Extended Reality (XR) systems, such as Virtual Reality (VR) and Augmented Reality (AR), provide a digital simulation either of a complete environment, or of particular objects within the real world. Today, XR is used in a wide variety of settings, including gaming, design, engineering, and the military. In addition, XR has been introduced into psychology, cognitive sciences and biomedicine for both basic research as well as diagnosing or treating neurological and psychiatric disorders. In the context of XR, the simulated ‘reality’ (...) can be controlled and people may safely learn to cope with their feelings and behavior. XR also enables to simulate environments that cannot easily be accessed or created otherwise. Therefore, Extended Reality systems are thought to be a promising tool in the resocialization of criminal offenders, more specifically for purposes of risk assessment and treatment of forensic patients. Employing XR in forensic settings raises ethical and legal intricacies which are not raised in case of most other healthcare applications. Whereas a variety of normative issues of XR have been discussed in the context of medicine and consumer usage, the debate on XR in forensic settings is, as yet, straggling. By discussing two general arguments in favor of employing XR in criminal justice, and two arguments calling for caution in this regard, the present paper aims to broaden the current ethical and legal debate on XR applications to their use in the resocialization of criminal offenders, mainly focusing on forensic patients. (shrink)

On March 11, 2020 the World Health Organization classified COVID‐19, caused by Sars‐CoV‐2, as a pandemic. Although not much was known about the new virus, the first outbreaks in China and Italy showed that potentially a large number of people worldwide could fall critically ill in a short period of time. A shortage of ventilators and intensive care resources was expected in many countries, leading to concerns about restrictions of medical care and preventable deaths. In order to be prepared for (...) this challenging situation, national triage guidance has been developed or adapted from former influenza pandemic guidelines in an increasing number of countries over the past few months. In this article, we provide a comparative analysis of triage recommendations from selected national and international professional societies, including Australia/New Zealand, Belgium, Canada, Germany, Great Britain, Italy, Pakistan, South Africa, Switzerland, the United States, and the International Society of Critical Care Medicine. We describe areas of consensus, including the importance of prognosis, patient will, transparency of the decision‐making process, and psychosocial support for staff, as well as the role of justice and benefit maximization as core principles. We then probe areas of disagreement, such as the role of survival versus outcome, long‐term versus short‐term prognosis, the use of age and comorbidities as triage criteria, priority groups and potential tiebreakers such as ‘lottery’ or ‘first come, first served’. Having explored a number of tensions in current guidance, we conclude with a suggestion for framework conditions that are clear, consistent and implementable. This analysis is intended to advance the ongoing debate regarding the fair allocation of limited resources and may be relevant for future policy‐making. (shrink)

Artificial intelligence (AI) systems are increasingly being used in healthcare, thanks to the high level of performance that these systems have proven to deliver. So far, clinical applications have focused on diagnosis and on prediction of outcomes. It is less clear in what way AI can or should support complex clinical decisions that crucially depend on patient preferences. In this paper, we focus on the ethical questions arising from the design, development and deployment of AI systems to support decision-making around (...) cardiopulmonary resuscitation and the determination of a patient’s Do Not Attempt to Resuscitate status (also known as code status). The COVID-19 pandemic has made us keenly aware of the difficulties physicians encounter when they have to act quickly in stressful situations without knowing what their patient would have wanted. We discuss the results of an interview study conducted with healthcare professionals in a university hospital aimed at understanding the status quo of resuscitation decision processes while exploring a potential role for AI systems in decision-making around code status. Our data suggest that (1) current practices are fraught with challenges such as insufficient knowledge regarding patient preferences, time pressure and personal bias guiding care considerations and (2) there is considerable openness among clinicians to consider the use of AI-based decision support. We suggest a model for how AI can contribute to improve decision-making around resuscitation and propose a set of ethically relevant preconditions—conceptual, methodological and procedural—that need to be considered in further development and implementation efforts. (shrink)

Artificial intelligence (AI) systems are quickly gaining ground in healthcare and clinical decision-making. However, it is still unclear in what way AI can or should support decision-making that is based on incapacitated patients’ values and goals of care, which often requires input from clinicians and loved ones. Although the use of algorithms to predict patients’ most likely preferred treatment has been discussed in the medical ethics literature, no example has been realised in clinical practice. This is due, arguably, to the (...) lack of a structured approach to the epistemological, ethical and pragmatic challenges arising from the design and use of such algorithms. The present paper offers a new perspective on the problem by suggesting that preference predicting AIs be viewed as sociotechnical systems with distinctive life-cycles. We explore how both known and novel challenges map onto the different stages of development, highlighting interdisciplinary strategies for their resolution. (shrink)

What has the past reaction to the COVID-19 pandemic taught us? We have seen that many low and middle-income countries (LMICs) still lack access to vaccines, and it seems little progress has been made in the last few months and year. This article discusses whether the current strategies, most notably, vaccine donations by the international community and the COVID-19 global access facility COVAX, offer meaningful solutions to tackle the problem. At the centre of our analysis, we compare the concepts of (...) “donations” and “charity” with “vaccine equity” and the “empowerment” of poorer countries. We suggest that the achievement of fair global vaccine production requires that our global approach is supportive of the idea of empowerment. We, therefore, need structural reforms, which would most importantly include capacity building, to positively impact this goal and to take the interests of the global poor seriously. (shrink)

Risk and crisis communication (RCC) is a current ethical issue subject to controversy, mainly due to the tension between individual liberty (a core component of fairness) and effectiveness. In this paper we propose a consistent definition of the RCC process in public health emergencies (PHERCC), which comprises six key elements: evidence, initiator, channel, publics, message, and feedback. Based on these elements and on a detailed analysis of their role in PHERCC, we present an ethical framework to help design, govern and (...) evaluate PHERCC strategies. The framework aims to facilitate RCC, incorporating effectiveness, autonomy, and fairness. It comprises five operational ethical principles: openness, transparency, inclusivity, understandability, and privacy. The resulting matrix helps understanding the interplay between the PHERCC process and the principles of the framework. The paper includes suggestions and recommendations for the implementation of the PHERCC matrix. (shrink)

Decision-making capacity is the gatekeeping element for a patient’s right to self-determination with regard to medical decisions. A DMC evaluation is not only conducted on descriptive grounds but is an inherently normative task including ethical reasoning. Therefore, it is dependent to a considerable extent on the values held by the clinicians involved in the DMC evaluation. Dealing with the question of how to reasonably support clinicians in arriving at a DMC judgment, a new tool is presented that fundamentally differs from (...) existing ones: the U-Doc. By putting greater emphasis on the judgmental process rather than on the measurement of mental abilities, the clinician as a decision-maker is brought into focus, rendering the tool more of an evaluation guide than a test instrument. In a qualitative study, the perceived benefits of and difficulties with the tool have been explored. The findings show on the one hand that the evaluation aid provides basic orientation, supports a holistic perspective on the patient, sensitizes for ethical considerations and personal biases, and helps to think through the decision, to argue, and to justify one’s judgment. On the other hand, the room for interpretation due to absent operationalisations, related ambiguities, and the confrontation with one’s own subjectivity may be experienced as unsettling. (shrink)

What has the past reaction to the COVID-19 pandemic taught us? We have seen that many low and middle-income countries (LMICs) still lack access to vaccines, and it seems little progress has been made in the last few months and year. This article discusses whether the current strategies, most notably, vaccine donations by the international community and the COVID-19 global access facility COVAX, offer meaningful solutions to tackle the problem. At the centre of our analysis, we compare the concepts of (...) “donations” and “charity” with “vaccine equity” and the “empowerment” of poorer countries. We suggest that the achievement of fair global vaccine production requires that our global approach is supportive of the idea of empowerment. We, therefore, need structural reforms, which would most importantly include capacity building, to positively impact this goal and to take the interests of the global poor seriously. (shrink)

In everyday conversations, professional codes, policy debates, and academic literature, the concept of respect is referred to frequently. Bioethical arguments in recent decades equate the idea of respect for persons with individuals who are capable of autonomous decision-making, with the focus being explicitly on ‘autonomy,’ ‘capacity,’ or ‘capability.’ In much of bioethics literature, respect for persons is replaced by respect for autonomy. Though the unconditional respect for persons and their autonomy (irrespective of actual decision-making capacity) is established in Kantian bioethics, (...) current argument and debates often revolve around a thin concept of autonomy, focusing on capacity and capability: persons are owed respect because they are ‘rational beings’ or with a focus on ‘agency’ and ‘decision-making abilities.’ However, these aspects alone are insufficient while engaging the concept of respect for persons, particularly in healthcare settings. This paper sets out to explore if the concept of respect for persons—as opposed to a thin concept of autonomy—could help us engage better in healthcare practices. We shall probe the practical value of the experiential aspect of respect—understood as the recognition of persons as respect-worthy through certain dispositions and deliberative acts—by reflecting on instances in clinical practice that tend to be dismissed as negligible or even unavoidable in a stressful environment such as a busy hospital. We shall argue that these instances are far from trivial but carry moral significance and express an unacceptable—disrespectful—attitude that can compromise the moral habitus in hospital settings. In our conclusion, we call for practicing recognition respect in the health professional–patient encounter by focussing on manners, attitudes, and behaviors. Furthermore, we call for continuous medical ethics education programs to address the moral significance of disrespectful behaviors and their manifestations in particular socio-cultural contexts. (shrink)

Large language models (LLMs) have now entered the realm of medical ethics. In a recent study, Balaset alexamined the performance of GPT-4, a commercially available LLM, assessing its performance in generating responses to diverse medical ethics cases. Their findings reveal that GPT-4 demonstrates an ability to identify and articulate complex medical ethical issues, although its proficiency in encoding the depth of real-world ethical dilemmas remains an avenue for improvement. Investigating the integration of LLMs into medical ethics decision-making appears to be (...) an interesting avenue of research. However, despite the promising trajectory of LLM technology in medicine, it is crucial to exercise caution and refrain from attributing their expertise to medical ethics. Our thesis follows an examination of the nature of expertise and the epistemic limitations that affect LLM technology. As a result, we propose two more fitting applications of LLMs in medical ethics: first, as tools for mining electronic health records or scientific literature, thereby supplementing evidence for resolving medical ethics cases, and second, as educational platforms to foster ethical reflection and critical thinking skills among students and residents. The integration of LLMs in medical ethics, while promising, requires careful consideration of their epistemic limitations. Consequently, a well-considered definition of their role in ethically sensitive decision-making is crucial. (shrink)

Artificial intelligence has found its way into many areas of human life, serving a range of purposes. Sometimes AI tools are designed to help humans eliminate high-volume, tedious, routine tas...

ver since the traditional criteria for medical decision-making capacity (understanding, appreciation, reasoning, evidencing a choice) were formulated, they have been criticized for not taking sufficient account of emotions or values that seem, according to the critics and in line with clinical experiences, essential to decision-making capacity. The aim of this paper is to provide a nuanced and structured overview of the arguments provided in the literature emphasizing the importance of these factors and arguing for their inclusion in competence evaluations. Moreover, (...) a broader reflection on the findings of the literature is provided. Specific difficulties of formulating and measuring emotional and valuational factors are discussed inviting reflection on the possibility of handling relevant factors in a more flexible, case-specific, and context-specific way rather than adhering to a rigid set of operationalized criteria. (shrink)

Digital Health Technologies (DHTs) are currently the subject of much debate both in terms of their technological frontiers as well as their ethical, legal and societal implications (ELSI). Regulation of such technologies as medical devices currently lacks behind their level of adoption. Digital Twins are the next evolution step of such DHTs and provide an opportunity to anticipate and act on ELSI before adoption again leaps before the necessary review. This paper introduces the concept and use cases of digital twins (...) in medicine, then frames the debate through the lens of related technologies, machine learning and personalized medicine, and maps ethical challenges stemming from those. Finally, we lay out how digital twins may change and challenge the future practice of medicine. (shrink)

Shortages in the number of donated organs after death and the growing number of end-stage organ failure patients on waiting lists call for looking at alternatives to increase the number of organs that could be used for transplantation purposes. One option that has led to a legal and ethical debate is to have regulated markets in human organs. Opponents of a market in human organs offer different arguments that are mostly founded on contingent factors that can be adjusted. However, some (...) authors have asked the question whether we still have a reason to believe that there is something wrong with offering human organs for sale for transplantation purposes, even if the circumstances under which the practice takes place are improved. One prominent argument regarding this appeals to the notion of human dignity. It is argued that organ selling violates human dignity. This paper presents a systematic discussion of dignity-based arguments in the organ selling debate, and then develops a social account of dignity. It is argued that allowing the practice of organ selling inherently runs the risk of promoting the notion that some persons have less worth than others and that persons have a price, which is incompatible with dignity. The approach is defended against possible objections and it is shown that it can capture the notion that autonomy is linked to human dignity in important ways, while dignity at the same time can constrain the autonomous choices of persons with regards to certain practices. (shrink)

Nanomedicine plays a prominent role among emerging technologies. The spectrum of potential applications is as broad as it is promising. It includes the use of nanoparticles and nanodevices for diagnostics, targeted drug delivery in the human body, the production of new therapeutic materials as well as nanorobots or nanoprotheses. Funding agencies are investing large sums in the development of this area, among them the European Commission, which has launched a large network for life-sciences related nanotechnology. At the same time government (...) agencies as well as the private sector are putting forward reports of working groups that have looked into the promises and risks of these developments. This paper will begin with an introduction to the central ethical themes as identified by selected reports from Europe and beyond. In a next step, it will analyse the most frequently invoked ethical concerns–risk assessment and management, the issues of human identity and enhancement, possible implications for civil liberties (e.g. nanodevices that might be used for covert surveillance), and concerns about equity and fair access. Although it seems that the main ethical issues are not unique to nanotechnologies, the conclusion will argue against shrugging them off as non-specific items that have been considered before in the context of other biomedical technologies, such as gene therapy or xenotransplantation. Rather, the paper will call on ethicists to help foster a rational, fair and participatory discourse on the different potential applications of nanotechnologies in medicine, which can form the basis for informed and responsible societal and political decisions. (shrink)

Kantian deontology is one of three classic moral theories, among virtue ethics and consequentialism. Issues in medical ethics are frequently addressed within a Kantian paradigm, at least – although not exclusively – in European medical ethics. At the same time, critical voices have pointed to deficits of Kantian moral philosophy which must be examined and discussed. It is argued that taking concrete situations and complex relationships into account is of paramount importance in medical ethics. Encounters between medical or nursing staff (...) and patients are rarely symmetrical relationships between autonomous and rational agents. Kantian ethics, the criticism reads, builds on the lofty ideal of such a relationship. In addition to the charge of an individualist and rationalist focus on autonomy, Kantian ethics has been accused of excluding those not actually in possession of these properties or of its rigorism. It is said to be focussed on laws and imperatives to an extent that it cannot appreciate the complex nuances of real conflicts. As a more detailed analysis will show, these charges are inadequate in at least some regards. This will be demonstrated by drawing on the Kantian notion of autonomy, the role of maxims and judgment and the conception of duties, as well as the role of emotions. Nevertheless the objections brought forward against Kantian moral theory can help determine, with greater precision, its strengths and shortcomings as an approach to current problems in medical ethics. (shrink)

In our recent article ‘The Ethics of the Algorithmic Prediction of Goal of Care Preferences: From Theory to Practice’1, we aimed to ignite a critical discussion on why and how to design artificial intelligence (AI) systems assisting clinicians and next-of-kin by predicting goal of care preferences for incapacitated patients. Here, we would like to thank the commentators for their valuable responses to our work. We identified three core themes in their commentaries: (1) the risks of AI paternalism, (2) worries about (...) attacks to our humanity stemming from the use of AI and (3) the possibility of designing AI systems for more relevant use cases than the one we consider in our work. We shall focus on these themes, leaving aside some other interesting suggestions, given the limited space available for our response. Diaz Milian and Bhattacharyya discuss the risks of AI paternalism highlighting how the use of an AI to predict goal of care preferences may incentivise clinicians and surrogates to shift the burden of decision making to the machine.2 In particular, ‘[i]f the AI-generated response is given priority above the other agents’2 and the AI makes decisions autonomously, then ‘AI paternalism’ would emerge.2 Against this possibility, the authors suggest four safeguards to be implemented in the AI life-cycle.2 These are procedures that may improve the trustworthiness of the AI and human control over it.3 We agree that it is important …. (shrink)

Equal access to vaccines has been one of the key ethical challenges during the COVID-19 pandemic. Most scholars consider the massive purchase and hoarding of vaccines by high-income countries, especially at the beginning of the pandemic, to be unjust towards the vulnerable living in low-income countries. A recent proposal by Andreas Albertsen of a vaccine tax has been put forward to remedy this problem. Under such a scheme, high-income countries would pay a contribution, conceptualised as a vaccine tax, dedicated to (...) buying vaccines and distributing them to low and middle-income countries. Proceeding from this proposal, we critically assess the feasibility of a vaccine tax and suggest how to conceptualise and implement a vaccine tax in practice. We present our ‘VaxTax model’ and explore its comparative advantages and disadvantages while considering other possible measures to address the global vaccine access problem, also in view of future pandemics and disease outbreaks. (shrink)

Living organ donation has developed into an important therapeutic option in transplantation medicine. However, there are some medico-ethical problems that come along with the increasing reliance on this organ source. One of these concerns is based on the observation that many more women than men function as living organ donors. Whereas discrimination and differential access have been extensively discussed in the context of cadaveric transplantation and other areas of health care, the issue of gender imbalance in living organ donation has (...) received less attention. This paper presents relevant data from the Eurotransplant and UNOS transplantation systems and discusses possible explanations for the documented gender discrepancies. The conclusion calls for are view of existing practice guidelines in order to secure effective protection of particularly vulnerable potential donors and an equitable donor-recipient-ratio in living organ donation. (shrink)

Background: It is often claimed that a regulated kidney market would significantly reduce the kidney shortage, thus saving or improving many lives. Data are lacking, however, on how many people would consider selling a kidney in such a market. Methods: A survey instrument, developed to assess behavioural dispositions to and attitudes about a hypothetical regulated kidney market, was given to Swiss third-year medical students. Results: Respondents’ median age was 23 years. Their socioeconomic status was high or middle. 48 considered selling (...) a kidney in a regulated kidney market, of whom 31 would sell only to overcome a particularly difficult financial situation. High social status and male gender was the strongest predictor of a disposition to sell. 32 of all respondents supported legalising a regulated kidney market. This attitude was not associated with a disposition to sell a kidney. 5 respondents endorsed a market and considered providing a kidney to a stranger if and only if paid. 4 of those 5 would sell only under financial duress. Conclusions: Current understanding of a regulated kidney market is insufficient. It is unclear whether a regulated market would result in a net gain of kidneys. Most possible kidney vendors would only sell in a particularly difficult financial situation, raising concerns about the validity of consent and inequities in the provision of organs. Further empirical and normative analysis of these issues is required. Any calls to implement and evaluate a regulated kidney market in pilot studies are therefore premature. (shrink)

This article tries to present a broad view on the values and ethicalissues that are at stake in efforts to rationalize health policy on thebasis of economic evaluations (like cost-effectiveness analysis) andrandomly controlled clinical trials. Though such a rationalization isgenerally seen as an objective and `value free' process, moral valuesoften play a hidden role, not only in the production of `evidence', butalso in the way this evidence is used in policy making. For example, thedefinition of effectiveness of medical treatment or (...) health care serviceis heavily dependent on dominant individual or social views about thegoals of the particular treatment or service. There is also a concernthat a reliance on EBM in health policy will occur at the expense ofwidely shared social values like equity and solidarity. Moreover, thereis a concern that when economic considerations and rational proceduresbecome more influential, various `outside' groups third parties likeinsurance companies and policy makers will get a stronger influence onmedical practice which may lead to a change in the patient-providerrelationship. The authors conclude that social values and patientpreference should be explicitly addressed when health policy making isbased on economic and other scientific evidence. (shrink)

BackgroundThe need for an ethical debate about the use of coercion in intensive care units (ICU) may not be as obvious as in other areas of medicine, such as psychiatry. Coercive measures are often necessary to treat critically ill patients in the ICU. It is nevertheless important to keep these measures to a minimum in order to respect the dignity of patients and the cohesion of the clinical team. A deeper understanding of what patients and their relatives perceive during their (...) ICU stay will shed different light on intensive care management. Patients' experiences of loss of control, dependency and abandonment may lead to a new approach towards a broader approach to the concept of coercion in intensive care. The aim of our research is to explore the experiences of patients and relatives in the ICU and to determine when it might be possible to reduce feelings and memories of coercion.MethodsWe conducted and analysed 29 semi-structured interviews with patients and relatives who had been in the ICU a few months previously. Following a coding and categorisation process in MAXQDA™, a rigorous qualitative methodology was used to identify themes relevant to our research.ResultsFive main themes emerged: memory issues; interviewees’ experiences of restricting measures and coercive treatment; patients’ negative perception of situational and relational dependency with the risk of informal coercion; patients’ perceptions of good care in a context of perceived dependency; progression from perception of coercion and dependency to respect for the person. All patients were grateful to have survived. However, coercion in the form of restraint, restriction of movement, and coercive treatment in the ICU was also acknowledged by patients and relatives. These included elements of informal coercion beyond restraints, such as a perceived negative sense of dependence, surrender, and asymmetrical interaction between the patient and health providers.ConclusionsTo capture the full range of patients' experiences of coercion, it is necessary to expand the concept of coercion to include less obvious forms of informal coercion that may occur in dependency situations. This will help identify solutions to avoid or reduce negative recollections that may persist long after discharge and negatively affect the patients' quality of life. (shrink)

Free and informed consent is generally acknowledged as the legal andethical basis for living organ donation, but assessments of livingdonors are not always an easy matter. Sometimes it is necessary toinvolve psychosomatics or ethics consultation to evaluate a prospectivedonor to make certain that the requirements for a voluntary andautonomous decision are met. The paper focuses on the conceptualquestions underlying this evaluation process. In order to illustrate howdifferent views of autonomy influence the decision if a donor's offer isethically acceptable, three cases (...) are presented – from Germany, theUnited States, and India. Each case features a person with questionabledecision-making capacity who offered to donate a kidney for a siblingwith severe renal insufficiency. Although the normative framework issimilar in the three countries, different or sometimes even contraryarguments for and against accepting the offer were brought forward. Thesubsequent analysis offers two explanations for the differences inargumentation and outcome in spite of the shared reference to autonomyas the guiding principle: (1) Decisions on the acceptability of a livingdonor cannot simply be deducted from the principle of autonomy but needto integrate contextual information; (2) understandings of the wayautonomy should be contextualized have an important influence on theevaluation of individual cases. Conclusion: Analyzing the conceptualassumptions about autonomy and its relationship to contextual factorscan help in working towards more transparent and better justifieddecisions in the assessment of living organ donors. (shrink)

Transplanting organs from emotionally related donors has become a fairly routine procedure in many countries. However, donors have to be chosen carefully in order to avoid not just medically, but also morally, questionable outcomes. This paper draws attention to vulnerabilities that may affect the voluntariness of the donor's decision. Suggestions are made as to how to approach the evaluation and selection of potential donors.

ZusammenfassungDie Bestimmung der Einwilligungsfähigkeit von Patienten beinhaltet weitreichende ethische und rechtliche Implikationen. Ausreichende Klärung des Begriffs ist daher unerlässlich. Solche Bemühungen gelten vorwiegend der Definition von Kriterien hinsichtlich relevanter mentaler Fähigkeiten. Grundlegendere Aspekte werden kaum explizit besprochen, so die Frage, ob Einwilligungsfähigkeit eher eine inhärente Fähigkeit oder ein ethisches Urteil bezeichnet. Zentral bei dieser Unterscheidung ist der Stellenwert ethischer Überlegungen die Zulässigkeit fürsorglicher Bevormundung betreffend. Geht man von einer inhärenten Fähigkeit aus, schließen solche Überlegungen an die Beurteilung von Einwilligungsfähigkeit an. (...) Im Fall eines Urteils sind diese konstitutiv für das Verständnis und die Bestimmung von Einwilligungsfähigkeit. Obwohl Einwilligungsfähigkeit idealerweise als inhärente Fähigkeit gedacht wird, weist die tatsächliche Herangehensweise eher in die Richtung, sie als ethisches Urteil zu verstehen. Diese verschiedenen Tendenzen sind für konzeptuelle Kontroversen hinsichtlich des Stellenwerts risiko-relativer Beurteilungen verantwortlich. Des Weiteren muss sich die Bestimmung von Einwilligungsfähigkeit – konzipiert man sie als ethisches Urteil – nicht rigide an einer bestimmten Definition des Begriffs der Autonomiefähigkeit orientieren und vermag so mit dessen definitorischen Unklarheiten besser umzugehen. (shrink)

With advances in medical science, the concept of agency has received increasing attention in biomedical ethics. However, most of the ethical discussion around definitions of agency has focused either on patients suffering from mental disorders or on patients receiving cutting-edge medical treatments in developed countries. Very little of the discussion around concepts of agency has focused on the situation of patients suffering from common diseases that affect populations worldwide. Therefore, the most widely-used definitions of agency may be not appropriate to (...) analyse common diseases among large populations. The branch of social sciences known as development studies draw on their own definitions of the term agency that may provide a more applicable and accurate way of referring to common and general cases than the definitions currently used in bioethics. Moreover, the psychological Self-Determination Theory may improve the usefulness of these definitions in common situations. This article explains the characteristics and the shortcomings of current bioethical definitions of agency when they are applied to common medical conditions worldwide. A new, value-based concept of agency, informed by development studies, is proposed as more accurate and useful for biomedical ethics. (shrink)

In response to the COVID-19 pandemic, countries around the world developed ICU triaging guidelines. One important point of convergence was an explicit commitment to...

Comments and reports on synthetic biology often focus on the idea that this field may lead to synthetic life or life forms. Such claims attract general attention because “life” is a basic concept that is understood, interpreted and explained in multiple ways. While these different understandings of life may influence the ethical assessment of synthetic biology by experts and the public, this field might, in turn, influence how academics or the public view life. We suggest in this paper that synthetic (...) biology provides an opportunity to discuss and compare different views and explanations of the world, starting from the concept of life. We argue that a narrow focus on just one interpretation of this concept may be harmful and that people will benefit from being aware of a diversity of understandings of life because they provide answers to different questions. Moreover, the confrontation among views is important for the development of reasoning abilities, and a nuanced view on our world will be useful for integrating scientific findings and their implications into a wider context. At the same time, we should not only consider other understandings of life for our own benefit but also because a moral attitude of respect for and toleration toward others implies permission to express and maintain their views. For these reasons, we suggest that a diversity of views on life should be included in public education and in public engagement events on synthetic biology. Moreover, they should be on the research agenda of technology assessment studies within the ELSA or RRI frameworks. (shrink)

Bioethics in a globalized world is meeting a number of challenges – fundamentalism in its different forms, and a focus on economic growth neglecting issues such as equity and sustainability, being prominent among them. How well are we as bioethicists equipped to make meaningful contributions in these times? The paper identifies a number of restraints and proceeds to probe potential resources such as the capability approach, care ethics, cosmopolitanism, and pragmatism. These elements serve to outline a perspective that focuses on (...) the preconditions for flourishing human relationships as a way to address bioethical challenges in a globalized world. (shrink)

Psychotherapy is a well-established, efficacious, and fully accepted treatment for mental disorders and psychological problems. Psychotherapy is an interpersonal practice engaging patient values, interests, and personal meanings at every step. Thereby, psychotherapy abounds with moral issues. In psychotherapy ethics, numerous moral issues converge, including self-determination or autonomy, decision-making capacity and freedom of choice, coercion and constraint, medical paternalism, boundaries between health and illness, insight into illness and the need for therapy, dignity, under- and overtreatment, and much more. The Oxford Handbook (...) of Psychotherapy Ethics covers the whole range of ethical issues in the heterogenous field of psychotherapy, closing a commonly perceived gap between ethical sensitivity, technical language, and knowledge among psychotherapists. The primary audience is psychotherapists in clinical practice. Furthermore, the Oxford Handbook of Psychotherapy Ethics addresses the whole range of professionals providing mental health services beyond psychology and medicine including counselors, social workers, nurses, or ministers. The Oxford Handbook of Psychotherapy Ethics is not only intended for a clinical audience but also for a philosophical/ethical audience. The goal of the is to explicitly link the two disciplines by fostering a productive dialogue between them, enriching both the psychotherapeutic encounter and the ethical analysis and sensitivity within and outside the clinic. (shrink)

A patient’s decision-making capacity or competence is among the prerequisites for valid consent to medical treatment, and is regarded as the gatekeeping element in ensuring respect for patients’ self-determination. The issue is especially relevant in the case of vulnerable persons, such as patients who are cognitively or mentally impaired, and where medical decisions carry far-reaching consequences. As a grounding principle, DMC is a priori assumed, and challenged only when substantial doubts arise owing to observed or assumed deficiencies of the capacities (...) commonly considered relevant for competent decision making ; in this sense, the onus is on... (shrink)

Bioethics has changed considerably over the last few years. Increased global interaction, through the off-shoring of clinical trials, cross-border surrogacy, organ trafficking, and medical tourism, among others practices, has brought additional considerations to a discipline that has been, until recently, relatively contained within national borders. We aim to contribute to the discourse on exploitation and vulnerability in a way that reflects such global changes. We will explore the link between vulnerability and exploitation, and argue that exploitation can be understood as (...) taking advantage of vulnerabilities, provided we recognize that vulnerabilities are often embedded within existing structural injustices. (shrink)

This paper presents scientists’ understanding of their roles in society and corresponding responsibilities. It discusses the researchers’ perspective against the background of the contemporary literature on scientific responsibility in the social sciences and philosophy and proposes a heuristic that improves the understanding of the complexity of scientific responsibility. The study is based on qualitative interviews with senior scientists. The presented results show what researchers themselves see as their responsibilities, how they assume them, and what challenges they perceive with respect to (...) their responsibilities. Regarding the latter, the interviewed researchers highlight those aspects of responsibility that go beyond the expertise of their professional role, and thus cannot be carried by scientists alone. For example, scientists alone cannot determine the general direction science takes, or the useful application of their research. The interviewed researchers describe those challenges as responsibilities that must be shared across different societal groups. In the theoretical literature, responsibility has been described as a relation between an actor (who), the action for which someone is responsible (what), and the normative framework against which someone is responsible (why). We will draw on this concept of “relational responsibility” to identify the various actors, normative frameworks, and actions relevant to scientific responsibility. This will serve as a heuristic tool to help identify the entanglement of responsibilities spread across several societal groups. (shrink)

This article highlights major results of a study into the ethical norms and rules governing biobanks. After describing the methodology, the findings regarding four topics are presented: (1) the ownership of human biological samples held in biobanks; (2) the regulation of researchers’ use of samples obtained from biobanks; (3) what constitutes “collective consent” to genetic research, and when it is needed; and (4) benefit sharing and remuneration of research participants. The paper then summarizes key lessons to be drawn from the (...) findings and concludes by reflecting on the importance of such empirical research to inform future governance norms and practices. (shrink)

Conducting empirical research on gender in medical ethics is a challenge from a theoretical as well as a practical point of view. It still has to be clarified how gender aspects can be integrated without sustaining gender stereotypes. The developmental psychologist Carol Gilligan was among the first to question ethics from a gendered point of view. The notion of care introduced by her challenged conventional developmental psychology as well as moral philosophy. Gilligan was criticised, however, because her concept of ‘two (...) different voices’ may reinforce gender stereotypes. Moreover, although Gilligan stressed relatedness, this is not reflected in her own empirical approach, which still focuses on individual moral reflection. Concepts from social psychology can help overcome both problems. Social categories like gender shape moral identity and moral decisions. If morality is understood as being lived through actions of persons in social relationships, gender becomes a helpful category of moral analysis. Our findings will provide a conceptual basis for the question how empirical research in medical ethics can successfully embrace a gendered perspective. (shrink)

Recent scientific advances in the field of gene editing have led to a renewed discussion on the moral acceptability of human germline modifications. Gene editing methods can be used on human embryos and gametes in order to change DNA sequences that are associated with diseases. Modifying the human germline, however, is currently illegal in many countries but has been suggested as a ‘last resort’ option in some reports. In contrast, preimplantation genetic diagnosis is now a well-established practice within reproductive medicine. (...) Both methods can be used to prevent children from being born with severe genetic diseases. This paper focuses on four moral concerns raised in the debate about germline gene editing and applies them to the practice of PGD for comparison: Violation of human dignity, disrespect of the autonomy and the physical integrity of the future child, discrimination of people living with a disability and the fear of slippery slope towards immoral usage of the technology, e.g. designing children for specific third party interests. Our analysis did not reveal any fundamental differences with regard to the four concerns. We argue that with regard to the four arguments analyzed in this paper germline gene editing should be considered morally as acceptable as the selection of genomes on the basis of PGD. However, we also argue that any application of GGE in reproductive medicine should be put on hold until thorough and comprehensive laws have been implemented to prevent the abuse of GGE for non-medical enhancement. (shrink)

Matters of hospital management do not figure prominently on the medical ethics agenda. However, management decisions that have to be taken in the area of hospital care are in fact riddled with ethical questions and do have significant impact on patients, staff members, and the community being served. In this decision making process evidence based medicine plays an increasingly important role as a tool for rationalising as well as rationing health care resources. In this article, ethical issues of hospital management (...) and the role of EBM will be explored, with particular reference to disease management programs, diagnosis related groups, and clinical pathways as recent developments in the German health care system. (shrink)

As synthetic biology develops into a promising science and engineering field, we need to have clear ideas and priorities regarding its safety, security, ethical and public dialogue implications. Based on an extensive literature search, interviews with scientists, social scientists, a 4 week long public e-forum, and consultation with several stakeholders from science, industry and civil society organisations, we compiled a list of priority topics regarding societal issues of synthetic biology for the years ahead. The points presented here are intended to (...) encourage all stakeholders to engage in the prioritisation of these issues and to participate in a continuous dialogue, with the ultimate goal of providing a basis for a multi-stakeholder governance in synthetic biology. Here we show possible ways to solve the challenges to synthetic biology in the field of safety, security, ethics and the science-public interface. (shrink)

Background Prenatal genetic testing, in particular non-invasive prenatal testing (NIPT), as well as screening for risks associated with pregnancy, and counseling, play pivotal roles in reproductive healthcare, offering valuable information about the health of the fetus to expectant parents. This study aims to delve into the perspectives and experiences of women considering genetic testing and screening during pregnancy, focusing on their decision-making processes and the implications for informed consent. Methods A nationwide qualitative study was conducted in Switzerland, involving in-depth interviews (...) with women who were 1 to 2 years post-partum, covered by basic compulsory Swiss insurance, including women with a migration background. Thematic analysis was employed to identify key themes and patterns in the data. Results The findings underscore the significance of effective communication during prenatal counseling, suggesting that healthcare providers could not only convey technical information but also support women in their decision-making processes. Women need comprehensive information about genetic testing and its implications, as well as the reasons for screening during pregnancy, as there might be a need to bridge knowledge gaps and clarify misconceptions. Furthermore, the study highlights the multifaceted nature of decision-making, with women considering factors such as uncertainty, values, emotional responses, and societal support systems. The concept of acceptance emerged as a crucial theme, with some women expressing their readiness to love and accept their child, regardless of genetic anomalies or disabilities. Conclusion This study offers valuable insights into the perspectives and needs of women regarding prenatal genetic testing, screening, and counseling in Switzerland. It underscores the importance of enhancing the clinical interaction and informed consent process by providing comprehensive information, addressing misconceptions, and supporting women in decision-making about pregnancy management and the management of the child’s health, following prenatal genetic testing, including NIPT. These findings can inform healthcare providers and policymakers in improving the quality of prenatal counseling, ensuring informed consent, and supporting women in making well-informed and meaningful decisions about genetic testing, and on the use of screening during pregnancy. (shrink)

As part of the SYNBIOSAFE project, we carried out an open electronic conference (e-conference), with the aim to stimulate an open debate on the societal issues of synthetic biology in a proactive way. The e-conference attracted 124 registered participants from 23 different countries and different professional backgrounds, who wrote 182 contributions in six different categories: (I) Ethics; (II) Safety; (III) Security; (IV) IPR; (V) Governance and regulation; (VI) and Public perception. In this paper we discuss the main arguments brought up (...) during the e-conference and provide our conclusions about how the community thinks, and thinks differently on the societal impact of synthetic biology. Finally we conclude that there is a chance for an open discourse on the societal issues of synthetic biology happening, and that the rules to govern such a discourse might be set up much easier and be respected more readily than many would suggest. (shrink)

Concerns arising from global sociopolitical differences, and increasing economic and health disparities, have brought new considerations to the field of bioethics, both in terms of applications and to foundational concepts such as exploitation and vulnerability.In this paper, we aim to contribute to the discourse on exploitation and vulnerability in a way that reflects such global changes. We will explore the link between vulnerability and exploitation, and argue that exploitation can be understood as taking advantage of vulnerabilities, provided we recognize that (...) vulnerabilities are often embedded within existing structural injustices.We begin by presenting an example of organ trading, which helps to illustrate .. (shrink)

The current humanitarian use of drones is focused on two applications: disaster mapping and medical supply delivery. In response to the growing interest in drone deployment in the aid sector, we sought to develop a resource to support value sensitivity in humanitarian drone activities. Following a bottom-up approach encompassing a comprehensive literature review, two empirical studies, a review of guidance documents, and consultations with experts, this work illuminates the nature and scope of ethical challenges encountered by humanitarian organizations embarking upon (...) innovation programmes. The Framework for the Ethics Assessment of Humanitarian Drones (FEAHD) identifies five values and five key questions related to ethical considerations along the decision chain of humanitarian drone activities. It fills a gap between high-level, principle-based guidance related to humanitarian innovation, and detailed operation-oriented checklists for projects involving the use of drones. In this way, the FEAHD contributes to support value sensitivity in the humanitarian use of drones. (shrink)