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)

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)

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)

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)

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 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)

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)

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)

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)

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)

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...

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)

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)

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)

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)

This book examines the ethical issues in pediatric medical research. It argues that policies and practices on the participation of children must focus primarily on minimizing risks. It offers specific recommendations to revise Subpart D of the federal regulations to provide greater protection where necessary and remove obstacles that do not provide additional protection but interfere with access. The book is divided into four sections. Section 1 focuses on the issue of access versus protection in pediatric (...) research. Section 2 deals with challenges to regulations. Section 3 discusses the strengths and limits of current regulations, while different case studies are examined in Section 4. (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)

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)

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)

Since USA constitutional precedent established in 1976, adolescents have increasingly been afforded the right to access contraception without first obtaining parental consent or authorisation. There is general agreement this ethically permissible. However, long-acting reversible contraception methods have only recently been prescribed to the adolescent population. They are currently the most effective forms of contraception available and have high compliance and satisfaction rates. Yet unlike other contraceptives, LARCs are associated with special procedural risks because they must be inserted and removed by (...) trained healthcare providers. It is unclear whether the unique invasive nature of LARC changes the traditional ethical calculus of permitting adolescent decision-making in the realm of contraception. To answer this question, we review the risk–benefit profile of adolescent LARC use. Traditional justifications for permitting adolescent contraception decision-making authority are then considered in the context of LARCs. Finally, analogous reasoning is used to evaluate potential differences between permitting adolescents to consent for LARC procedures versus for emergency and pregnancy termination procedures. Ultimately, we argue that the invasive nature of LARCs does not override adolescents’ unique and compelling need for safe and effective forms of contraception. In fact, LARCs may oftentimes be in the best interest of adolescent patients who wish to prevent unintended pregnancy. We advocate for the specific enumeration of adolescents’ ability to consent to both LARC insertion and removal procedures within state policies. Given the provider-dependent nature of LARCs and the stigma regarding adolescent sexuality, special political and procedural safeguards to protect adolescent autonomy are warranted. (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)

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)

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)

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)

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 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)

In lieu of an abstract, here is a brief excerpt of the content:The Clinic as Testing Ground for Moral Theory: A European ViewHans-Martin Sass (bio)A Philosopher’s View of Theory in the Clinical SettingThe clinic is a testing ground for theories. I am not clinician; I am a philosopher who has been in the clinic only as a patient or as an ethicist who never has had the final word nor was ever intended to have the final word. I have learned (...) that in the clinical setting general norms and conceptualizations in the Kantian sense must be tailored to real-life situations. From the philosophical schools of analytical reasoning, I learned the skills needed to analyze words and meanings and to dissect problems and so-called “solutions.” But even more impressive are the methodological skills of differential diagnosis, looking at medical problems from different angles and using different methods and instruments. The detail- and patient-oriented work of the clinician provides an excellent model of methodological clarity and professional devotion for a philosopher who assists those working for the “good of the patient.” That model has led to the development of what I call a theory and methodology of differential ethics. [End Page 351]Differential ethics is normative ethics, as it does not give up norms in favor of situational utility. Differential ethics does not venture out empty-handed in order to explore and find principles pre-existing in a given situation; rather it brings basic values and principles along with it and tries to discover the shape they must take and the priority they must be given in the situation at hand. Differential ethics differentiates between general norms and mid-level principles, virtues, and visions that must be introduced and protected effectively and specifically according to different scenarios (Sass 1993). From this European point of view, I shall briefly explain my position and comment on (1) the controversy between principlism and virtue theory, (2) differentiating and balancing, and (3) the importance of trust, both as a principle and as a virtue in the clinical setting.Principlism Versus Virtue Theory: A Mistaken ControversyFrom a European perspective, I find that the debate between the schools of virtue-theory and principlism in the United States is a mistaken controversy. The real conflict between the schools of thought is not methodology, but content. Tom Beauchamp (1995) gives examples of how one language or method can be translated into the other, and Edmund Pellegrino and David Thomasma (1988, p. 206) have formulated a rule for the virtuous physician that, in the language of principlism, reads “respect for autonomy,” but in the language of virtue theory reads “To assist my patients to make choices that coincide with their own values or beliefs, without coercion, deception, or duplicity.”In different situations, however, some systems of reference are more authoritative and effective than others. Appealing to professional virtues would be the most efficacious way to address an audience coherent in attitudes and concerned about personal character. Reaffirmation of personal and professional obligations in secular fraternities or religious communities works best when it includes an appeal to virtues in the language of the humanist tradition, moral theology, or professional ethics.But there are other situations in which authoritative attitudes and expectations are absent and society in general is searching for common, often dormant, principles that will hold it together whatever specific disagreements arise. Such a situation was present in 1978 when the Belmont Report (National Commission 1978) presented principles—respect for autonomy, nonmaleficence, beneficence, justice—and not virtues to guide moral and political reflections on and reactions to the ethical, legal, and social implications of modern biomedicine in a multi-faceted and multi-cultural society.The formal difference between the systems of principlism, virtue theory, and value theory becomes even less important when clinical-ethical questionnaires are used to understand specific scenarios or cases and to assess different options for proceeding. Thus, my first thesis is: Case discussion, scenario assessment, [End Page 352] and open questionnaires, rather than definite guidelines, bridge the difference between virtue theory and principlism, since such processes can employ any one language or a combination of all three.Differentiating and BalancingMy second thesis is: Whatever system of reference is used... (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)

Human beings can be ethically frail under the pressure of situational forces, therefore the constraining force of the law is required. The ethics community need to have the confidence and courage to seek for the best ethical guidelines to become such constraining laws. However laws are themselves only ethical when they informed by a consensus that includes and represents the needs of the parties they are intended to protect, therefore the voice of the volunteer must be heard. Specific examples are (...) adduced to show how the current Clinical Trials Regulations are either insufficient in their scope, or not being fully met. To conclude eight suggestions are given as to how volunteers might be better protected. These include the establishment of an independent funded body to inform and support volunteers, a volunteers charter, greater consultation with volunteers, and a change in ethos involving a more egalitarian partnership between all those involved in the development of new medicines. (shrink)

This article critically evaluates the conception of conscience underlying the debate about the proper place and role of conscience in the clinical encounter. It suggests that recovering a conception of conscience rooted in the Catholic moral tradition could offer resources for moving the debate past an unproductive assertion of conflicting rights, namely, physicians’ rights to conscience versus patients’ rights to socially and legally sanctioned medical interventions. It proposes that conscience is a necessary component of the moral life in general (...) and a necessary resource for maintaining a coherent sense of moral agency. It demonstrates that an earlier and intellectually richer conception of conscience, in contrast with common contemporary formulations, makes the judgments of conscience accountable to reason, open to critique, and protected from becoming a bastion for bigotry, idiosyncrasy, and personal bias. (shrink)

The author considers the notion that the doctor is the sole arbiter of what happens to a defective neonate; how this is a logical confusion of scientific assessment with value judgment. The utilitarian concept found in a democracy is taken to be the superior source of ethics which ought to guide doctors. Finally, the logical conclusion is claimed to be that legislation alone will effectively enunciate society's standards.

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)

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)

A great part of human genetics research is carried out collecting data and building large databases of biological samples that are in a non-anonymous format. These constitute a valuable resource for future research. The construction of such databases and tissue banks facilitates important scientific progress. However, biobanks have been recognized as ethically problematic because they contain thousands of data that could expose individuals and populations to discrimination, stigmatization and psychological stress if misused. Informed consent is regarded as a cornerstone in (...) the protection of personal autonomy in research involving human subjects. Yet in recent years this fundamental concept has been overwhelmed by the genomic revolution. From a general overview of international literature, it seems evident that informed consent issues have come into sharp focus, in particular in relation to the twin issues of time extension (blanket versus specific/repeated consent) and personal extension (group consent). After an introduction on obtaining informed consent in the context of genetic research, this paper addresses the apparent lack of a single, universal model of obtaining informed consent among populations involved in genetic research and it argues for the need to develop an ethical framework tailored to the specific features of each project. In order to support this theory of contextualizing, the case of a private biotechnology company, SharDNA is presented. The present paper explores the management of its biobank, developed from a genetic research project carried out on isolated populations living on the Italian island of Sardinia. In particular, the paper highlights how the company is tackling the problem of informed consent and other ethical requirements for genetic research, such as the respect of individual privacy, the population approach and the existing Italian legal regulatory framework. (shrink)

In diesem Beitrag sollen Iris Marion Youngs gerechtigkeitstheoretische Überlegungen zu Unterdrückungsformen und Mechanismen ihrer Stabilisierung zur Analyse der Situation der Pflege in Deutschland und der politischen Diskurse darüber fruchtbar gemacht werden. Ausgehend von Youngs These, dass das bloße Postulat formal gleichberechtigter Teilhabe unterschiedlicher Gruppen an politischen Meinungsbildungs- und Entscheidungsprozessen nicht automatisch auch zu deren gleichberechtigter und wirksamer Interessensvertretung führt, werden resultierende gesellschaftliche Ungerechtigkeiten, von denen Pflegende und die Pflege betroffen sind, den „Fünf Formen der Unterdrückung“ ihrer gleichnamigen Theorie zugeordnet. Diese (...) Unterdrückungsformen werden erläutert und auf die aktuelle Situation der Pflege hin interpretiert. Im Fazit wird der Bezug zum Thema gerechter Partizipation und damit ihre Bedeutung für die aktuellen pflegepolitischen Diskurse in sozial- und gerechtigkeitstheoretischer Perspektive betont. Die Analysen Youngs können zum Verständnis politischer Prozesse und zu deren bewussten Mitgestaltung durch Pflegende beitragen. Konsequenzen ergeben sich insbesondere für die Pflegepädagogik, da auf dieser Basis ein kritisches pflegepolitisches und professionelles Selbstverständnis gefördert werden kann. (shrink)

Is it possible to reconcile a classical liberal approach to economics with a concern for the environment? The contributors to Economics and the Environment: A Reconciliation contend that it is. But they fail to distinguish properly between classical liberalism and a widespread orthodoxy in environmental policy communities in Europe and North America to the effect that economic instruments for environmental policy need more serious attention than they have hitherto received. Once this orthodoxy is distinguished from classical liberalism, the latter is (...) seen to be implausible. In particular, the classical liberal approach fails to deal with the practical and administrative problems involved in enforcing private property rights solutions to problems of environmental protection, wrongly generalizes from the failures of U.S. environmental policy to the failure of public regulation as such, and fails to take into account the claim that nature should be accorded intrinsic value. (shrink)