink)

Human beings with diminished decision-making capacities are usually thought to require greater protections from the potential harms of research than fully autonomous persons. Animal subjects of research receive lesser protections than any human beings regardless of decision-making capacity. Paradoxically, however, it is precisely animals’ lack of some characteristic human capacities that is commonly invoked to justify using them for human purposes. In other words, for humans lesser capacities correspond to greater protections but for animals the opposite is true. Without explicit (...) justification, it is not clear why or whether this should be the case. Ethics regulations guiding human subject research include principles such as respect for persons—and related duties—that are required as a matter of justice while regulations guiding animal subject research attend only to highly circumscribed considerations of welfare. Further, the regulations guiding research on animals discount any consideration of animal welfare relative to comparable human welfare. This paper explores two of the most promising justifications for these differences␣between the two sets of regulations. The first potential justification points to lesser moral status for animals on the basis of their lesser capacities. The second potential justification relies on a claim about the permissibility of moral partiality as␣found in common morality. While neither potential justification is sufficient to justify the regulatory difference as it stands, there is possible common ground between supporters of some regulatory difference and those rejecting the current difference. (shrink)

This article investigates the contradictions between public health protocols and infection containment efforts concerning Zika virus and reproductive rights. In El Salvador, for example, women are being advised to avoid pregnancy until 2018, at which time local authorities hope that the virus will be under control. This is not so easy, however, as there is limited access to contraception, abortion is illegal in all instances, and women tend to have little household authority. In this article, I examine the policy, legal, (...) and political contradictions related to the global proliferation of Zika virus in the context of ongoing debates about stratified reproduction. This term conceptualizes the phenomenon that accords different values to reproductive tasks undertaken by women in different socioeconomic, cultural, and national contexts. Whereas reproduction and reproductive autonomy tend to be highly respected and protected for relatively privileged women in the Global North, they tend to be much less so for women of the Global South. Furthermore, the adherence to public and private divisions in both national and transnational contexts segregates reproductive rights from the mainstream of political negotiation and public health intervention, and in doing so frustrates progress toward the realization of global reproductive rights. (shrink)

Ethical dilemmas in community mental health care is the focus of this article. The dilemmas are derived from a discussion of the results of a qualitative research project that took place in five countries of the European Union. The different stakeholders are confronted with the following dilemmas: community care versus hospital care ; a life with care versus a life without care ; stimulation of the client toward greater responsibility versus protection against such responsibility ; budgetary (...) control versus financial incentives, and respect for the client versus particular private needs. These dilemmas are interpreted against the background of a value based ethical model. This model offers an integral approach to the dilemmas and can be used to determine policy. The dilemmas are discussed here as the result of conflicting values—namely autonomy and privacy, support and safety, justice and participation, and trust and solidarity. (shrink)

Dignity is an important concept in ethics. Human rights organizations justify rights by appealing to human dignity. Prominent politicians have cited the need to protect human dignity and urged the founding of international institutions. The concept of human dignity is often used to evaluate and critique the ethics of select practices. In addition, the idea of dignity is used as a universal principle to ground universalist business ethics.This paper argues that there are substantial differences between the ways in which the (...) West and China construe human dignity. Having documented these major differences, we consider two cases to show how the differences might “cash out” in actual business practice. Instead of relying upon a nonexistent universal concept of human dignity, we suggest that it is respectful and sound to seek to identify the many goods (teamwork, initiative, autonomy, respect for elders) that differing parties see at play in the case at hand and then to try to come up with ways to realize as many of these goods as possible. (shrink)

The conflict between legal requirements and the principles of care ethics is one of the fundamental challenges in healthcare settings. Such conflicts can lead to moral distress, emotional exhaustion, and a crisis of professional identity among healthcare staff. This study aimed to identify and explain the dimensions and consequences of these conflicts in a hospital nursing care. This research employed thematic synthesis of qualitative studies. A systematic search was conducted in reputable national and international databases for studies published between 2010 (...) and 2025. Of the retrieved literature, 15 qualitative studies were included that examined legal–ethical conflicts in hospital settings. Data were synthesized through open coding, axial categorization, and the development of analytical themes. Four overarching themes and twelve subthemes emerged: (1) Patient autonomy versus legal protection, (2) Organizational directives and resource allocation versus moral duty of care, (3) Defensive documentation versus ethical transparency, and (4) Hierarchy, inequality, and professional silence versus justice and integrity. These tensions frequently led to moral distress, erosion of professional identity, and emotional strain among healthcare professionals. Legal–ethical conflicts deeply affect both caregivers and institutional cultures. Mitigating their impact requires coordinated reforms: integrating ethics education and decision-making training into nursing curricula, revising legal frameworks to allow greater contextual flexibility, and establishing psychosocial and ethical support systems for staff exposed to recurring moral tensions. Such multi-level strategies can bridge the gap between law and moral care, fostering ethical coherence, professional sustainability, and trust within healthcare systems. (shrink)

During preparation for early abortion in Norway, an ultrasound examination is usually performed to determine gestation and viability. This article aims to provide a deeper understanding of women’s and health care personnel’s (HCP) experiences with ultrasound viewing during abortion preparation in the first trimester. Qualitative in-depth interviews with women who had been prepared for early abortion and focus group interviews with HCP from gynaecological units were carried out. A hermeneutic-phenomenological analysis, inspired by van Manen, was chosen. Thirteen women who were (...) pregnant and considering abortion in their first trimester and 20 HCP, namely, 19 registered nurses and one medical doctor, were recruited from gynaecological units at six hospitals. The study was approved by the ethics committee (2014/1276). The essential meaning structure of ‘autonomy under pressure’ consisted of two themes that expressed the different experiences of both the women and the HCP, namely, expectations versus precautions and choice versus protection. The women and HCP expressed different attitudes before the consultation that affected their experiences of the ultrasound examination. While the women had expectations of a clarification based on their choice to either see or not see the ultrasound image, HCP seemed to be more concerned with predetermined rules that they believed would protect the women. Consequently, the basis for dialogue was not optimal, and women’s autonomy was under pressure. Health care personnel are ethically challenged during preabortion ultrasound examinations. Meeting the individual woman’s needs and respecting her autonomy during preparation for abortion requires sensitivity, involvement, and dialogue skills by health personnel. According to the woman’s desire to be informed about the possibility of viewing the image during the abortion preparations, a dialogue that is focused in this direction should arise before the examination. (shrink)

Background and rationaleWhen deception is used, a conflict ensues between the need to use it to answer a research question scientifically whilst protecting the participants’ autonomy simultaneously...

Kögel et al propose a multicriteria alternative to the standard early clinical selection method for xenotransplantation trials. As they note, existing recommendations for inclusion criteria indicate that only the most seriously ill—those lacking any viable alternative—should be considered for xenotransplantation. Rather than basing selection on, to put it indelicately, a Hail Mary in the face of certain death, Kögel et al recommend a selection system based on four ethical criteria: medical need, capacity to benefit, patient choice and compliance (the latter (...) being an exclusion criterion). Taken together, they paint a picture of an ethically ideal first-in-human xenotransplantation clinical trial participant: someone ‘in need of a heart replacement with a good capacity to benefit from a xenotransplantation who [has] a choice in terms of alternative potentially life-sustaining treatment options.’1 In other words, they argue that potential xenotransplantation organ recipients (they specify heart, but said criteria would apply to any vital organ recipient) should not be facing their imminent demise as this would inherently constrain that person’s freedom of choice, thus rendering them vulnerable. Instead, Kögel et al argue that trial participants should be selected from groups possessing genuine alternatives to xenotransplantation but opt to receive an animal organ. Now, their concern regarding the presence of coercion in the context of what is an experimental medical intervention is fully justified, as is their claim that those facing limited viable choices at the end of their lives are an inherently vulnerable population. Autonomy and consent are largely uncontroversial bedrocks on which most medical and research ethics theories are built. We are, all of us, familiar with the horrors from history—both distant and recent—where participant consent has taken …. (shrink)

There has been an increase in the number of jurisdictions legalizing or decriminalizing Medical Assistance in Dying (MAiD). Legal frameworks worldwide strive to balance respect for autonomy with regulatory safeguards that both operationalize voluntary choice and prevent access to MAiD in cases of remediable despair or coerced decision‐making. However, the implementation of such an equilibrium diverges. Some legal systems prioritize personal autonomy and informed consent as the main criterion to access MAiD (e.g., US jurisdictions), while others also add (...) the alleviation of suffering (e.g., The Netherlands). Using the lens of relational autonomy and focusing on Spain's MAiD legislation as a case study, this article poses the question of what notion of autonomy is implied in this system, and whether the imposition of certain safeguards might inadvertently undermine or restrict autonomy, in some specific cases. To that aim, we first analyze its stringent requirements for assessing the so‐called “euthanasic context” which establishes eligibility conditions to access MAiD; then, we highlight how some of its assessments can interfere with the person's autonomy. The analysis highlights how protective measures (e.g., three external assessments before the request is either granted or denied) may imply forms of pathogenic vulnerability, in which safeguards meant to protect autonomy could paradoxically heighten an individual's vulnerability while diminishing autonomy through forms of epistemic injustice. We conclude that these highly protective laws might fall into the “trap of protection,” illustrating the tension between safeguarding autonomy and respecting individuals’ capacity for self‐determination in the context of MAiD. (shrink)

Artificial intelligence (AI) is increasingly entangled with teachers’ daily labor – from learning management systems and adaptive platforms to generative assistants and algorithmic evaluations. Drawing on Marx’s theory of alienation and labor process theory, this chapter examines how AI reconfigures teachers’ autonomy, authorship, practical wisdom, and relations with students and institutions. I develop an analytic framework that maps four forms of alienation (from product, process, others, and self) to common AI uses in schools and universities. Using illustrative vignettes from (...) recent studies and policy cases, I show how AI can both intensify control through performance dashboards, scripted curricula, and automated surveillance, and enable craft restoration via planning support, differentiation at scale, and accessible feedback. To move beyond the binary of automation versus augmentation, I propose design and governance principles – transparency, contestability, situated consent, professional oversight, and teacher-led evaluation – that center pedagogical judgment. Overall, I argue that responsible AI in education is not simply a matter of technical accuracy or fairness but of protecting teachers’ capacity to care, create, and exercise discretion. (shrink)

The current research tested the idea that it is the cultural fit of emotions, rather than certain emotions per se, that predicts psychological well-being. We reasoned that emotional fit in the domains of life that afford the realization of central cultural mandates would be particularly important to psychological well-being. We tested this hypothesis with samples from three cultural contexts that are known to differ with respect to their main cultural mandates: a European American ( N = 30), a Korean ( (...) N = 80), and a Belgian sample ( N = 266). Cultural fit was measured by comparing an individual’s patterns of emotions to the average cultural pattern for the same type of situation on the Emotional Patterns Questionnaire ( De Leersnyder et al., 2011 ). Consistent with our hypothesis, we found evidence for “universality without uniformity”: in each sample, psychological well-being was associated with emotional fit in the domain that was key to the cultural mandate. However, cultures varied with regard to the particular domain involved. Psychological well-being was predicted by emotional fit (a) in autonomy-promoting situations at work in the U.S., (b) in relatedness-promoting situations at home in Korea, and (c) in both autonomy-promoting and relatedness-promoting situations in Belgium. These findings show that the experience of culturally appropriate patterns of emotions contributes to psychological well-being. One interpretation is that experiencing appropriate emotions is itself a realization of the cultural mandates. (shrink)

Pre-commitment directives or Ulysses contracts are often defended as instruments that may strengthen the autonomous self-control of episodically disordered psychiatric patients. Autonomy is understood in this context in terms of sovereignty ("governing" or "managing" oneself). After critically analyzing this idea of autonomy in the context of various forms of self-commitment and pre-commitment, we argue that what is at stake in using Ulysses contracts in psychiatry is not autonomy as sovereignty, but autonomy as authenticity. Pre-commitment directives do (...) not function to protect autonomous self-control. They serve in upholding the guidance that is provided by one's deepest identity conferring concerns. We elucidate this concept of autonomy as authenticity, by showing how Ulysses contracts protect the possibility of being "a self.". (shrink)

Over the last decade, several European countries and the Council of Europe itself have strongly supported the use of advance directives as a means of protecting patients’ autonomy, and adopted specific norms to regulate this matter. However, it remains unclear under which conditions those regulations should apply to people who are placed in correctional settings. The issue is becoming more significant due to the increasing numbers of inmates of old age or at risk of suffering from mental disorders, all (...) of whom might benefit from using advance directives. At the same time, the closed nature of prisons and the disparate power relationships that characterise them mean that great caution must be exercised to prevent care being withdrawn or withheld from inmates who actually want to receive it. This paper explores the issue of prisoners’ advance directives in the European context, starting with the position enshrined in international and European law that prisoners retain all their human rights, except the right to liberty, and are therefore entitled to self-determination regarding health care decisions. (shrink)

This book, written both for a Canadian and an international readership, provides a multidisciplinary review of the framework and performance of the Canadian Medical Assistance in Dying (MAID) program. In the first five years (2015-2021) of operation, this program delivered voluntary euthanasia and assistance in suicide to over 30,000 Canadian residents, presently representing a 30% annual growth. Looking back on these first five years, the 30 Canadian scholars and clinicians contributing to this volume raise important issues and attempt to answer (...) key questions that have arisen in regards to its operation and its stated objectives. This volume strikes the most appropriate balance between the autonomy of persons who seek medical assistance, versus the interests and protection of vulnerable persons. Finally, the book makes suggestions on how the program can presently be improved. It identifies gaps in knowledge about MAID’s operational program and its impact on individuals, families and society in order to stimulate the necessary research that is essential to the evolution of a healthy and well-balanced program. As a first, comprehensive examination of medically assisted deaths in Canada, this publication will be of great value to lay, professional, academic, political audiences both domestically and internationally, especially in jurisdictions that are examining their options of permitting assisted deaths. (shrink)

The world famous Eltroxin saga of 2009–2011, which ignited heated public debates in Europe, Canada, and Australia, reveals the problematic nature of standalone autonomy protection cases. Eltroxin is a life-sustaining thyroid hormone replacement medicine used by millions worldwide; it was reformulated in 2008, and around 10% of patients were badly affected. Poor communication and lack of professional information triggered public hysteria as a global wave of complaints about harmful side effects, including hair loss, weight gain, extreme fatigue, headaches, (...) diarrhoea, and heightened heart rates, flooded the media. Israeli Eltroxin users (around 250 thousand people) were similarly unaware. Following many media reports and ministerial regulations, a high-profile consumer class action was launched against Perrigo, the distributor. Ten years of court proceedings culminated in a compensation settlement of approximately US$ 14 million. This relatively low sum covered the injuries of those patients who were physically affected; compensation for standalone autonomy injuries to all patients (who were denied information about changes to their life-sustaining medicine) was refused. The monetary settlement and court decision were hugely disappointing to the class plaintiffs, and a negative signal was sent to the proponents of consumers' and patients' personal autonomy. However, the class action still marked a positive change in pharmaceutical protocols for relations between health authorities, commercial pharmacy entities, and patients/consumers as seen by the proactive communication around a subsequent Eltroxin reformulation in 2020 in Israel, Europe, and South Africa (Aspen Pharmacare, 2020).1 This paper highlights the vast potential value of consumer class action proceedings, and pharmaceutical consumer (patient) class actions in particular, for public welfare and private autonomy. The paper will explain leading Israeli case law related to consumer autonomy protection in tort law and will argue that this law still holds the unique protection of autonomy as a basic human right and accordingly recognises harm to autonomy as a viable form of damage. Additionally, it illustrates why and how consumer protection class actions are an important tool for protection of human rights in general and of patients' rights in particular. (shrink)

The right of adults with sound mind to consent to treatment or risk their own health for the benefit of the community in a clinical trial is unequivocally recognised by the law. But what about those vulnerable by virtue of their age, nature or position in society? Experts from the fields of medicine, philosophy, theology and law, explore the ethical and legal principles which seek to reconcile the individual's right to autonomy with the need to protect vulnerable groups. Discussions (...) refer both to specific groups (premature babies, children, people with mental handicaps) and specific issues (cases of abuse by sterilization of women, suicide, the right to information). (shrink)

BackgroundBesides balancing burdens and benefits of intensive care, ethical conflicts in the process of decision-making should also be recognised. This calls for an ethical analysis relevant to clinicians. The aim was to analyse ethically difficult situations in the process of deciding whether a patient is admitted to intensive care unit.MethodsAnalysis using the ‘Dilemma method’ and ‘wide reflective equilibrium’, on ethnographic data of 45 patient cases and 96 stakeholder interviews in six UK hospitals.Ethical analysisFour moral questions and associated value conflicts were (...) identified. Who should have the right to decide whether a patient needs to be reviewed? Conflicting perspectives on safety/security. Does the benefit to the patient of getting the decision right justify the cost to the patient of a delay in making the decision? Preventing longer-term suffering and understanding patient’s values conflicted with preventing short-term suffering and provision of security. To what extent should the intensivist gain others’ input? Professional independence versus a holistic approach to decision-making. Should the intensivist have an ongoing duty of care to patients not admitted to ICU? Short-term versus longer-term duty to protect patient safety. Safety and security were key values at stake in the ethical conflicts identified. The life-threatening nature of the situation meant that the principle of autonomy was overshadowed by the duty to protect patients from harm. The need to fairly balance obligations to the referred patient and to other patients was also recognised.ConclusionProactive decision-making including advance care planning and escalation of treatment decisions may support the inclusion of patient autonomy. However, our analysis invites binary choices, which may not sufficiently reflect reality. This calls for a complementary relational ethics analysis. (shrink)

Robots are slowly, but certainly, entering people's professional and private lives. They require the attention of regulators due to the challenges they present to existing legal frameworks and the new legal and ethical questions they raise. This paper discusses four major regulatory dilemmas in the field of robotics: how to keep up with technological advances; how to strike a balance between stimulating innovation and the protection of fundamental rights and values; whether to affirm prevalent social norms or nudge social (...) norms in a different direction; and, how to balance effectiveness versus legitimacy in techno-regulation. The four dilemmas are each treated in the context of a particular modality of regulation: law, market, social norms, and technology as a regulatory tool; and for each, we focus on particular topics? such as liability, privacy, and autonomy? that often feature as the major issues requiring regulatory attention. The paper then highlights the role and potential of the European framework of rights and values, responsible research and innovation, smart regulation and soft law as means of dealing with the dilemmas. (shrink)

Criminal juries in the United States typically deliver their decisions through a “general verdict,” expressing only their ultimate conclusion of “guilty” or “not guilty,” rather than through a “special verdict” that identifies whether each element of the charged crime has been proven beyond a reasonable doubt. American courts have broadly favored the use of general verdicts in criminal cases due to concerns that the special verdict will curtail the jury’s decision-making autonomy, including its power to nullify the law in (...) favor of the defense, potentially undermining the criminal defendant’s constitutional right to trial by jury. This Article confronts the legal status quo on verdict format and its underlying, untested assumptions. Drawing upon prior psychology findings and legal professionals’ anecdotal observations, it questions whether the general verdict poses its own under-acknowledged threats to the rights of criminal defendants and the decision-making agency of jurors. While the more guided special verdict format is presumed to threaten nullifying acquittals, the unguided general verdict format might be enabling convictions that violate constitutional norms of due process, impartial adjudication, and equal protection. Given the high-stakes values potentially implicated in the choice of verdict format in criminal cases, it is time to put the conventional wisdom in favor of general verdicts to an empirical test. This Article therefore proposes a methodological framework for investigating whether the legal status quo accurately reflects (1) current stakeholders’ preferences and predictions, and (2) experimentally testable legal and cognitive effects of general versus special verdicts in lay determinations of criminal liability. A data-informed understanding is needed to assess whether the general verdict is optimizing the integrity, fairness, and constitutionality of criminal jury decision making. (shrink)

Background Since the beginning of the COVID-19 pandemic, different countries sought to manufacture and supply effective vaccines to control the disease and prevent and protect public health in society. The implementation of vaccination has created many ethical dilemmas for humans, which must be recognized and resolved. Therefore, the present study was conducted to analyze the ethical considerations in vaccination against COVID-19 from the perspective of service providers. Methods The present qualitative research was conducted in 2022 in the north of Iran. (...) The participants included 23 health workers with at least five years of work experience and members of the COVID-19 vaccination team. The data were initially collected through systematic semi-structured interviews, then snowball sampling and finally continued until data saturation. The next steps were transcription of interviews, identification of meaning units, coding, categorization based on similarity and symmetry, extraction of themes and the analysis of themes through content analysis. Results The analysis of participants’ experiences led to the extraction of five main categories of themes and fifteen sub-categories of the ethical considerations of COVID-19 vaccination. Safe and standard vaccine production, vaccine supply, fairness, respect for autonomy, and accountability were the main categories. The subcategories included compliance with scientific and ethical procedures, effectiveness and profitability of vaccine, absence of severe adverse effects, allocation of resources for vaccine supply, vaccine availability, diversity and comprehensiveness of alternative vaccines, vaccination prioritization, prioritization of the vulnerable populations of society, autonomy of patient (equal rights), autonomy of community, autonomy of service providers, reporting correct information, reporting vaccine side effects, public trust and acceptance. Conclusion The health system managers should be adequately prepared to solve the ethical problems posed by COVID-19 vaccination. Therefore, it is recommended to avoid haste in vaccination and pay more attention to vaccination safety standards, provide sufficient resources for a comprehensive vaccine supply, pay close attention to collective interests versus individual interests, and meet community needs. (shrink)

Lainie Ross presents a rigorous critical investigation of the development of policy governing the involvement of children in medical research. She examines the shift in focus from protection of medical research subjects, enshrined in post-World War II legislation, to the current era in which access is assuming greater precedence. Infamous studies such as Willowbrook (where mentally retarded children were infected with hepatitis) are evidence that before the policy shift protection was not always adequate, even for the most vulnerable (...) groups. Additional safeguards for children were first implemented in many countries in the 1970s and 1980s; more recent policies and guidelines are trying to promote greater participation. Ross examines whether the safeguards work, whether they are fair, and how they apply in actual research practice, and she offers specific recommendations to modify current policies and guidelines. (shrink)

Não apenas distantes no tempo, Kant e Levinas são distantes em suas respectivas propostas de ética. Este trabalho visa analisar reflexivamente os princípios morais dos dois autores com o intuito de introduzir o acadêmico aos conceitos fundamentais em dois grandes expoentes da ética. Desta forma, Kant propõe uma moral baseada na razão (pura prática), livre de toda inclinação sensível. Nada alheio a razão pode fundar uma lei. Por conseguinte, o único princípio da determinação da vontade é a lei moral, de (...) forma que ser moral é ser racional. Logo, na medida em que as máximas do agir concordarem com a lei moral expressa no imperativo categórico tem-se uma ação com valor moral. Levinas, por sua vez, faz uma crítica a toda à tradição ética pelo fato de ter subjugado o outro ao Eu. Na tradição o outro foi reduzido a “objeto”, a conceito. Por isso, para Levinas, a ética é filosofia primeira, na qual afirma que o outro interpela e causa irrecusavelmente responsabilidade por ele. Tal responsabilidade é fundada antes mesmo do sujeito se constituir como Eu consciente. Logo, o rosto do outro é um mandamento que exige minha responsabilidade. (shrink)

Despite substantial controversy, the use of futility judgments in medicine is quite common, and has been backed by the implementation of hospital policies and professional guidelines on medical futility. The controversy arises when health care professionals (HCPs) consider a treatment futile which patients or families believe to be worthwhile: should HCPs be free to refuse treatments in such a case, or be required to provide them? Most physicians seem convinced that professional autonomy protects them from being forced to provide (...) treatments they judge medically futile, given the lack of patient benefit as well as the waste of medical resources involved. The argument from professional autonomy has been presented in a number of articles, but it has not been subjected to much critical scrutiny. In this paper I distinguish three versions of the argument: 1) that each physician should be free to exercise his or her own medical judgment; 2) that the medical profession as a whole may provide futility standards to govern the practice of its members; and 3) that the moral integrity of each physician serves as a limit to treatment demands. I maintain that none of these versions succeeds in overcoming the standard objection that futility determinations involve value judgments best left to the patients, their designated surrogates, or their families. Nor do resource considerations change this fact, since they should not influence the properly patient-centered judgment about futility. (shrink)

Marek Piechowiak's Plato's Conception of Justice and the Question of Human Dignity offers a comprehensive and groundbreaking reinterpretation of Plato's practical philosophy. The study directly challenges the widely accepted view—popularized by thinkers like Karl Popper—that Plato laid the theoretical foundations for totalitarian regimes. Instead, the author argues that Plato's works contain profound reflections on what is recognized today as inherent and universal human dignity. By approaching Plato from the perspective of modern legal orders, the book demonstrates that his thought provides (...) a foundation for the protection of human rights rather than authoritarian control. Dignity and Existential Perfection At the core of this re-evaluation is an analysis of the Demiurge's speech in the Timaeus. The author shows that Plato recognizes a special, existential perfection in certain beings, described as being "beautifully harmonised and in fine condition". This inner unity and harmony serve as the ontological basis for a being's dignity. Because of this inherent excellence, the Demiurge wills their continuing existence for their own sake, establishing a strict prohibition against treating such beings purely instrumentally. Consequently, the individual is viewed as an autotelic end (an end in itself). Reinterpreting the Republic The book extensively analyzes Plato's conception of justice, particularly within the Republic. It argues that the famous model of the hypothetical state, with its strict division of classes and occupations, is not a literal political project for an ideal society. Instead, it serves as a heuristic device—a "phantom" or eidolon of justice—designed to help readers investigate and understand the justice of the individual soul. When discrepancies arise between applying claims to the state versus the individual, Plato consistently prioritizes the individual. True justice is an internal unity and existential perfection of the human being, rather than a matter of performing a single external social function. Law, Autonomy, and Just Actions Furthermore, the study fundamentally reshapes our understanding of Plato's views on the relationship between the individual and the state. The author contends that the state and its laws possess only instrumental value; their primary aim is the goodness, happiness, and mutual friendship of the citizens. The book defends Plato against charges of paternalism by highlighting his recognition of individual autonomy. In Plato's framework, wisdom provides clear knowledge about what should be avoided, but it does not dictate a single path of action, thereby leaving significant room for individuals to freely shape their own lives. The book also explores the content of just actions and punitive justice. It argues that for Plato, just actions are those that benefit others and never cause harm, even to enemies. Punishment is conceptualized as a form of medicine intended to heal the soul of the wrongdoer, aiming at their personal moral improvement rather than serving the abstract interests of the state. Ultimately, this monograph systematically demonstrates that without accounting for Plato's reflections on dignity, his overarching theory of justice cannot be fully understood. (shrink)

Non-sustainable societies can therefore be explained descriptively, but can sustainability be justified as a normative goal? The factual influence of values on our behaviour is limited. But when we ask what is normatively right, talking about values is the crucial level. Sustainability, in the sense of intertemporally and globally tenable ways of life and production, is a normative requirement. In order to justify this ethically and legally, a new foundation of universal justice is necessary. Common ethical approaches, which are intended (...) to show the possibility of objective normative statements, prove to be not very convincing on closer inspection. The present theory of universal justice explores the limits of normative rationality and demonstrates that there is considerable scope for balancing without rendering normative questions purely subjective. Furthermore, the area of good living proves to be rationally intangible.The variant of universal justice developed here as the basis of ethics and law and thus also the concretisation of sustainability is a heterodox discourse ethics. It is designed as the basis of a revised ethical and right-interpretive conception of liberal democracy with human rights and separation of powers at the national, European and international level. In particular, the argument that there is no alternative and an elenctic argument justify (a) the possibility of reason in questions of about what is supposed to be and (b) human dignity, i.e. the respect for the autonomy of the individual, and impartiality as (the only) universal principles of justice that logically cannot be denied without self-contradiction. This proves right not only in discourse, but also in practice and also vis-à-vis merely hypothetical discourse partners, i.e. vis-à-vis all human beings. These principles provide the basis for a comprehensive universal right to liberty, which is not limited to certain areas of life, to a democracy with separation of powers, and to a duty to guarantee all this legally.This entire approach, centred around the liberal-democratic basic principles of reason, dignity, impartiality and freedom (and democracy with separation of powers), which in their (still unclear) connection appear for the first time with Kant, can be read as crucial modification of classical discourse ethics. In contrast, contextualistic, metaphysical and skeptic (including empiricist, e.g. utilitarian and cost-benefit-analytical) approaches which compete with a liberal-democratic universalism of discourse-ethical character prove to be unconvincing. This also applies to other versions of liberal-democratic theory such as those of Rawls or Sen. In order to determine concrete sustainability contents, an interpretation of the concept of sustainability itself or of topoi such as a legal “state objective for environmental protection” is not very promising, because it remains too vague. Rather, a new ethical and legal interpretation of human rights in the sense of overcoming a primarily economy-oriented understanding of freedom makes sense. This provides an ethically and legally stable basis for sustainability while at the same time overcoming the incompleteness of liberal-democratic philosophies. All statements on justice are statements on the social level. Ethical obligations of the individual that go beyond the obligation to bring about a just—including sustainable—social order are difficult to imagine inter alia due to a lack of concreteness under the auspices of sustainability problems as quantity problems. This is one of the reasons why human rights are always conveyed through public authority, even if their origin lies in the relationship between individuals.In general, human rights prove to be rights to freedom and to the elementary preconditions of freedom. A distinction of negative and positive freedom does not work. The ethical and legal interpretation that human rights only protect selected, supposedly particularly valuable freedom activities, is equally unconvincing. The humandignity principle (understood as the required respect for the autonomy of the individual, i.e. the principle of self-determination) and the impartiality principle understood as the required independence from specific perspectives) are not fundamental rights, nor are they intended to say anything at all about a concrete ethical or legal individual case. Rather, they are the basis for justifying and interpreting freedom and thus also for a sustainability-oriented reinterpretation of freedom, of the rules of balancing, and of democratic institutions. All this and more applies to liberal-democratic nation states, to the EU and also to international institutions and organisations—also based on a further developed figure of general principles of international law.Ethically and legally (also on a transnational level), as normative essence of sustainability, there is a right to the elementary preconditions of freedom. This means conditions such as life, health, subsistence level in the form of food, water, security, climate stability, elementary education, absence of war and civil war, etc. The protection of other freedom-promoting conditions, on the other hand, has no ethical or legal human-rights status, but nevertheless deserves recognition, albeit not the duty of the public authorities to act. This is where sustainability concerns are located if they are not elementary to freedom.—The possible alternative to the existing concept of freedom, which would be an ethics of capabilities or need, is rejected due to a number of logical and legal issues, problems of application, and illiberal tendencies.The freedom outlined in this way, including its elementary preconditions, deserves legal and ethical protection also intertemporally and globally, and thus leads to a human-rights-based theory of sustainability. In particular, arguments for this intertemporal and global extension can be formulated under aspects of potentiality and freedom protection where freedom is endangered. Counterarguments against an intertemporal-global protection of fundamental rights such as the future-individual paradox or the reference to unknown preferences of future generations are ultimately not convincing. The precautionary principle can be classified as a sub-aspect of human rights; it reflects their protection even in uncertain, long-term and multi-causal risk situations. Furthermore, freedom also contains protection by the state, not only defense against the state. These insights are not rendered irrelevant by certain widespread objections to such a multipolar understanding of freedom (e.g. in relation to democracy and the separation of powers). The classical distinctions of action and omission and also deontology versus consequentialism thus latently lose their object. Only in view of all of these steps it is possible to interpret human rights in a manner which includes the protection against climate change, dwindling resources, etc. and thus concrete normative sustainability criteria become conceivable.Environmental-ethical pathocentrism or eco-centrism can make no additional contribution to the normative theory of sustainability issues, since these approaches prove to be untenable at closer inspection. Nevertheless, environmental protection has a comprehensive ethical and legal justification. In general, freedom is limited only by freedom and the preconditions of freedom of other people, not by any form of common good or the like, which should rather be rejected as a concept. Questions of the good life elude regulation, which is why the ethical and legal justification of sustainability measures does not refer to the subsequent possibly greater happiness of those whose freedom is restricted. Discourses on frugality and nudging, for example, are often based on false assumptions in this respect. Main issues of the welfare state can be identified as sustainability phenomena, taking the threat of climate change into account, although the possibility of objectively answering distributional questions is often overestimated.Ethical and legal decisions can only be understood as a balancing situation (between various freedoms, elementary preconditions of freedom, further freedom promoting conditions and everything that can be derived from all of the above). Any sustainability decision is thus marked by normative and factual uncertainties (which is usually overlooked). Concrete problems such as “strong versus weak sustainability” or the relevance of a specific argument can only be meaningfully resolved within this theoretical framework.The ethical and legal theory of sustainability is also developed as a transformed theory of democracy and of balance of powers. The main victims of today’s unsustainability are not voters of today’s parliaments and governments, but future generations and people in other countries. Sustainability is thus in conflict with democracy, to which it—on the other hand—has an affinity because of the necessity of discourses and learning processes (which also rules out any kind of ecodictatorship).Institutional innovations compared to the existence of democracies based on separation of powers are only indicated to a limited extent in the context of sustainability. The most important point is to establish liberal-democratic institutions on an international level in addition to the national sphere. The right balancing rules, which are the very basis for normative sustainability statements, can be obtained through a legal and ethical balancing theory, which goes beyond traditional legal and ethical approaches and sociological risk theory. These balancing rules outline the scope normatively rational statements which are possible to make e.g. on sustainability and which are based on liberal-democratic principles. Rules of procedure and fact-finding rules can also be derived, as can a new human-rights understanding of the precautionary principle in law and ethics. There are also rules for taking new findings in valuations and facts into account. In the interplay of the powers (nationally and transnationally), the violation of balancing rules leads to an obligation to make a new decision in compliance with the previously violated rule—and thus ultimately to an obligation to (significantly) more sustainability. Violated rules in terms of sustainability concern e.g. the factual basis of climate policy to date and the polluter pays principle. The most important rule for the context of sustainability is the prohibition to ruin the basis of balancing as such by depriving its physical foundations. In spite of all remaining leeway, this already carries a human rights obligation similar to the extent of the 1.5-degree temperature limit in Article 2 para. 1 Paris Agreement. A partly similar statement can be made for other resource and sink challenges, but not for all of them. If using further balancing rules such as the polluter pays principle and economic capacity, it is also possible to give some indications as to how the efforts and costs of mitigation and adaptation should be distributed globally.All this is also meant as an alternative to the economic cost-benefit analysis, which ultimately represents an empiricist ethics in disguise. It is not only based on a (hidden) untenable normative basic theory and has unsolvable application problems. It also finds itself in insoluble conflicts with a liberal-democratic legal system that does not allocate rights according to solvency and does not primarily organise votes as plebiscitary snapshots. (shrink)

Modern free speech law in liberal democracies is oriented around some basic, categorical distinctions. This chapter examines four such categories: speech versus conduct (speech generally receives far greater protection than non-expressive conduct); public versus private actors (most legal systems place sharp limits on public regulation of free expression but generally protect private autonomy); political versus commercial (speech related to economic transactions is subject to greater regulation than political or cultural speech); and finally, public discourse (...) class='Hi'>versus domestic gossip (the former being universally considered more worthy of protection). Without these distinctions modern free speech law would be unworkable, because it would devolve into either radical libertarianism or tyranny. This chapter demonstrates that the evolution of the internet and social media into the primary platforms for commerce and expression has fundamentally destabilized each of these categories. This is because the very natures of a digital economy and a disaggregated social media undermine the distinction between the commercial and the political, as well as between the public and the private. I conclude by arguing that if workable new categories of speech are to be constructed, scholars and decision-makers must start with first principles establishing _why_ free speech remains of paramount importance today. (shrink)

Non-sustainable societies can therefore be explained descriptively, but can sustainability be justified as a normative goal? The factual influence of values on our behaviour is limited. But when we ask what is normatively right, talking about values is the crucial level. Sustainability, in the sense of intertemporally and globally tenable ways of life and production, is a normative requirement. In order to justify this ethically and legally, a new foundation of universal justice is necessary. Common ethical approaches, which are intended (...) to show the possibility of objective normative statements, prove to be not very convincing on closer inspection. The present theory of universal justice explores the limits of normative rationality and demonstrates that there is considerable scope for balancing without rendering normative questions purely subjective. Furthermore, the area of good living proves to be rationally intangible.The variant of universal justice developed here as the basis of ethics and law and thus also the concretisation of sustainability is a heterodox discourse ethics. It is designed as the basis of a revised ethical and right-interpretive conception of liberal democracy with human rights and separation of powers at the national, European and international level. In particular, the argument that there is no alternative and an elenctic argument justify (a) the possibility of reason in questions of about what is supposed to be and (b) human dignity, i.e. the respect for the autonomy of the individual, and impartiality as (the only) universal principles of justice that logically cannot be denied without self-contradiction. This proves right not only in discourse, but also in practice and also vis-à-vis merely hypothetical discourse partners, i.e. vis-à-vis all human beings. These principles provide the basis for a comprehensive universal right to liberty, which is not limited to certain areas of life, to a democracy with separation of powers, and to a duty to guarantee all this legally.This entire approach, centred around the liberal-democratic basic principles of reason, dignity, impartiality and freedom (and democracy with separation of powers), which in their (still unclear) connection appear for the first time with Kant, can be read as crucial modification of classical discourse ethics. In contrast, contextualistic, metaphysical and skeptic (including empiricist, e.g. utilitarian and cost-benefit-analytical) approaches which compete with a liberal-democratic universalism of discourse-ethical character prove to be unconvincing. This also applies to other versions of liberal-democratic theory such as those of Rawls or Sen. In order to determine concrete sustainability contents, an interpretation of the concept of sustainability itself or of topoi such as a legal “state objective for environmental protection” is not very promising, because it remains too vague. Rather, a new ethical and legal interpretation of human rights in the sense of overcoming a primarily economy-oriented understanding of freedom makes sense. This provides an ethically and legally stable basis for sustainability while at the same time overcoming the incompleteness of liberal-democratic philosophies. All statements on justice are statements on the social level. Ethical obligations of the individual that go beyond the obligation to bring about a just – including sustainable – social order are difficult to imagine inter alia due to a lack of concreteness under the auspices of sustainability problems as quantity problems. This is one of the reasons why human rights are always conveyed through public authority, even if their origin lies in the relationship between individuals.In general, human rights prove to be rights to freedom and to the elementary preconditions of freedom. A distinction of negative and positive freedom does not work. The ethical and legal interpretation that human rights only protect selected, supposedly particularly valuable freedom activities, is equally unconvincing. The humandignity principle (understood as the required respect for the autonomy of the individual, i.e. the principle of self-determination) and the impartiality principle understood as the required independence from specific perspectives) are not fundamental rights, nor are they intended to say anything at all about a concrete ethical or legal individual case. Rather, they are the basis for justifying and interpreting freedom and thus also for a sustainability-oriented reinterpretation of freedom, of the rules of balancing, and of democratic institutions. All this and more applies to liberal-democratic nation states, to the EU and also to international institutions and organisations – also based on a further developed figure of general principles of international law.Ethically and legally (also on a transnational level), as normative essence of sustainability, there is a right to the elementary preconditions of freedom. This means conditions such as life, health, subsistence level in the form of food, water, security, climate stability, elementary education, absence of war and civil war, etc. The protection of other freedom-promoting conditions, on the other hand, has no ethical or legal human-rights status, but nevertheless deserves recognition, albeit not the duty of the public authorities to act. This is where sustainability concerns are located if they are not elementary to freedom. – The possible alternative to the existing concept of freedom, which would be an ethics of capabilities or need, is rejected due to a number of logical and legal issues, problems of application, and illiberal tendencies.The freedom outlined in this way, including its elementary preconditions, deserves legal and ethical protection also intertemporally and globally, and thus leads to a human-rights-based theory of sustainability. In particular, arguments for this intertemporal and global extension can be formulated under aspects of potentiality and freedom protection where freedom is endangered. Counterarguments against an intertemporal-global protection of fundamental rights such as the future-individual paradox or the reference to unknown preferences of future generations are ultimately not convincing. The precautionary principle can be classified as a sub-aspect of human rights; it reflects their protection even in uncertain, long-term and multi-causal risk situations. Furthermore, freedom also contains protection by the state, not only defense against the state. These insights are not rendered irrelevant by certain widespread objections to such a multipolar understanding of freedom (e.g. in relation to democracy and the separation of powers). The classical distinctions of action and omission and also deontology versus consequentialism thus latently lose their object. Only in view of all of these steps it is possible to interpret human rights in a manner which includes the protection against climate change, dwindling resources, etc. and thus concrete normative sustainability criteria become conceivable.Environmental-ethical pathocentrism or eco-centrism can make no additional contribution to the normative theory of sustainability issues, since these approaches prove to be untenable at closer inspection. Nevertheless, environmental protection has a comprehensive ethical and legal justification. In general, freedom is limited only by freedom and the preconditions of freedom of other people, not by any form of common good or the like, which should rather be rejected as a concept. Questions of the good life elude regulation, which is why the ethical and legal justification of sustainability measures does not refer to the subsequent possibly greater happiness of those whose freedom is restricted. Discourses on frugality and nudging, for example, are often based on false assumptions in this respect. Main issues of the welfare state can be identified as sustainability phenomena, taking the threat of climate change into account, although the possibility of objectively answering distributional questions is often overestimated.Ethical and legal decisions can only be understood as a balancing situation (between various freedoms, elementary preconditions of freedom, further freedom promoting conditions and everything that can be derived from all of the above). Any sustainability decision is thus marked by normative and factual uncertainties (which is usually overlooked). Concrete problems such as “strong versus weak sustainability” or the relevance of a specific argument can only be meaningfully resolved within this theoretical framework.The ethical and legal theory of sustainability is also developed as a transformed theory of democracy and of balance of powers. The main victims of today’s unsustainability are not voters of today’s parliaments and governments, but future generations and people in other countries. Sustainability is thus in conflict with democracy, to which it – on the other hand – has an affinity because of the necessity of discourses and learning processes (which also rules out any kind of ecodictatorship).Institutional innovations compared to the existence of democracies based on separation of powers are only indicated to a limited extent in the context of sustainability. The most important point is to establish liberal-democratic institutions on an international level in addition to the national sphere. The right balancing rules, which are the very basis for normative sustainability statements, can be obtained through a legal and ethical balancing theory, which goes beyond traditional legal and ethical approaches and sociological risk theory. These balancing rules outline the scope normatively rational statements which are possible to make e.g. on sustainability and which are based on liberal-democratic principles. Rules of procedure and fact-finding rules can also be derived, as can a new human-rights understanding of the precautionary principle in law and ethics. There are also rules for taking new findings in valuations and facts into account. In the interplay of the powers (nationally and transnationally), the violation of balancing rules leads to an obligation to make a new decision in compliance with the previously violated rule – and thus ultimately to an obligation to (significantly) more sustainability. Violated rules in terms of sustainability concern e.g. the factual basis of climate policy to date and the polluter pays principle. The most important rule for the context of sustainability is the prohibition to ruin the basis of balancing as such by depriving its physical foundations. In spite of all remaining leeway, this already carries a human rights obligation similar to the extent of the temperature limit in Article 2 para. 1 PA. A partly similar statement can be made for other resource and sink challenges, but not for all of them. If using further balancing rules such as the polluter pays principle and economic capacity, it is also possible to give some indications as to how the efforts and costs of mitigation and adaptation should be distributed globally.All this is also meant as an alternative to the economic cost-benefit analysis, which ultimately represents an empiricist ethics in disguise. It is not only based on a (hidden) untenable normative basic theory and has unsolvable application problems. It also finds itself in insoluble conflicts with a liberal-democratic legal system that does not allocate rights according to solvency and does not primarily organise votes as plebiscitary snapshots. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:I Saw My ReflectionAdrienne Feller NovickI saw my reflection as I looked through the window of the isolation room. The image caused me to pause and look again. The reflection of sunlight had merged my image and the patient's together. For a moment, we seemed to be one person.She was pale with translucent skin, her bald head obscured under a colorful scarf. Her three children sat as still as (...) statues, staring at their mother wordlessly. Then, I realized her children appeared to be the same ages as my children. I felt a surge of emotions jumbled together, a mother should not die like this, leaving her young children motherless. She and I shared the exact same birthday; it could have been me in that hospital bed. However, I did not have a terminal diagnosis and my children were safe at home, complaining about doing homework. In the blink of an eye, without even recognizing what had just happened, I was face to face with my mortality.I tampered my emotions and held them back. I collected myself, and remembered the reason I was there. My professionalism took charge. I am a member of the Medical Ethics consultation service at a large healthcare system. A request was made to help with the ethical dilemma of a patient with a grave prognosis unwilling to discuss a hospice referral. The dilemma here represented two issues in conflict: patient autonomy and provider beneficence versus non-maleficence. Respect for autonomy allows each person the right to make informed decisions about their care that respect their values and personal beliefs. Provider beneficence is balanced by non-maleficence: beneficence is the expectation that physicians make treatment decisions in the best interest of the patient and non-maleficence guides physicians to minimize harm. This case called for analyzing the balance of autonomy with proportionality, weighing the risks versus the benefits of treatment decisions.I knocked on the door and they all turned and looked in my direction. The patient signaled me to enter. Although she was smiling, the sadness in the room was palpable. I introduced myself to the patient and her children and diplomatically explained the reason for my visit. I turned to the children and asked if there was anything I could get for them. I got three weak "no thanks." I asked the patient if I could stop by later. Then, I went to see my next patient. When I returned, I listened with rapt attention as she described the mosaic of her life story. When she finished, we sat together for a long time, neither of us speaking. Out of the blue, she told me she was not afraid of dying. She said she would welcome death to end her pain. She continued, explaining that her fear was that her children were not ready to accept her death. She was worried about how her death would hurt them, and all she wanted to do was to protect them. She reiterated her wish to be kept alive with all aggressive medical treatment possible. She communicated [End Page E6] that she understood and appreciated the severity of her condition. Her reason for continuing treatment was to give her children precious time. She said, "I would lie in front of a car to protect my children." As I was heading towards the door, her eyes welled up with tears. She thanked me for listening and for my kindness. We said our goodbyes. She remained full code and died four days later during cardiopulmonary resuscitation. I walked past her empty room later that day and kept walking.I was not prepared for how her death changed me. Throughout my career as a healthcare professional, I have primarily worked with patients at the end of their lives. I have seen many empty rooms following the death of a patient and helped countless people journey through their stages of grief towards acceptance. After I complete a consultation, I move on to the next patient. I do this every day. This time, something was different. After she died, I was not sleeping well, I had a hard time concentrating, I was not eating well, and I was... (shrink)

Background Person-centred care is based on ethical principles, and it is regarded as high-quality care. Care of older persons should embrace person-centredness. During the pandemic, older persons were highlighted as a vulnerable group at risk of developing serious illness and/or suffering death from COVID-19. Several pandemic-related measures were introduced in residential care facilities (RCFs) to reduce this risk, which influenced the possibilities to lead and provide a person-centred care. Aim This study’s aim was to explore ethical challenges in relation to (...) person-centredness during the COVID-19 pandemic, from the perspective of leaders in RCFs. Research design The study had a qualitative descriptive design. Participants and research context Semi-structured interviews were conducted with 26 leaders working in RCFs in Sweden. Data were analysed using conventional content analysis. Ethical considerations The study was approved by the Swedish Ethical Review Authority. The participants received oral and written information about the study and gave written consent. The study was conducted in accordance with the Declaration of Helsinki. Findings The overarching ethical challenge was Having to disregard the individual needs of the person in order to protect the group and society. This included (a) Protecting the group versus promoting the older person’s autonomy; (b) Being forced to lead care based on uncertainty instead of evidence; (c) Striving to provide dignified care but lacking opportunities; and (d) Going far beyond ordinary duty and endangering one’s own and the staff’s health. Discussion The ethical challenges meant being torn between the person’s individual needs and protecting the group and society, with clashing ethical principles as a consequence. Conclusions The leaders faced ethical situations resulting in undignified and compromised person-centred care, which has implications for stakeholders and management who need to address the work conditions in RCFs. (shrink)