ABSTRACT The 1987 Amendment to the Infertility (Medical Procedures) Act (Vic) allows the creation of embryos specifically for research purposes, as long as the proposed experiment takes place within 24 hours. The purpose of this paper is to determine whether there is aany significant ethical difference between creating embryos specifically for research and using those that are surplus from the new reproductive technologies. The relevant arguments in this debate can be grouped under three heads: those focussing on the embryo; those (...) focussing on the possible consequences of these practices and those focussing on the women who donate the eggs. (shrink)

ABSTRACT This essay is an attempt to examine the idea that a professional code of practice can entail ethical conduct. It is focused around two differing perspectives on ethics. It will be argued that the professions have, perhaps too hastily, adopted one theory without considering the merits, or the objections offered by the alternative account. This alternative, a ‘cognitivist’ theory, is sketched, and the possible advantages of such an approach are discussed. Such a perspective means adopting a radically different approach (...) to the nature of ethics and what it is to be a moral agent, and could have interesting consequences for professional practice. Even if a cognitivist account is ultimately unconvincing, it does provide a number of worrying arguments for those professionals who believe that ethical conduct is generated by following a code of practice, and these arguments need to be addressed. (shrink)

Attempts to solve the Trolley Problem by means of a single principle have proved unpersuasive. Nor can the intuition about Transplant be adequately grounded in the hypothetical dissent of rational contractors. It is explained by the initial liability principle, that loss should lie where it falls unless there is sufficient reason to shift it. If we did not think we should accept misfortune in such cases and thought that minimising loss of life was sufficient reason to shift the loss we (...) should not be according others the minimum respect and treatment we feel is their due. The intuition about Trolley is explained by the affinity of that case to the pure case where the choice is between saving many and saving fewer, where minimising misfortune is the only credible option. But these considerations are not yet enough to accommodate the cases that lie between the extremes of Trolley and Transplant. We can handle the intermediate cases by attempting to assimilate them to one or other paradigm and to one another with a sensitivity to morally relevant and irrelevant differences that seeks initially to be faithful to the values reflected by our moral intuitions. Those intuitive judgements are unlikely to survive such an examination wholly unmodified. (shrink)

Environmental health remains a niche topic in bioethics, despite being a prominent social determinant of health. In this paper we argue that if bioethicists are to take the project of health justice as a serious one, then we have to address environmental injustices and the threats they pose to our bioethics principles, health equity, and clinical care. To do this, we lay out three arguments supporting prioritizing environmental health in bioethics based on bioethics principles including a commitment to vulnerable populations (...) and justice. We also highlight and advocate for environmental law efforts that align with these priorities, focusing specifically on the need for a right to a healthy environment. Our intention is to draw attention to the legal and ethical concepts that underlie the importance of a healthy environment, and urge bioethicists to prioritize both legal and ethical advocacy against environmental injustices in their practice. (shrink)

Ethical, Legal and Social Aspects (ELSA) originated in the 4thEuropean Research Framework Programme (1994) andresponsible research and innovation (RRI) from the EC researchagenda in 2010. ELSA has received renewed attention inEuropean funding schemes and research. This raises the questionof how these two approaches to social responsibility relate toone another and if there is the possibility to align. There is aneed to evaluate the relationship/overlap between ELSA and RRIbecause there is a possibility that new ELSA research will reinventthe wheel if it (...) does not engage with the body of literaturealready present in RRI research. This provides unneeded extrabureaucracy, reformulations of research agendas, extrainvestment, and an overabundance of frameworks to implement,and ELSA research does not take advantage of the body ofresearch developed in RRI. This paper evaluates how ELSA andRRI diverge, are complementary, and can be aligned. (shrink)

Throughout the COVID-19 pandemic, shortages of scarce healthcare resources consistently presented significant moral and practical challenges. While the importance of vaccines as a key pharmaceutical intervention to stem pandemic scarcity was widely publicized, a sizable proportion of the population chose not to vaccinate. In response, some have defended the use of vaccination status as a criterion for the allocation of scarce medical resources. In this paper, we critically interpret this burgeoning literature, and describe a framework for thinking about vaccine-sensitive resource (...) allocation using the values of responsibility, reciprocity, and justice. Although our aim here is not to defend a single view of vaccine-sensitive resource allocation, we believe that attending critically with the diversity of arguments in favor (and against) vaccine-sensitivity reveals a number of questions that a vaccine-sensitive approach to allocation should answer in future pandemics. (shrink)

Due to advancements in technology such as data science and artificial intelligence, healthcare research has gained momentum and is generating new findings and predictions on abnormalities leading to the diagnosis of diseases or disorders in human beings. On one hand, the extensive application of data science to healthcare research is progressing faster, while on the other hand, the ethical concerns and adjoining risks and legal hurdles those data scientists may face in the future slow down the progression of healthcare research. (...) Simply put, the application of data science to ethically guided healthcare research appears to be a dream come true. Hence, in this paper, we discuss the current practices, challenges, and limitations of the data collection process during medical image analysis (MIA) conducted as part of healthcare research and propose an ethical data collection framework to guide data scientists to address the possible ethical concerns before commencing data analytics over a medical dataset. (shrink)

Individuals with chronic spinal cord injury (CSCI) require complex and lengthy health services based on ethical philosophy. The virtue character that is most relevant to the egalitarian concept is fairness. The aim of the study is whether the character of fairness becomes the character of a doctor serving individuals with CSCI. It is a mixed method cross-sectional explanatory study, with questionnaires sent to doctors and individuals with CSCI, interviews with doctors, and healthcare system field observation. Sixty-two doctors and 33 patients (...) with CSCI participated in the study. The virtues most frequently chosen by doctors were love, gratitude, spirituality, zest, fairness, and kindness. The CSCI patients’ views regarding doctors’ characters were a postponement of personal interest, compassion, and loyalty to trust. All interviewed doctors indicated that they supported more than five of the 24 virtues. Doctors serve with ethical principles of virtue, even though the rewards received are inadequate. In fact, the use of health services by CSCI is still limited. Virtue ethics, especially the character of fairness, is necessary as a base of positive relationships between doctors and patients, to achieve equality of benefits for CSCI patients. Data obtained that the doctors’ character of fairness is still not the main choice. (shrink)

This paper presents the foundation upon which the contemporary knowledge of body integrity dysphoria (BID) is built. According to the World Health Organisation’s International Classification of Diseases, 11th edition (ICD-11), the main feature of BID is an intense and persistent desire to become physically disabled in a significant way. Three putative aetiologies that are considered to explain the insurgence of the condition are discussed: neurological, psychological and postmodern theories. The concept of bodily representation within the medical context is highlighted, with (...) the concept of dysphoria, which was brought to the fore with the introduction of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5), and the ICD-11. Contemporary issues of “justice” are addressed to identify ethically relevant distinctions between BID and sex reassignment surgery. It is argued that there is no ethically relevant difference between the BID actor’s desire for invasive surgical intervention and the wish of gender dysphoric individuals to undergo sex reassignment surgery procedures. Some BID actors self-mutilate, and this presents medical professionals with difficult choices regarding whether or not to intervene in order to satisfy the BID patient’s desire. Both abstention and intervention may lead to severe ethical complications for doctors and patients despite the positive outcomes in terms of quality of life for BID individuals who manage to undergo such procedures. (shrink)

This paper seeks to investigate and assess a particular form of relationship between the State and its citizens in the context of the COVID-19 pandemic, namely that of obedience to the law and its related right of protest through civil disobedience. We do so by conducting an analysis and normative evaluation of two cases of disobedience to the law: (1) healthcare professionals refusing to attend work as a protest against unsafe working conditions, and (2) citizens who use public demonstration and (...) deliberately ignore measures of social distancing as a way of protesting against lockdown. While different in many aspects, both are substantially similar with respect to one element: their respective protesters both rely on unlawful actions in order to bring change to a policy they consider unjust. We question the extent to which healthcare professionals may participate in civil disobedience with respect to the duty of care intrinsic to the medical profession, and the extent to which opponents of lockdown and confinement measures may reasonably engage in protests without endangering the lives and basic rights of non-dissenting citizens. Drawing on a contractualist normative framework, our analysis leads us to conclude that while both cases qualify as civil disobedience in the descriptive sense, only the case of healthcare professionals qualifies as morally justified civil disobedience. (shrink)

La comunicación de la verdad ética pasa históricamente por modelos, pero sus propuestas se discuten cuando no favorecen la belleza ética en la persona.El estudio refleja un análisis a modelos éticos en la cultura, para proponer la importancia de enfocar la educación ética valorando los paradigmas de una ética integradora y practica en un currículo global.Se infiere por el relativismo, una dialéctica que permanece sobre las certezas éticas; sobre lo justo, lo bueno, lo verdadero; sobre lo legal y lo ético; (...) para continuar divulgándose un discurso ético no de tipo vinculante, sin despertar pasión por la verdad. (shrink)

This paper aims to clarify the nature of understanding in medicine. The first part describes in more detail what it means to understand something and links a type of understanding (i.e., objectual understanding) to explanations. The second part proceeds to investigate what objectual understanding of a disease (i.e., biomedical understanding) requires by considering the case of scurvy from the history of medicine. The main hypothesis is that grasping a mechanistic explanation of a condition is necessary for a biomedical understanding of (...) that condition. The third part of the paper argues that biomedical understanding is necessary, but not sufficient for understanding in a clinical context (i.e., clinical understanding). The hypothesis is that clinical understanding combines biomedical understanding of a _disease_ or pathological condition with understanding _illness,_ which involves some degree of personal understanding of the patient. It is argued that, in many cases, clinical understanding necessitates adopting a particular second-personal stance and using cognitive resources _in addition_ to those involved in biomedical understanding. (shrink)

This paper presents an ethical framework designed to support the development of critical data literacy for research methods courses and data training programmes in higher education. The framework we present draws upon our reviews of literature, course syllabi and existing frameworks on data ethics. For this research we reviewed 250 research methods syllabi from across the disciplines, as well as 80 syllabi from data science programmes to understand how or if data ethics was taught. We also reviewed 12 data ethics (...) frameworks drawn from different sectors. Finally, we reviewed an extensive and diverse body of literature about data practices, research ethics, data ethics and critical data literacy, in order to develop a transversal model that can be adopted across higher education. To promote and support ethical approaches to the collection and use of data, ethics training must go beyond securing informed consent to enable a critical understanding of the techno-centric environment and the intersecting hierarchies of power embedded in technology and data. By fostering ethics as a method, educators can enable research that protects vulnerable groups and empower communities. (shrink)

Many popular artificial intelligence (AI) ethics frameworks center the principle of autonomy as necessary in order to mitigate the harms that might result from the use of AI within society. These harms often disproportionately affect the most marginalized within society. In this paper, we argue that the principle of autonomy, as currently formalized in AI ethics, is itself flawed, as it expresses only a mainstream mainly liberal notion of autonomy as rational self-determination, derived from Western traditional philosophy. In particular, we (...) claim that the adherence to such principle, as currently formalized, does not only fail to address many ways in which people’s autonomy can be violated, but also to grasp a broader range of AI-empowered harms profoundly tied to the legacy of colonization, and which particularly affect the already marginalized and most vulnerable on a global scale. To counter such a phenomenon, we advocate for the need of a relational turn in AI ethics, starting from a relational rethinking of the AI ethics principle of autonomy that we propose by drawing on theories on relational autonomy developed both in moral philosophy and Ubuntu ethics. (shrink)

Meeting appropriate ethical standards for research involving human participants, mean ensuring confidentiality. It is assumed that the research participant will accept the safeguarding protocols necessary to ensure confidentiality. This assumption however oversimplifies the variation of motivations that goes into participants’ decisions to participate in research. Drawing on reflections from my fieldwork experience in Ghana, I answer the questions: Why do research participants reject confidentiality? What ethical position can one take when the researcher and the researched have conflicting perspectives about confidentiality? (...) I contend that participants with personal stake refuse confidentiality when they want to be acknowledged for their data. Rejecting confidentiality is however, embedded in the individual perspective, cultural, and political context of the study area. The ethical concerns of such refusal can be ameliorated if confidentiality is nuanced to include six categorically distinct but mutually non-exclusive stages: research-planning, ongoing-information, writing-up, reality-after-research, differential-disseminations, and no-confidentiality-clause. The paper further argues that whilst maintaining institutional allegiance in this matter is crucial, employing confidentiality should lie at the intersection of participants’ motivation for taking part in the research, the socio-cultural-specific-context of the study location and the nature of the topic being explored. (shrink)

This article focuses on justified responses to “immoral” behavior and crimes committed by patients undergoing neuromodulation therapies. Such patients could be held morally responsible in the basic desert sense—the one that serves as a justification of severe practices such as backward‐looking moral outrage, condemnation, and legal punishment—as long as they possess certain compatibilist capabilities that have traditionally served as the quintessence of free will, that is, reasons‐responsiveness; attributability; answerability; the abilities to act in accordance with moral reasons, second‐order volitions, or (...) Deep Self. Recently leading compatibilist neuroethicists added the condition of not feeling alienated from desires motivating a person's action. This article argues against such attempts to determine conditions under which patients undergoing neuromodulation should be subject to negative reactive attitudes and legal punishment. Compatibilism should not be used to justify basic desert moral responsibility and legal punishment. Instead, a new way of thinking about the function of moral responsibility attribution is proposed for patients with neuromodulation. Their compatibilist capabilities should serve as important indicators for determining appropriate, forward‐looking courses of action, such as quarantining and restorative treatment, to ensure the public safety and well‐being of the patients. (shrink)

Since 2005, Malaysia has established several biobanks to keep in line with the advancement of biomedical research and development of biobanks in other countries such as the UK and the USA. Despite the establishment of several biobanks in Malaysia, little is known about the informed consent approach in biobanking research and its ethical challenges. This study aims to identify the approach in obtaining informed consent in the Malaysian biobanking for research and explore its ethical challenges. Using non-probability purposive sampling, an (...) in-depth interview with the key informants was conducted in Klang Valley. Based on the interviews, broad consent is the main approach used in obtaining informed consent in biobanking for research in Malaysia and five major ethical challenges were identified. These challenges include the informants’ opinion on the current informed consent approach, understanding participants’ rights, the role of the research ethics committee, biobanking governance in Malaysia, and informants’ knowledge and awareness. In summary, there is a lack of understanding among those involved in biobanking on the ethical, legal, and social aspects of biobanking for research in Malaysia. (shrink)

Although medical confidentiality is widely recognized as an essential principle in the therapeutic relationship, its systematic and coherent practice has been an ethically challenging duty upon healthcare providers due to various concerns of clinical, moral, religious, social, ethical and legal natures. Medical confidentiality can be breached to protect the patient and/or others if maintaining confidentiality causes serious harm. Healthcare professionals may encounter complicated situations whereby the divulgence of a patient’s confidential information may pose a threat to one party whereas the (...) concealment of such information may cause harm to another. After deliberating on the Islamic concept of harm (ḍarar), this paper focuses on the dual duty and conflicts of interests faced by healthcare professionals in the practice of medical confidentiality. Referring to serious infectious diseases with a special mention of AIDS, this study also provides discourse on how healthcare professionals deal with difficult scenarios of conflicts of interests and ethical dilemmas. (shrink)

Disclosure in clinical practice is aimed at promoting patient autonomy, usually culminating in patient choice (e.g., to consent to an operation or not, or between different medications). In medical ethics, there is an implicit background assumption that knowing more about (X) automatically translates to greater, or more genuine, autonomy with respect to one's choices involving (X). I challenge this assumption by arguing that in rare cases, withholding information can promote a patient's autonomy (understood as the capacity for rational choice in (...) alignment with one's values and goals). (shrink)

As Medicine shifts from a paternalistic practice to a patient-centered approach, the concept of medical informed consent (IC) has evolved to safeguard patient autonomy. However, its current implementation still presents many challenges in clinical practice. We assessed the knowledge and attitudes of the general Lebanese population regarding the IC process as well as their sociodemographic and medical correlates. An anonymous online survey was distributed to the Lebanese population using social media channels. A sample of 500 adults with an average age (...) of 36.2 ± 13.5 years, including 319 females and 181 males, was recruited. Most of the respondents had a university degree (85.8%), reported previous hospital admissions (75.9%) and had signed an IC for surgical procedures (40.7%). Few participants were knowledgeable about IC Lebanese law. Variability in knowledge level was significantly related to gender and a previous hospitalization history. Positive attitudes toward patient autonomy (53.1%) and shared decision-making (57.5%) correlated with older age, female gender, graduate education, and a previous history of signing an IC document. Males were more likely to believe that IC has positive effects on health than females. This is the first study that provides novel findings regarding Lebanese peoples’ awareness of the ethico-legal components of medical IC. (shrink)

Out of a concern for keeping suicidal patients alive, some psychotherapists may use hard persuasion or coercion to keep them in treatment. However, more recent evidence-supported interventions have made respect for patient autonomy a cornerstone, showing that the effective interventions that promote the wellbeing of suicidal patients also prioritize respect for patient autonomy. This article details how psychotherapists can incorporate respect for patient autonomy in the effective treatment of suicidal patients by listening to them, explaining treatments to them, involving them (...) in decisions, and inviting evaluations from them on the process and progress of their treatment. It also describes how processes that respect patient autonomy can supplement interventions that directly address some of the drivers of suicide. (shrink)

This excellent article (Nelson et al. 2023) clarifies the difficulties of incorporating diverse voices and those who speak of their own experience, into bioethics, a field that aspires to be object...

Darwin claimed that human and animal minds differ in degree but not in kind, and that ethical principles such as the Golden Rule are just an extension of thinking found in animals. Both claims are false. The best way to distinguish differences in degree from differences in kind is by identifying mechanisms that have emergent properties. Recursive thinking is an emergent capability found in humans but not in other animals. The Golden Rule and some other ethical principles such as Kant’s (...) categorical imperative require recursion, so they constitute ethical thinking that is restricted to humans. Changes in kind have tipping points resulting from mechanisms with emergent properties. (shrink)

AbstractThe Belmont Report continues to be held in high regard, and most bioethical analyses conducted in recent years have presumed that it affects United States federal regulations. However, the assessments of the report’s creators are sharply divided. Understanding the historic reputation of this monumental report is thus crucial. We first recount the historical context surrounding the creation of this report. Subsequently, we review the process involved in developing ethical guidelines and describe the report’s features. Additionally, we analyze the effect of (...) unfolding events on the subsequent creation of federal regulations, especially on gene therapy clinical trials. Moreover, throughout this paper we evaluate the ethical principles outlined in this report and describe how they overlap with the issue of protecting socially vulnerable groups. Based on the analysis, we conclude that the features of the Belmont Report cannot be considered as having affected the basic sections of the federal regulations for ethical reviews that were made uniform in 1981. Nevertheless, regarding the regulations on gene therapy clinical trials—which were at first expected to be applicable to research involving children—in addition to implementing policies regarding the public review of protocols that passed ethical review, this report’s principles are clearly reflected in the key notes that should have been referred to when the report was created. (shrink)

A large part of the explainable AI literature focuses on what explanations are in general, what algorithmic explainability is more specifically, and how to code these principles of explainability into AI systems. Much less attention has been devoted to the question of why algorithmic decisions and systems should be explainable and whether there ought to be a right to explanation and why. We therefore explore the normative landscape of the need for AI to be explainable and individuals having a right (...) to such explanation. This exploration is particularly relevant to the medical domain where the (im)possibility of explainable AI is high on both the research and practitioners’ agenda. The dominant intuition overall is that explainability has and should play a key role in the health context. Notwithstanding the strong normative intuition for having a right to explanation, intuitions can be wrong. So, we need more than an appeal to intuitions when it comes to explaining the normative significance of having a right to explanation when being subject to AI-based decision-making. The aim of the paper is therefore to provide an account of what might underlie the normative intuition. We defend the ‘symmetry thesis’ according to which there is no special normative reason to have a right to explanation when ‘machines’ in the broad sense, make decisions, recommend treatment, discover tumors, and so on. Instead, we argue that we have a right to explanation in cases that involve automated processing that significantly affect our core deliberative agency and which we do not understand, because we have a general moral right to explanation when choices are made which significantly affect us but which we do not understand. (shrink)

Pickering, Newton-Howes, and Young argue that a person should be considered incapable of making a specific decision if that decision is judged by onlookers to be seriously harmful to the dec...

The principle of clinical equipoise has been variously characterized by ethicists and clinicians as fundamentally flawed, a myth, and even a moral balm. Yet, the principle continues to be treated as the de facto gold standard for conducting randomized control trials in an ethical manner. Why do we hold on to clinical equipoise, despite its shortcomings being widely known and well-advertised? This paper reviews the most important arguments criticizing clinical equipoise as well as what the most prominent proposed alternatives are. (...) In the process, it evaluates the justification for continuing to use clinical equipoise as the gold standard for randomized control trials. (shrink)

Background:The concept of patient advocacy is still poorly understood and not clearly conceptualized. Therefore, there is a gap between the ideal of patient advocacy and the reality of practice. In order to increase nursing actions as a patient advocate, a comprehensive and clear definition of this concept is necessary.Research objective:This study aimed to offer a comprehensive and clear definition of patient advocacy.Research design:A total of 46 articles and 2 books published between 1850 and 2016 and related to the concept of (...) patient advocacy were selected from six databases and considered for concept analysis based on Rodgers’ evolutionary approach.Ethical considerations:This study was approved by the Research Ethics Committee of Tarbiat Modares University.Findings:The attributes of patient advocacy are safeguarding (track medical errors, and protecting patients from incompetency or misconduct of co-workers and other members of healthcare team), apprising (providing information about the patient’s diagnosis, treatment, and prognosis, suggesting alternatives of healthcare, and providing information about discharge program), valuing (maintaining self-control, enabling patients to make decisions freely, maintaining individualization and humanity, maintaining patient privacy, and acting in the patients’ values, culture, beliefs, and preferences), mediating (liaison between patients, families, and healthcare professionals, being patients’ voice, and communicate patient preferences and cultural values to members of the healthcare team), and championing social justice in the provision of healthcare (confronting inappropriate policies or rules in the healthcare system, identifying and correcting inequalities in delivery of health services, and facilitating access to community health services and health resources).Discussion and conclusion:The analysis of this concept can help to develop educational or managerial theories, design instruments for evaluating the performance of nurses in patient advocacy, develop strategies for enhancing patient advocacy, and improve the safety and quality of nursing care in the community and healthcare system. (shrink)

Billions of animals live and die under deplorable conditions in factory farms. Despite significant efforts to reduce human consumption of animal products and to encourage more humane farming practices, the number of factory-farmed animals is nevertheless on an upward trajectory. In this paper, we suggest that the high levels of suffering combined with short life-expectancies make the situation of many factory-farmed animals relevantly similar to that of palliative patients. Building on this, we discuss the radical option of seeking to reduce (...) the suffering of factory-farmed animals through the use of drugs that alleviate pain and distress, administered under a regimen where experiential wellbeing is prioritized over the aim of avoiding drug-dependence. (shrink)

Due to a history of coerced sterilization, a federal Medicaid sterilization policy mandates that a specific consent form be signed by a patient at least thirty days prior to when the patient undergoes sterilization. However, in contemporary obstetrical practice, the Medicaid sterilization policy serves as a policy‐level barrier to autonomously desired care. We review the clinical and ethical implications of the current Medicaid sterilization policy. After discussing the utility and impact of waiting periods for other surgical procedures, we explore the (...) psychology of time required for decision‐making and consider scientific understanding of regret. We argue that the current Medicaid sterilization waiting period is clinically and ethically unjustifiable and that the policy ought to be revised in light of the goals, preferences, and concerns of the people most affected by it. While the need for continued protection against coercion remains, the current mandated waiting period does little to enforce the high‐quality shared decision‐making that is desired for sterilization counseling. (shrink)

This paper looks at the ethics of opt-in vs. opt-out of organ donation as Scotland has transitioned its systems to promote greater organ availability. We first analyse studies that compare the donation rates in other regions due to such a system switch and find that organ increase is inconclusive and modest at best. This is due to a lack of explicit opt-out choices resulting in greater resistance and family override unless there are infrastructures and greater awareness to support such change. (...) The paper then looks at the difference between informed consent of the opt-in vs. presumed consent in the opt-out approaches. Patient autonomy and dignity are better reflected with informed consent. Eighteen months have passed since the new organ donation policy has come into effect, this paper recommends more research into organ donors’ psychological motivations to help governments and the healthcare profession obtain more organs for transplantation. (shrink)

The COVID-19 pandemic has been overwhelming public health-care systems around the world. With demand exceeding the availability of medical resources in several regions, hospitals have been forced to invoke triage. To ensure that this difficult task proceeds in a fair and organised manner, governments scrambled experts to draft triage guidelines under enormous time pressure. Although there are similarities between the documents, they vary considerably in how much weight their respective authors place on the different criteria that they propose. Since most (...) of the recommendations do not come with ethical justifications, analysing them requires that one traces back these criteria to their underlying theories of distributive justice. In the literature, COVID-19 triage has been portrayed as a value conflict solely between utilitarian and egalitarian elements. While these two accounts are indeed the main antipodes, I shall show that in fact all four classic theories of distributive justice are involved: utilitarianism, egalitarianism, libertarianism, and communitarianism. Detecting these in the documents and classifying the suggested criteria accordingly enables one to understand the balancing between the different approaches to distributive justice—which is crucial for both managing the current pandemic and in preparation for the next global health crisis. (shrink)

Deception is common in dementia care, although its moral legitimacy is questionable. This paper conceptually clarifies when does dementia care involve deception and argues that care ethics is an appropriate ethical framework to guide dementia care compared with the mainstream ethical theories that emphasize abilities. From a perspective of care ethics, this paper claims that morally defensible deception is context-specific, embodied as a caring process that needs to be identified through instant, creative and interactive care procedures. According to this argument, (...) it further analyses and concludes the moral rationality of deception in five common cases. While deception is morally justified in many situations, another concern is that it is usually not the last resort but a means of convenience. As the ability to interact, autonomy and dignity of persons with dementia (PWDs) are generally ignored; nurses need more training and education to master the essential procedures to ensure that the value of authenticity and autonomy is maintained and considered throughout dementia care. (shrink)

Phenomenology gives rise to certain ontological considerations that have far-reaching implications for standard conceptions of patient autonomy in medical ethics, and, as a result, the obligations of and to patients in clinical decision-making contexts. One such consideration is the phenomenological reduction in classical phenomenology, a core feature of which is the characterisation of our primary experiences as immediately and inherently meaningful. This paper builds on and extends the analyses of the phenomenological reduction in the works of Husserl, Heidegger, and Merleau-Ponty (...) in order to identify and explain its implications for our current understanding of the principle of respect for patient autonomy and the norms of clinical decision making. (shrink)

“Wicked” problems are characterized by intractable complexity, uncertainty, and conflict between individuals or institutions, and they inhabit almost every corner of medical ethics. Despite wide acceptance of the same ethical principles, we nevertheless disagree about how to formulate such problems, how to solve them, what would _count_ as solving them, or even what the possible solutions _are_. That is, we don’t always know how best to implement ethical ideals in messy real-world contexts. I sketch an implementation framework for medical ethics (...) that can help clarify wicked problems and organize further ethics research toward their resolutions. This framework describes the procedural variables that work alongside substantive ethical ideals to deliver ethical decisions in complex real-world situations. Using controversial GM mosquito research as an example, I illustrate how the generalizable relationships between the variables clarify emerging ethical guidelines of research governance and provide a pathway to extend these guidelines in a way consistent with our ethical intuitions across a wide range of research and public health ethics. (shrink)

Background Protecting a person’s right to privacy and confidentiality is important in healthcare services. As future health professionals, nursing students should bear the same responsibility as qualified health professionals in protecting patient privacy. Objectives To investigate nursing students’ practices of patient privacy protection and to identify factors associated with their practices. Research design A cross-sectional study design was adopted. A two-part survey was used to collect two types of data on nursing students: (1) personal characteristics, including demographics, clinical experience and (...) use of information and communication technology and social media and (2) practice of patient privacy protection, collected using the Patient Privacy Scale. Participants and research context: A total of 319 nursing students aged 18 or above, studying pre-registration nursing programmes and who had attended at least one block of clinical placement, were recruited from a university in Hong Kong. Ethical considerations The study received ethical approval from the Survey and Behavioural Research Ethics Committee of the Chinese University of Hong Kong. The participants were informed of the study aim and written consent was obtained before completing the survey. Findings: The mean total score on the Patient Privacy Scale was 119.7 out of 135. Nursing students who were regular users of Instagram and those who had never taken photographs with patients and hence did not need to obtain patient consent were associated with better practices of patient privacy protection (higher total scores on the Patient Privacy Scale). Conclusions The findings improve our understanding of nursing students’ practice of patient privacy protection and the associated factors. This will inform the development and revision of current strategies to enhance nursing students’ practice of patient privacy protection, especially their use of social media. (shrink)

BackgroundFor children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a (...) life-limiting condition who is unable to participate in decision-making for his/herself.MethodsThis qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician.ResultsTwo key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: there is a spectrum of paediatricians’ roles and responsibilities in decision-making, and the specific influences on paediatricians’ choice of approach for end-of-life decisions. In relation to, analysis showed four distinct approaches: non-directed, joint, interpretative, and directed. In relation to, the common factors were: harm to the child, possible psychological harm to parents, parental preferences in decision-making, and resource allocation.ConclusionsDespite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians’ considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making.Trial registration: Not applicable. (shrink)

Informed consent is at the core of the clinical relationship. With the introduction of machine learning in healthcare, the role of informed consent is challenged. This paper addresses the issue of whether patients must be informed about medical ML applications and asked for consent. It aims to expose the discrepancy between ethical and practical considerations, while arguing that this polarization is a false dichotomy: in reality, ethics is applied to specific contexts and situations. Bridging this gap and considering the whole (...) picture is essential for advancing the debate. In the light of the possible future developments of the situation and the technologies, as well as the benefits that informed consent for ML can bring to shared decision-making, the present analysis concludes that it is necessary to prepare the ground for a possible future requirement of informed consent for medical ML. (shrink)

Cost conversations are essential to informed consent because patients have a right to information that they think is relevant, and patients overwhelmingly report that cost information is relevant to their medical decisions. Providers have an ethical responsibility to provide necessary information for informed consent, and therefore must discuss costs. The Shared Decision Making model is ideal for enabling this exchange of information, and decision aids are also helpful. Although barriers exist, many useful tools can help providers fulfill this obligation, and (...) encouraging progress is being made to improve cost transparency from insurers and facilities. (shrink)

Over the last two decades, there was an upsurge of research and innovation in biotechnology and related fields, leading to exciting new discoveries in areas such as the engineering of biological processes, gene editing, stem cell research, CRISPR-Cas9 technology, Synthetic Biology, recombinant DNA, LMOs and GMOs, to mention only a few. At the same time, these advances generated concerns about biosafety, biosecurity and adverse impacts on biodiversity and the environment, leading to the establishment of Research Ethics Committees (RECs) at Higher (...) Education and Research Institutions dedicated to reviewing research with implications for biosafety and the environment. -/- These Biosafety and Environment Research Ethics Committees, referred to as EBRECs, are in the early stages of their establishment and formalisation, and there is much uncertainty about their composition, scope, procedures of decision-making and the principles that should guide their deliberations and assessments. In many respects, EBRECs are venturing into uncharted territory, facing a very wide range of complex research fields, far-reaching research practices and deep concerns new to Review Boards, raising the question to what extent EBRECs can fall back on the fairly well-established principles and procedures of RECs focusing on Human, Health or Animal research, and to what extent they need new or adapted principles and procedures. -/- Against this background, I set out to answer the following three main research questions in this thesis: 1. What is the current state of ethical principles for ethics reviews in the field of environmental and biosafety research ethics? Which principles are currently used in this context, and how? 2. What are the shortcomings of the current principles used by EBRECs and how can they be overcome? 3. What ethical principles must be adopted by environmental and biosafety research ethics committees and guide them in their decision-making? -/- In order to prepare the ground and set the scene for my discussion of these questions, I also formulated four supporting research questions: i. What is environmental research ethics in action? ii. What is biosafety research ethics in action? iii. How are environmental and biosafety ethics related to one another? iv. How should the guidelines and ethical principles related to these two overlapping fields be implemented in the ethics review process? Following my introduction and problem statement in Chapter 1, I devoted Chapters 2 and 3 to an overview of my supporting questions to set the scene for Environmental and Biosafety Research Ethics. In Chapter 4, I turned to my main research question with a discussion of national and international declarations, frameworks and legislation and an investigation of principles in the different research areas to get a picture of applicable principles that can guide EBRECs. -/- The main finding of my thesis is that due to the complexity of EBR, different categories of principles could be the solution for EBRECs. I elaborate on this in Chapter 5, my concluding chapter, in which I also propose a list of core principles that can serve as an accessible and easy-to-use guide for EBRECs in their decision-making. In this proposal, I cluster different kinds of principles in terms of four categories: 1. Principles as a Moral Concept 2. Principles as a Social Concept 3. Principles as a Legal Concept 4. Principles as a Safety Concept . (shrink)

According to the widely accepted principles of beneficence and distributive justice, I argue that healthcare providers and facilities have an ethical duty to reduce the ecological footprint of the services they provide. I also address the question of whether the reductions in footprint need or should be patient-facing. I review Andrew Jameton and Jessica Pierce’s claim that achieving ecological sustainability in the healthcare sector requires rationing the treatment options offered to patients. I present a number of reasons to think that (...) we should not ration health care to achieve sufficient reductions in a society’s overall consumption of ecological goods. Moreover, given the complexities of ecological rationing, I argue that there are good reasons to think that the ethical duty to reduce the ecological footprint of health care should focus on only nonpatient-facing changes. I review a number of case studies of hospitals who have successfully retrofitted facilities to make them more efficient and reduced their resource and waste streams. (shrink)

Background:Research Ethics Committees (RECs) or their equivalent review applications for prospective research with human participants. Reviewers use universally agreed principlesi to make decisions...

The rapid growth of pharmaceutical markets in the 20th century has increased the demand for human research participants in clinical trials. However, with the globalization of clinical research, most clinical trials are conducted in low-income countries (LICs) with political and economic instability, and lack of basic healthcare, but easy access to human subjects. This paper explores the unique ethical challenges faced during the pre-enrollment phase of cross-cultural research in a country like Pakistan, and how these challenges make the Pakistani population (...) vulnerable to exploitation. It also outlines recommendations regarding conducting research in Pakistan within ethical parameters adopted according to local culture. This discussion is important because researchers must focus on the pre-enrollment phase of the research process for it’s cultural suitability and acceptability so that the research conducted is credible and valid and has social value for the research population. (shrink)

Conversational artificial intelligence (CAI) presents many opportunities in the psychotherapeutic landscape—such as therapeutic support for people with mental health problems and without access to care. The adoption of CAI poses many risks that need in-depth ethical scrutiny. The objective of this paper is to complement current research on the ethics of AI for mental health by proposing a holistic, ethical, and epistemic analysis of CAI adoption. First, we focus on the question of whether CAI is rather a tool or an (...) agent. This question serves as a framework for the subsequent ethical analysis of CAI focusing on topics of (self-) knowledge, (self-)understanding, and relationships. Second, we propose further conceptual and ethical analysis regarding human-AI interaction and argue that CAI cannot be considered as an equal partner in a conversation as is the case with a human therapist. Instead, CAI’s role in a conversation should be restricted to specific functions. (shrink)

Research Ethics, Volume 18, Issue 3, Page 210-225, July 2022. Interview-based research in multilingual situations can present researchers with specific ethical challenges relating to language-based power play, data handling and presentation. Studies indicate favouring the L1 as an interviewing language may produce better quality data, but external pressures can favour English as the dominant research language. This article examines researcher perceptions and experiences of the ethical consequences of language choice and the practical issues involved. Interviews were conducted with five European (...) researchers working on an interview-based project with experiences of diverse interviewing scenarios. The four moral principles of respect for autonomy, justice, beneficence and non-maleficence were used as a framework for analysis. The analysis revealed a nuanced picture of ethical issues in both L1- and English-oriented scenarios. This included potential misrepresentation and deculturalisation of the data in the former, and language-based power asymmetries in the latter. The findings highlight the importance of documenting ethics-related methodological details of language use, and advocates publication practices favouring the inclusion and foregrounding of L1 data. (shrink)

Machine intelligence already helps medical staff with a number of tasks. Ethical decision-making, however, has not been handed over to computers. In this proof-of-concept study, we show how an algorithm based on Beauchamp and Childress’ prima-facie principles could be employed to advise on a range of moral dilemma situations that occur in medical institutions. We explain why we chose fuzzy cognitive maps to set up the advisory system and how we utilized machine learning to train it. We report on the (...) difficult task of operationalizing the principles of beneficence, non-maleficence and patient autonomy, and describe how we selected suitable input parameters that we extracted from a training dataset of clinical cases. The first performance results are promising, but an algorithmic approach to ethics also comes with several weaknesses and limitations. Should one really entrust the sensitive domain of clinical ethics to machine intelligence? (shrink)

Assessing the risk-benefit ratio has always been considered key in designing clinical trials. These benefits can be diverse and may include social value and psychological benefits. When it comes to...

The standard account of informed consent has recently met serious criticism, focused on the mismatch between its implications and widespread intuitions about the permissibility of conducting research and providing treatment under conditions of partial knowledge. Unlike other critics of the standard account, we suggest an account of the relations between autonomy, ignorance, and valid consent that avoids these implausible implications while maintaining the standard core idea, namely, that the primary purpose of the disclosure requirement of informed consent is to prevent (...) autonomy-undermining ignorance. The problem with the standard account, we argue, is that it fails to distinguish between different forms of ignorance–in particular, error and suspending ignorance–that have very different effects on individuals’ ability to provide valid consent. While error often undermines our ability to provide valid consent, suspending ignorance, we argue, does not. Once the moral weight of this distinction is appreciated, it becomes apparent that valid informed consent requires far less knowledge than suggested by the standard account. (shrink)