Applied Ethics

Informed consent documents are central to the informed consent process and are required for participation in clinical trials in the U.S. The primary purpose of the document is “to assist a prospect...

As biological organisms, we age and, eventually, die. However, age’s deteriorating effects may not be universal. Some theoretical entities, due to their synthetic composition, could exist independently from aging—artificial general intelligence (AGI). With adequate resource access, an AGI could theoretically be ageless and would be, in some sense, immortal. Yet, this need not be inevitable. Designers could imbue AGIs with artificial mortality via an internal shut-off point. The question, though, is, should they? Should researchers curtail an AGI’s potentially endless lifespan (...) by deliberately making it mortal? It is this question that this article explores. First, it considers what type of AGI is under discussion before outlining how such beings could be ageless. Then, after clarifying the type of immortality under discussion and arguing that imbuing an AGI with synthetic aging would be person-affecting, the article explores four core conundrums: (i) deliberately causing a morally significant being’s death; (ii) immortality’s associated harms; (iii) concerns about immortality’s unequal assignment; and (iv) the danger of immortal AGI overlords. The article concludes that while prudence requires we create an aging AGI, in the face of the material harm such an action would constitute, this is an insufficient reason to justify doing so. (shrink)

Background Professional values are important in promoting healthy work environments, patient satisfaction, and quality of care. Magnet® hospitals are recognized for excellence in nursing care and as such, understanding the relationship between nurses' values and Magnet status is essential as healthcare organizations seek to improve patient outcomes. Research question/aim/objectives The research question is: are there differences in individual values, professional values, and nursing care quality for nurses and nurse managers practicing in Magnet, Magnet journey, and non-Magnet direct patient care settings? (...) Research Design This descriptive cross-sectional study is guided and informed by the conceptual framework of the Professional Values Model including individual values, professional values, and nursing care quality. Participants and research context Convenience sampling of registered nurses and nurse managers, responsible for direct patient care, was utilized in a non-profit healthcare system in the Midwest region of the United States. Ethical Considerations Institutional review board approval was obtained. Participants were informed about the right to self-determine participation and assurance of anonymity. Findings 827 (n = 827) nurses and nurse managers responded to the survey. Significant differences were identified in individual values sub-scale: self-enhancement ( p = 0.38), professional values ( p = 0.037), practice environment: participation in hospital affairs ( p = 0.00), foundations for quality care ( p = 0.016), and resources adequacy ( p = 0.012) and in nurse sensitive HCAHPS questions: nurses explained things understandably ( p = 0.00), got help as soon as wanted ( p = 0.00), and treated with courtesy and respect ( p = 0.00). Discussion/Conclusions Findings indicate that fostering individual and professional values may impact nursing practice, regardless of Magnet designation. Promoting professional values may contribute to improved work environments, enhancing patient satisfaction. Study results offer valuable insights for organizations striving to enhance nursing values, impacting quality of care provided to patients. MeSH Terms Cross-Sectional Studies, Respect, Ethics Committees, Patient Satisfaction, Nurse Administrators, and Personal Satisfaction. (shrink)

Aims This study aimed to explore the relationship among moral distress, psychological capital, and burnout in registered nurses. Ethical consideration The study was approved by the Ethics Committee of the School of Nursing, Hangzhou Normal University (Approval no. 2022001). Methods A cross-sectional descriptive survey was conducted with a convenience sample of 397 nurses from three Grade-A tertiary hospitals in Zhejiang Province, China. Participants completed demographic information, the Nurses’ Moral Distress Scale, the Nurses’ Psychological Capital Scale, and the Maslach Burnout Inventory (...) Scale. The data were analyzed using Pearson’s correlation analysis, structural equation modeling, and hierarchical multiple regression analysis. Results The study found that moral distress and burnout are positively correlated, while psychological capital is negatively correlated with both moral distress and burnout. The path analysis in structural equation modeling revealed that moral distress has a significant direct effect on psychological capital, while psychological capital has a significant direct effect on burnout. In addition, moral distress also had a significant indirect effect on burnout through psychological capital. Moreover, both the direct effect of moral distress on burnout and the total effect of moral distress on burnout were significant. Conclusion The findings suggest that psychological capital plays an important role in the relationship between moral distress and burnout. Promoting psychological capital among nurses may be a promising strategy for preventing moral distress and burnout in the workplace. (shrink)

In the wake of the Dobbs decision withdrawing federal constitutional protection for reproductive rights, the United States is in the throes of federalist conflicts. Some states are enacting draconian prohibitions of abortion or gender-affirming care, whereas other states are attempting to shield providers and their patients seeking care. This article explores standard arguments supporting federalism, including that it allows for cultural differences to remain along with a structure that provides for the advantages of common security and commerce, that it provides (...) a laboratory for confined experiments, that it is government closer to the people and thus more informed about local needs and preferences, and that it creates layers of government that can constrain one another and thus doubly protect rights. We contend that these arguments do not justify significant differences among states with respect to the recognition of important aspects of well-being; significant injustices among subnational units cannot be justified by federalism. However, as nonideal theorists, we also observe that federalism presents the possibility of some states protecting rights that others do not. Assuming that movement among subnational units is protected, those who are fortunate enough to be able to travel will be able to access rights they cannot access at home. Nonetheless, movement may not be readily available to minors, people without documentation, people with disabilities, people who lack economic resources, or people who have responsibilities that preclude travel. Only rights protection at the federal level will suffice in such cases. (shrink)

Among the most harrowing visuals of Britain’s ongoing ‘cost of living crisis’ are the security tags that began to appear on cheese, butter, chicken, sweets and infant formula milk in 2022. A week’s worth of formula milk—the sole or main food of the vast majority of infants for the first 6 months of life—now costs between £9.39 and £15.95.1 Low-income households are entitled to a ‘Healthy Start’ welfare payment, intended to avert malnutrition among the poorest children, but the weekly allowance (...) is just £8.50.2 There are reports of parents watering down formula, skipping or limiting feeds and initiating early weaning, all of which jeopardise the health of infants, with potentially lifelong consequences.3 No determinant of health is more critical than food. A 2019 study found that diet is the most significant risk factor for non-communicable disease, and that one in five deaths globally could be prevented by improving nutrition.4 Globally, 1 in 10 people cannot meet their daily energy needs,1 and the proportion of undernourished people is rising.5 In more than 50 countries, most of them in Africa, over a quarter of children are stunted or wasted due to undernourishment, with long-term effects on their cognitive and physical development. These are not problems of absolute scarcity; enough food is produced globally to feed ten billion people.6 In the UK, there is, at any given moment, sufficient food on supermarket shelves to meet the calorie and nutrient needs of the population. Yet the equivalent of nearly 200 million meals a year are discarded,7 while almost a quarter …. (shrink)

In our ‘The Professional Virtue of Civility and the Responsibilities of Medical Educators and Academic Leaders’,1 we provided an historically based conceptual account of the professional virtue of civility and the role of leaders of academic health centres in creating and sustaining an organisational culture of professionalism that promotes civility among healthcare professionals and between medical educators and learners. We emphasised that any adequate understanding of the virtues, including professional virtues, has cognitive, affective, behavioural and social components. Some of the (...) commentators expand on these components in important ways. Xuhao et al emphasises the importance of role models, especially in the hierarchical context of medical education.2 The hierarchy of faculty in the senior position and junior doctors and other learners below them has characterised medical education for centuries. Xuhao et al rightly call for academic leaders to shape this hierarchy in a morally responsible way, by becoming ‘exemplary role models’.2 Berry, a clinician manager, in critiquing our account, calls for an increased appreciation for the psychological and environmental factors that might explain why uncivil behaviour occurs.3 …. (shrink)

Brain age prediction is a relatively new tool in neuro-medicine and the neurosciences. In research and clinical practice, it finds multiple use as a marker for biological age, for general health status of the brain and as an indicator for several brain-based disorders. Its utility in all these tasks depends on detecting outliers and thus failing to correctly predict chronological age. The indicative value of brain age prediction is generated by the gap between a brain’s chronological age and the predicted (...) age, the brain age gap (BAG). This article shows how the clinical and research use of brain age prediction tacitly pathologizes the states that it is sensitive to. It will be argued that the tacit character of this transformation conceals the need for its explicit justification. (shrink)

The Nuffield Council on Bioethics (NCOB) is delighted to pick up the mantel of the Ethics briefings. For readers less familiar with the NCOB’s work, we are a leading independent policy and research centre, and the foremost bioethics body in the UK. We identify, analyse and advise on ethical issues in biomedicine and health so that decisions in these areas benefit people and society.1 Established in 1991, the NCOB has tackled a wide range of bioethics and medical ethics issues over (...) its thirty-two years, including issues relating to the beginning and end of life, health and society, data and technology, and research ethics. Early reports in the 1990s included, for example, ‘Genetics screening: the ethical issues’ and ‘Animal-to-human transplants: the ethics of Xenotransplantation’. More recent projects include setting out an ethical framework in the report ‘The future of ageing: ethical considerations for research and innovation’2 and a current joint project with the Ada Lovelace Institute3 considering the potential ethical implications of the convergence of AI and genomics technologies.4 In recent years, NCOB has increasingly focused on horizon scanning. What current and future national and international developments are likely to raise ethical issues in the short, medium and long-term? Insights for 2023 will soon be available at www.nuffieldbioethics.org/what-we-do/horizon-scanning, with new developments likely to be included alongside ongoing areas of medical and scientific research that we are tracking progress in, for example, in vitro derived gametes, surrogacy, biosafety and novel neurotechnologies. Disagreements between parents and healthcare teams about …. (shrink)

There is a need for all industries, including healthcare, to reduce their greenhouse gas emissions. In anaesthetic practice, this not only requires a reduction in resource use and waste, but also a shift away from inhaled anaesthetic gases and towards alternatives with a lower carbon footprint. As inhalational anaesthesia produces greenhouse gas emissions at the point of use, achieving sustainable anaesthetic practice involves individual practitioner behaviour change. However, changing the practice of healthcare professionals raises potential ethical issues. The purpose of (...) this paper is twofold. First, we discuss what moral duties anaesthetic practitioners have when it comes to practices that impact the environment. We argue that behaviour change among practitioners to align with certain moral responsibilities must be supplemented with an account of institutional duties to support this. In other words, we argue that institutions and those in power have second-order responsibilities to ensure that practitioners can fulfil their first-order responsibilities to practice more sustainably. The second goal of the paper is to consider not just the nature of second-order responsibilities but the content. We assess four different ways that second-order responsibilities might be fulfilled within healthcare systems: removing certain anaesthetic agents, seeking consensus, education and methods from behavioural economics. We argue that, while each of these are a necessary part of the picture, some interventions like nudges have considerable advantages. (shrink)

Background The COVID-19 pandemic has placed an unprecedented burden on nurses who have been at the forefront of patient care. The continuous exposure to suffering, death, and overwhelming demands has the potential to lead to compassion fatigue, a state of emotional, physical, and cognitive exhaustion. Research aim The study aimed to explore and understand the phenomenon of compassion fatigue in nurses as the effect of the COVID-19 pandemic. Research design A constructivist grounded theory design was used. Participants and research context (...) The research data were collected from 20 nurses who had been employed in pandemic clinics in Turkey for a minimum of 6 months. Data were collected using a two-step approach: purposeful sample selection followed by theoretical sample selection. Individual interviews were conducted via an online platform with participants who consented to participate in the study from January 16th to April 28th, 2022. The collected data underwent initial, focused, and theoretical coding for analysis. The research findings were reported following the Consolidated Criteria for Reporting Qualitative Research guidelines. Ethical considerations Ethical approval for the study was received from Non-Interventional Clinical Research Ethics Committee. The study was conducted following the Declaration of Helsinki. Findings The study identified a core category, namely the desire to provide the best care, which was accompanied by five main categories: causes, symptoms, consequences, coping methods, and the benefits of coping methods. Conclusion During the pandemic process, nurses have experienced compassion fatigue due to various factors and have seen its symptoms. Nurses have developed various coping mechanisms individually. However, they have not indicated any institutional-level support. It has become necessary to plan nurse-centered comprehensive interventions that will reduce compassion fatigue. (shrink)

In late 2021, tennis star Chris Evert learned new genetic information about her sister, who died from ovarian cancer in January 2020. As Evert has explained in posts published by ESPN, her sister had a variant in the BRCA1 gene that was reclassified—upgraded—from a variant of uncertain significance (VUS) to pathogenic. Hearing about the variant’s reclassification likely saved Evert’s life. After getting genetic testing that showed she also carried the variant, Evert underwent prophylactic surgery. Clinical testing associated with the procedure (...) revealed she already had stage 1c ovarian cancer. The Wall Street Journal reported on a different variant reclassification story in 2019. Seven female relatives had prophylactic surgeries after cascade genetic testing indicated they each carried the same pathogenic variant in BRCA2. However, there was significant distress and confusion when one of the women received notice that the variant had been downgraded from pathogenic to a VUS. As these cases illustrate, reclassification of the clinical significance of genetic variants—which ranges from pathogenic, likely pathogenic, uncertain, likely benign and benign—can have profound impacts on individuals and families. Although genetic testing often provides valuable information, many identified variants are of uncertain significance, even in genes associated with disease. Many of these VUS will be reclassified as genomic data …. (shrink)

In‐vitro fertilization clinics across the world currently use the body mass index (BMI) to assess risk for and determine access to in‐vitro fertilization (IVF); however, clinics vary widely in both setting specific BMI limits for access to IVF and articulating the reasons for their policies. Given that scholars have begun to question the usefulness of BMI for individual health risk assessment, it is striking that ethicists have not yet systematically evaluated the reasons given for using BMI in assessing individuals' risk (...) in IVF treatments. In this paper, I provide the first systematic analysis of the chief arguments currently offered by IVF programs for using BMI as a criterion for risk assessment. Specifically, I articulate empirical concerns about the success of IVF in high‐BMI patients, practical concerns about the ability of high‐BMI patients to safely undergo procedures associated with IVF, and ethical concerns about the risk‐to‐reward ratio for high‐BMI patients and their potential children. I advance a series of objections to those arguments, using empirical data regarding IVF procedures and analogies with other high‐risk conditions including systemic lupus erythematosus, and science regarding the diagnosis of BMI‐correlated comorbidities such as high blood pressure or diabetes to argue that BMI alone is not a reasonable criterion for risk assessment in IVF; moreover, the usage of BMI may involve unacceptable violations of the bioethical principles of justice and respect for autonomy. Instead, I hold that IVF programs should rely on more precise laboratory and clinical measurements to evaluate risk in IVF. (shrink)

Hendricks set out to construct an antiabortion version of Jeff McMahan’s Embryo Rescue case in which you have two choices—(1) save a woman from an unwilling pregnancy or (2) save a fetus from being killed. In his Pregnancy Rescue case, he contends we ought to choose (2), which he thinks shows abortion is immoral. However, I argue the Pregnancy Rescue case is a false dilemma because you can save both. I propose an alternative, more elegant dilemma, the Ectogenesis Rescue case (...) with the same choices (1) and (2). Hendricks also believes his case can serve as an antiabortion version of Thomson’s Violinist case, showing that abortion is immoral even if a fetus is not a person. However, while Thomson’s Violinist substitutes the fetus with a person, Hendricks fails to substitute the fetus with something that is not a person. I propose an alternative, the Snakebite Rescue case, which does this. (shrink)

The Danish healthcare system must meet the need for easy and equal access to healthcare for every citizen. However, investigations have shown unfair prioritization of cancer patients and unfair prioritization of resources for expensive medicines over care. What is needed are principles for proper prioritization. This article investigates whether American ethicists Tom Beauchamp and James Childress’s principle of justice may be helpful as a conceptual framework for reflections on prioritization of expensive biological therapies in the Danish healthcare system. We present (...) an empirical study exploring the principles for prioritizing new expensive biological therapies. This study includes qualitative interviews with key Danish stakeholders experienced in antibody therapy and prioritizing resources for expensive medicines. Beauchamp and Childress’s model only covers government-funded primary and acute healthcare. Based on the interviews, this study indicates that to be helpful in a Danish context this model should include equal access for citizens to government-funded primary and acute healthcare, costly medicine, and other scarce treatments. We conclude that slightly modified, Beauchamp and Childress’s principle of justice might be useful as a conceptual framework for reflections on the prioritization of expensive biological therapies in the Danish healthcare system. (shrink)

While Gabriel Watts and Ainsley Newson argue that diagnostic laboratories do not have a general duty to routinely reinterpret genomic variant classifications, they do formulate several restricted duties to actively reinterpret specific types of classifications.1 They place these duties with laboratories, acknowledging that they are setting aside any responsibilities that might arise for clinicians. Here, we will discuss the implications of this obligation for clinicians and the moral tension it may confront them with. We focus in particular on the consequences (...) of the proposed moral obligation to actively reinterpret variant classifications that carry a higher risk of being false positives. Such reclassification is likely to result in ‘downgrades’: previously pathogenic variants (pathogenic/likely pathogenic, P/LP) reclassified to benign (likely benign/benign, LB/B) or uncertain variants (variant of uncertain significance, VUS). Any laboratory policy to actively reinterpret (specific sets of) classifications will confront the clinician with the question whether the person tested should be recontacted on a reinterpretation of previously reported results. As others have pointed out, recontacting in general comes with challenges, since patients may not want to be recontacted or have forgotten about their genetic test.2 3 Recontacting in case of a downgrade, however, is particularly impactful. Previous studies on the psychosocial impact of reclassification on patients …. (shrink)

Background Forward-looking, democratically oriented governance is needed to ensure that human genome editing serves rather than undercuts public values. Scientific, policy, and ethics communities have recognized this necessity but have demonstrated limited understanding of how to fulfill it. The field of bioethics has long attempted to grapple with the unintended consequences of emerging technologies, but too often such foresight has lacked adequate scientific grounding, overemphasized regulation to the exclusion of examining underlying values, and failed to adequately engage the public. Methods (...) This research investigates the application of scenario planning, a tool developed in the high-stakes, uncertainty-ridden world of corporate strategy, for the equally high-stakes and uncertain world of the governance of emerging technologies. The scenario planning methodology is non-predictive, looking instead at a spread of plausible futures which diverge in their implications for different communities’ needs, cares, and desires. Results In this article we share how the scenario development process can further understandings of the complex and dynamic systems which generate and shape new biomedical technologies and provide opportunities to re-examine and re-think questions of governance, ethics and values. We detail the results of a year-long scenario planning study that engaged experts from the biological sciences, bioethics, social sciences, law, policy, private industry, and civic organizations to articulate alternative futures of human genome editing. Conclusions Through sharing and critiquing our methodological approach and results of this study, we advance understandings of anticipatory methods deployed in bioethics, demonstrating how this approach provides unique insights and helps to derive better research questions and policy strategies. (shrink)

Addiction is a common condition affecting millions of people worldwide of which only a small proportion receives treatment. The development and use of healthcare services is influenced by how addiction is understood (e.g., a condition to treat, a shameful condition to stigmatize), notably with respect to how volition is impacted (e.g., addiction as a choice or a disease beyond one’s control). Through semi-structured qualitative interviews, we explore the implicit views and understandings of addiction and volition across three stakeholder groups: people (...) with lived experience of addiction, clinicians with experience treating addiction, and members of the public without lived experience of addiction. We notably examine whether three paradigms, i.e., three philosophical sets of understandings about the nature of reality and knowledge (realism, relativism, pragmatism) reflect how stakeholders envision addiction and volition in the context of addiction. The use of these paradigms allows for the characterization of different stances on addiction and volition and an assessment of the coherence of beliefs about these matters. Our findings demonstrate that few participants relied on a single epistemic paradigm when describing their views. Furthermore, there were notable differences in understandings of volition between the clinician group, who were more oriented toward pragmatism, and people with lived experience of addiction, who were less oriented toward realism. Despite its limitations, our study suggests that a greater appreciation for the complexity of views held by different stakeholders about addiction and volition could help critically assess the search for coherence expressed in academic and policy debates. (shrink)

Background Standard interpretations of the ethical principle of respect for persons have not incorporated the views and values of patients, especially patients from groups underrepresented in research. This limits the ability of research ethics scholarship, guidance, and oversight to support inclusive, patient-centered research. This study aimed to identify the practical approaches that patients in community-based settings value most for conveying respect in genomics research. Methods We conducted a 3-round, web-based survey using the modified Delphi technique to identify areas of agreement (...) among English-speaking patients at primary care clinics in Washington State and Idaho who had a personal or family history of cancer. In Round 1, respondents rated the importance of 17 items, identified in prior qualitative work, for feeling respected. In Round 2, respondents re-rated each item after reviewing overall group ratings. In Round 3, respondents ranked a subset of the 8 most highly rated items. We calculated each item’s mean and median rankings in Round 3 to identify which approaches were most important for feeling respected in research. Results Forty-one patients consented to the survey, 21 (51%) completed Round 1, and 18 (86% of Round 1) completed each of Rounds 2 and 3. Two sets of rankings were excluded from analysis as speed of response suggested they had not completed the Round 3 ranking task. Respondents prioritized provision of study information to support decision-making (mean ranking 2.6 out of 8; median ranking 1.5) and interactions with research staff characterized by kindness, patience, and a lack of judgment (mean ranking 2.8; median ranking 2) as the most important approaches for conveying respect. Conclusions Informed consent and interpersonal interactions are key ways that research participants experience respect. These can be supported by other approaches to respecting participants, especially when consent and/or direct interactions are infeasible. Future work should continue to engage with patients in community-based settings to identify best practices for research without consent and examine unique perspectives across clinical and demographic groups in different types of research. (shrink)

Background In June 2016, Canada legalized medical assistance in dying (MAiD). From the outset, some healthcare institutions (including faith-based and non-faith-based hospitals, hospices, and residential aged care facilities) have refused to allow aspects of MAiD onsite, resulting in patient transfers for MAiD assessments and provision. There have been media reports highlighting the negative consequences of these “institutional objections”, however, very little research has examined their nature and impact. Methods This study reports on findings from 48 semi-structured qualitative interviews conducted with (...) MAiD assessors and providers, MAiD team members (working to coordinate care and lead MAiD programs in institutions and health authorities), and family caregivers on their experiences with institutional objection. Participants were recruited from the Canadian provinces of British Columbia, Ontario, and Nova Scotia. Data were analyzed using inductive thematic analysis. Results Themes identified were: (1) basis for institutional objection (with objections commonly rooted in religious values and a particular philosophy of palliative care); (2) scope of objection (demonstrating a wide range of practices objected to); (3) lack of transparency regarding institutional position; (4) impacts on patients; (5) impacts on health practitioners; and (6) catalysts for change. Participants reported that many institutions’ objections had softened over time, lessening barriers to MAiD access and adverse impacts on patients and health practitioners. Participants attributed this positive change to a range of catalysts including advocacy by health practitioners and family members, policymaking by local health authorities, education, and relationship building. Nevertheless, some institutions, particularly faith-based ones, retained strong objections to MAiD, resulting in forced transfers and negative emotional and psychological impacts on patients, family members, and health practitioners. Conclusions This paper adds to the limited evidence base about the impacts of institutional objection and can inform practical and regulatory solutions in Canada and abroad. Reform is needed to minimize the negative impacts on patients, their caregivers, and health practitioners involved in MAiD practice. (shrink)

Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual’s genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant’s genetic results, since prevailing US practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics – in which genetic information, privacy, and autonomy are considered to be familial – (...) endorsed in UK genomic medicine and by participants in a multi-method study of US research participants presented here. The dilemma reflects a conflict between US legal and ethical frameworks that privilege “the individual” and exclude “the family” versus actual human genetics that are simultaneously individual and familial. Can human genetics succeed in challenging bioethics’ hegemonic individualism to recognize and place the family at the center of the room where bioethics happens? (shrink)

In any proposal for specicide, as represented by mosquito eradication, one must acknowledge that this involves a complex set of moral trade-offs. Taking it as given that the health burden of vector-borne diseases has to be reduced drastically, this chapter lays out the landscape of normative arguments that can be brought in the mosquito’s defence. These, in turn, should be involved in deliberations about whether such large-scale eradication practices can be morally justified. In favour of mosquito protection, several (but not (...) exhaustive) kinds of arguments are presented based on individual mosquito’s moral standing, the value of each species, concerns about hubris and risks, and questions about preferable alternatives. At the same time, this chapter also inquires whether the conflict between humans and mosquitos can be framed as a matter of self-defence—attributing to humans a right to defend themselves. A morally important distinction here is that the mosquito is merely instrumentalized by the disease that it carries which is the real motive of self-defence, showing that mosquitos are innocent in several senses of the term. Taking all these different moral considerations seriously leaves us with an awareness that the eradication of these species cannot be treated lightly. (shrink)

End-of-life decision making frequently involves a complex balancing of clinical, cultural, social, ethical, religious and economic considerations. Achieving a happy balance of these sometimes-competing interests, however, can be particularly fraught in a family-centric society like Singapore where the family unit often retains significant involvement in care determinations necessitating careful consideration of the family’s position during the decision-making process. While various decision-making tools such as relational autonomy, best interests principle and welfare-based models have been proposed to help navigate such difficult decision-making (...) processes, their application in practical terms, however, is dubious at best. This case report is presented to highlight these issues and explore the utility of these frameworks within the Singapore end-of-life care context when the interests of the family may be dissonant from those of the patient. (shrink)

Ethics in managing climate change most often involves two issues that are tightly connected. The first involves considerations about the just distribution of entitlements and burdens, and the second concerns the fair differentiation of responsibilities. The chapter explains the most important ethical implications of international climate politics and shows why justice plays a key role in all areas of climate policy. Furthermore, it introduces the main domains of climate justice: historical, global, and intergenerational justice. Depending on the policy area at (...) issue, different combinations of principles of climate justice seem most appropriate. The chapter concludes by showing that the differentiation of responsibilities depends not only on which principles of justice are employed but also on the particular climate policy area and level that are at issue. (shrink)

The article analyzes the experience of climate anxiety. The investigation is phenomenological in the sense that I will attempt to show that contemporary climate anxiety has a distinctive structure and philosophical meaning, which make it different from both psychological anxiety and existential anxiety, as commonly understood. I will also draw out the consequences of my phenomenological analysis for climate politics. My contention is that forms of prefigurative climate politics can respond to the profound disorientation and apathy regarding our future and (...) help us face down the hyperbolic nihilism shadowing us. (shrink)

In this article, I present a philosophical account of medical treatment. In support of this account, I offer a suggestive account of medical conditions. The account of medical treatment uses three desiderata to demarcate treatment from non-treatment. Namely, a treatment should: (1) be describable by features that enable it to be standardized and characterized as a discrete intervention, (2) target a specific medical condition, and (3) have the possibility of being effective. The account of medical conditions underlies the second desideratum (...) and attempts to tie medical conditions closely to biological dysfunction, while also including some conditions for which biological dysfunction is absent or its presence uncertain. I offer a simple typology of treatments and show how the accounts are relevant to treatment effectiveness, disease, placebos, contested treatments, and treatment standardization. (shrink)

Artificial intelligence is currently changing many areas of society. Especially in health, where critical decisions are made, questions of control must be renegotiated: who is in control when an automated system makes clinically relevant decisions? Increasingly, the concept of meaningful human control (MHC) is being invoked for this purpose. However, it is unclear exactly how this concept is to be understood in health. Through a systematic review, we present the current state of the concept of MHC in health. The results (...) show that there is not yet a robust MHC concept for health. We propose a broader understanding of MHC along three strands of action: enabling, exercising and evaluating control. Taking into account these strands of action and the established rules and processes in the different health sectors, the MHC concept needs to be further developed to avoid falling into two gaps, which we have described as theoretical and labelling gaps. (shrink)

The COVID-19 pandemic has necessitated rapid research to aid in the understanding of the disease and the development of novel therapeutics. One option is to conduct controlled human infection trials (CHITs). In this article I examine the history of deliberate human infection and CHITs and their utilization prior to the COVID-19 pandemic, key ethical considerations of CHITs in the COVID-19 setting, an analysis of the World Health Organization’s (WHO) Key criteria for the ethical acceptability of COVID-19 human challenge studies, and (...) a review of the two COVID-19 CHITs that have already commenced, their compliance with the WHO criteria and other ethical considerations. (shrink)

How should we make sense of praise and blame and other such reactions towards collective agents like governments, universities, or corporations? Collective agents can be appropriate targets for our moral feelings and judgements because they can maintain and express moral positions of their own. Moral agency requires being capable of recognising moral considerations and reasons. It also necessitates the ability to react reflexively to moral matters, i.e. to take into account new moral concerns when they arise. While members of a (...) collective agent are capable of this, the collective frames the thinking of the individual moral agents within it and affects their options in myriad ways. The moral positions thus formed and expressed belong to the collective. Crucially, unlike marginal moral agents, collective agents as moral actors can be held fully responsible for their acts and omissions. (shrink)

In 2016, summarily outlawing all chemical inputs, the Indian state of Sikkim transitioned to completely organic agriculture. Despite “organic discontents” of farmers and citizens about autocratic implementation, lowered yields, and unsatisfactory prices, “Sikkim Organic” enjoys global accolades and local compliance. The paradox of alternative agriculture in the Global South is that it is often promoted by the same state-science-capital hegemonic formation that pushed the conventional paradigm. How has the Sikkimese state negotiated this paradox and continued to claim success, when other (...) radical state-led organic transformations have failed? Recent scholarship advocates for contextual definitions of organic success, beyond the parameters of yield and profit. They examine the socio-political concerns of farmers, middlemen and consumers that shape their engagement with the phenomenon. This lens is seldom applied to the state. Drawing on ethnographic conversations with farmers, local consumers, state officials and discourse analysis of governmental literature and speeches, this article analyzes the Sikkimese state’s efforts at consolidating its hegemony as a process of political brand-building. Highlighting the cultural aspects of policy implementation, it analyzes the affective resonances about traditional agrarian practices and about the morality of organic markets that the state discursively creates to support its organic regime. This extends the critique of the state beyond the focus on governmentality and neoliberalization through state-led certification/standardization. The article neither absolves the state of its failures nor dismisses the potential of progressive organic policies. It shows the significance of contextual cultural-political framings in determining outcomes of large-scale experiments towards sustainable agrarian futures. (shrink)

There is lively debate on the question if states have legitimate authority to enforce the exclusion of (would-be) immigrants. Against common belief, I argue that even non- cosmopolitan liberals have strong reason to be sceptical of much contemporary border authority. To do so, I first establish that for liberals, broadly defined, a state can only hold legitimate authority over persons whose moral equality it is not engaged in undermining. I then reconstruct empirical cases from the sphere of international relations in (...) which what I call ‘colonial norms’ continue to play significant structuring roles. I argue that it is sometimes only by unveiling these colonial norms and the roles they play that we can understand how some states today culpably contribute to undermining the moral equality of persons over whom they will come to claim immigration-related authority. I thus contend that paying attention to colonial norms distinctly enables us to reveal a set of instances in which all liberals should agree that states forfeit legitimate authority over would-be immigrants. (shrink)

Predictive medicine presents opportunities to consider later life under conditions of illness, such as dementia. This paper examines how family caregivers (N = 27) assess the opportunity of prediction and early diagnosis of dementia for oneself based on their particular experience. Furthermore, it compares their attitudes with laypersons’ attitudes (N = 43) towards genetic testing of APOE. By this, we elaborate how much personal experience impacts anticipation and affects, but also moral attitudes towards predictive medicine. Differences in our settings do (...) not allow for direct comparison, so our analysis focuses on multiple similarities in the assessments of predictive (non-genetic vs. genetic) testing. Groups’ reasoning showed also differences influenced mainly by personal experience. Family caregivers addressed more responsibility towards family and had more hopes into medical treatments. To cope with the disease, they expressed expectations to start with medicine and care decisions as early as possible. Laypersons, however, stressed self-determination more and expressed worries about the influence of the pharmaceutical industry by referring to unnecessary medication and, implicitly, the medicalization of aging. (shrink)

23andMe not only sells genetic testing but also uses customer data in its R&D activities and commercial partnerships. This raises questions about transparency and informed consent. Based on a online survey conducted in 2017–18, we examine attitudes of 368 customers of 23andMe toward the company's use of their data. Our findings point at divides in the context of customers' awareness of the two-sided business model of DTC genetics and their attitudes toward consent. While most of our respondents (68%) were aware (...) that 23andMe could store their data and use it for certain purposes without their consent, over 40% were not aware that using and sharing customer data was part of the business model. Views were also divided regarding what type of consent was most appropriate. We explore the implications of these divides for participatory research and for the importance of transparency and trust in commercially-driven scientific knowledge production. (shrink)

To explore the clinical uptake of pharmacogenetic/pharmacogenomic toxicity testing to reduce adverse drug reaction incidences, this paper analyzes data collected through semi-structured face-to-face interviews with clinicians and/or clinician-scientists, primarily in the context of cancer treatment in multi-ethnic California (US), Vancouver (Canada) and Singapore. Recurrent themes in the data include the following: first, the scientific evidence for drug-gene interactions is perceived to be generally weak. Second, the primacy of medical treatment’s efficacy over toxicity is the predominant frame through which clinicians consider (...) testing. Third, physicians tailor their decisions according to each patient’s tolerance levels for toxicity. Fourth, racially and ethnically based toxicity risk estimates are a factor shaping the clinical uptake of genetic tests, but they are controversial. These factors contribute to the low clinical uptake of toxicity testing for predictive purposes. We argue that the decision-makers’ framing and perception are additional features to be considered in Hedgecoe’s (2008) “clinical usefulness” framework. (shrink)

Direct-to-consumer (DTC) genetic tests (GT) enable consumers to access a wide range of GT, without involving a healthcare professional, promoting an increasing disassociation of genetics from the clinical context. This study explores, through semi-structured interviews, the experiences and attitudes of European clinical geneticists towards DTCGT. Our results indicate that the participants have limited experience of consultations with patients regarding such tests. The majority of participants stated that consumers purchased tests out of curiosity and sought a general interpretation of test results (...) by a healthcare professional. Most respondents were skeptical of the quality of tests, especially regarding their clinical utility. The participants supported the importance of medical supervision and genetic counseling in this context. Finally, most respondents considered it their duty to accept consultations concerning DTCGT results. However, due to concerns over limited time and potential downstream costs, some participants supported that a prioritization system based on guidelines would be necessary. (shrink)

In Nietzsche and Friendship, Willow Verkerk provides a new and provocative account of Nietzsche's philosophy which identifies him as an agonistic thinker concerned with the topics of love and friendship. She argues that Nietzsche's challenges to the received principles of friendship from Aristotle to Kant offer resources for reinvigorating our thinking about friendship today. Through an examination of his free spirit texts, Human, All Too Human, Daybreak and The Gay Science together with Thus Spoke Zarathustra and Beyond Good and Evil, (...) Verkerk unlocks key aspects of Nietzsche's thinking on friendship, love, 'woman', the self, self-overcoming, virtue, and character. She questions Nietzsche's misogyny, but also considers the emancipatory potential of his writing by brining him into dialogue with postmodern, feminist, and transgender thinkers. This book revives interest in the ethical, therapeutic, and political dimensions of Nietzsche's philosophy. -/- . (shrink)

Direct-to-consumer genetic testing products and their participatory social media outlets provide users with new ways to understand ancestral identity, build community around shared results, and conceptualize the role of genetic determinism in their lives. In this article, I explore of role of user-generated information constructed with results from direct-to-consumer genetic scanning services such as 23andme, GEDMatch, AncestryDNA, MyHeritage. In particular, this paper considers how social capital is accumulated and disseminated utilizing these participatory tools in the communication practices of users. Through (...) the sharing of genealogical knowledge, historical expertise, communication technology skills, access to genealogical services, selective behaviors such as cooperation, trust building, and a reliable presence on these social networking sites are examined. Thus this article aims to examine consumer contact practices and information sharing of social capital in the form of familial origin narratives, genetic ancestry estimations, and how this communication shapes user interpretation of genetic results. (shrink)

Many “rising powers” such as India, China, Argentina, Singapore, and Brazil are investing in stem cell technology, joining the traditional leaders in the field, such as the UK, Germany, USA, and Japan. Malaysia is also entering this sector because of the potential medical and economic benefits that the use of stem cell technologies could provide. Like other countries, Malaysia faces the challenge of how to encourage scientific progress and innovation in an ethical manner while at the same time ensuring a (...) safe and accessible market for regenerative therapies. This paper reports on the research findings of semi-structured interviews with local stakeholders to investigate how they perceived and evaluated the current regulatory framework for human stem cell research in Malaysia, and what might be at stake if the state continues with its current regulatory approach. (shrink)

This article analyses shifts in metaphors in direct-to-consumer genetic testing, analyzing the websites and select media coverage of the nutrigenetic testing company Sciona (2000–2009) and the personal genome service 23andMe (2006–). Sciona represented genes and communication through the classical metaphor of information; genes coded for disease, and this information was transmitted from the expert company to the consumers. 23andMe represented genes and communication through a new metaphor of big data; genes were digital data or a resource that was browsed, correlated (...) with other data, uploaded and retrieved across lay customers, websites and companies. In terms of understanding health 23andMe tests and research still cast genes as coding for disease to be mitigated by lifestyle change and targeted drugs. However, rendering genes digital data or resources changed their social and economic meaning; genes could be circulated, shared and traded, which legitimized 23andMe’s business model of consumer genetics and private biobanking. (shrink)

Contracts are ubiquitous online. Clickwrap and browsewrap agreements are to be encountered on almost every website a person engages with when accessing services online. Through these documents, people enter into binding contractual relationships, often without reading and sometimes without noticing these documents, when they engage with a wide variety of services online. This article discusses the use of contracts by the direct-to-consumer genetic testing (DTCGT) industry, as the dominant means of industry self-regulation. To date limited attention has been paid to (...) these contracts. This article reviews the contracts of 71 companies that provide a variety of tests for health purposes. It considers these contracts from a consumer protection standpoint and identifies a number of problematic terms that may be challengeable under the UK’s consumer legislation and concludes by discussing the recent work potential for the UK’s Competition & Markets Authority to establish and enforce clear standards for DTCGT contracts. (shrink)

Background Healthcare professionals, especially professional nurses, experience various types of moral suffering due to inevitable ethical conflicts. Moral resilience is recently proposed as a resource to address moral suffering. However, there is no tool to measure moral resilience in Chinese professional nurses. Aim This study aimed to translate the Rushton Moral Resilience Scale (RMRS) into Chinese and evaluate the psychometric properties of the Chinese version of RMRS (Chi-RMRS). Research design A methodological and descriptive research design. Participants and research context A (...) convenience sample of 411 Chinese professional nurses was recruited through an online survey platform between February and March 2023. Ethical considerations This study was approved by the Research Ethics Committees of the University and hospitals involved. Results The RMRS was translated and culturally adapted into a Chinese version. Neither floor nor ceiling effects were observed. The scale-level content validity index (CVI) was 0.922 with the item-level CVIs ranging from 0.833 to 1.000. The explanatory factor analysis (EFA) generated a three-factor structure for the Chi-RMRS, and the confirmatory factor analysis (CFA) demonstrated the three-factor structure with factor loadings for each item ranging from 0.42 to 0.80. The scale-level Cronbach’s α coefficient was 0.811 with each dimension ranging from 0.717 to 0.821, and composite reliability (CR) coefficient for the overall scale was 0.920, with each dimension varying from 0.739 to 0.824. The standard error of measurement (SEM) and smallest detectable change (SDC) were 3.522 and 9.763, respectively. Discussion The Chi-RMRS is able to measure moral resilience of Chinese professional nurses, and has good validity and reliability. It can be used in research and practice to determine the level of moral resilience, thus helping nursing managers to monitor the status of Chinese professional nurses, then develop interventions to maintain the well-being of professional nurses and to ensure quality of care. (shrink)

Philosophers struggle to explain why human beings with deep cognitive impairments have a higher moral status than certain non-human animals. Modal personism promises to solve this problem. It claims that humans who lack the capacities of “personhood” and the potential to develop them nonetheless could have been persons. I argue that modal personism has poor prospects because it's hard to see how we could offer a plausible account of modal personhood. I search for an adequate understanding of modal personhood by (...) considering existing accounts and sketching new ones. But each account fails, either because it objectionably excludes some deeply cognitively impaired humans from the class of modal persons or because it makes modal personhood doubtfully relevant to moral status. And the modal personist cannot solve this problem by appealing to the misfortune suffered by modal persons. (shrink)