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.

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)

Further discussion of the ongoing human cloning debate.In the late 1990s cloning was still the subject of passionate debate. While philosophers were crossing swords about the implications of the “Dolly technique” for the meaning of human identity, sweeping declarations were made by major international bodies such as the World Medical Association, UNESCO, and the World Health Organization that unanimously condemned human reproductive cloning as ethically unacceptable and/or contrary to human dignity. By now, the topic elicits a mere frown, sneer, sigh, (...) or yawn from most bioethicists, depending on their temperament or mood. The same may hold true for those delegates at the United Nations who sat through many sessions that included the ominous agenda item entitled “international convention against reproductive cloning of human beings”.Human cloning became an issue at the United Nations when the item was introduced at the request of France and Germany in 2001. The two countries limited their proposal to reproductive cloning. This move, although aiming quite reasonably at the formulation of a minimal consensus among member states, got at least Germany into some trouble at home, as critical voices from different parts of the political spectrum argued that Germany should rather pursue a comprehensive ban on human cloning for any purpose, which would be more in accordance with its own national …. (shrink)

As a matter of justice, what do we owe each other to promote and protect health in a population and to assist people when they are ill and disabled? This is the fundamental question of Norman Daniels’ new book on justice and health. Just health is in many ways a successor to Daniels’ seminal classic Just health care. As foreshadowed by a 2001 target article in the American Journal of Bioethics, Just health integrates Daniels’ account of the special moral importance (...) of health and healthcare with his interim work on the social determinants of health4 and the fairness of health sector reform and limit-setting in healthcare. The change of title already indicates that Just health no longer focuses solely on the provision of healthcare, but spans all socially controllable factors of health. The book’s ambitious aim is to provide an integrated theory of justice and health. (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)

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)

BackgroundPatients who follow a specific religion may experience specific moral conflicts when interacting with the health care system. Health care providers’ awareness of and sensitivity to such issues can be beneficial to patients and increase the quality of care they receive. The aims of this study were to investigate which potential ethical issues were considered to be relevant to Muslim patients and to examine if these assessments varied between Muslim non-medical, Muslim medical, and non-Muslim medical students.MethodsAn online questionnaire with n (...) = 205 students from different universities in Zurich, Switzerland was conducted. The questionnaire contained a list of ethical issues of presumed relevance to Muslim patients, which had been compiled based on a literature search and an expert consultation.ResultsMuslim non-medical students considered 33% of the ethical issues as morally problematic to Muslim patients. In contrast, Muslim medical students regarded 19%, and non-Muslim medical studen... (shrink)

The recent desperation to clone human embryos may be seriously undermining accepted ethical principles of medical research, with potentially profound wider consequencesIn her editorial in the February 2005 issue of this journal, Nikola Biller-Andorno questioned whether the effort and resources that have been invested in debates about cloning at the United Nations might have been somewhat disproportionate, if a binding universal agreement on reproductive cloning cannot be reached.1 Although most of the overt disagreement has centred around “therapeutic” cloning, rather (...) than the potential use of nuclear transfer for reproduction, it is none the less clear that the delay and ultimate failure to date in achieving consensus on the former has also increased the likelihood of the latter becoming a foreseeable reality in the absence of a legally binding global convention. Whilst the much heralded promise of therapies has now been severely undermined by scandals of fraud,2 the available evidence from various primate studies3–5 and the history of similar work with other mammalian species6,7 have provided little reason to doubt that human reproductive cloning might be possible in principle . I completely agree with Dr Biller-Andorno’s appeal that we need to “foster a genuine, worldwide discourse on bioethical issues” and not let our debate get completely derailed by vested interests, whether politically or economically motivated. If we don’t, we can probably expect dire consequences for the future of biomedical research and its impact on society at large.Prior to the United Nations’ discussions regarding a ban on human cloning in October 2004, the Human Fertilisation and Embryology Authority in Great Britain announced that they had granted their first licence to clone human embryos by nuclear transfer,8 though no other applications had apparently been made following the legalisation …. (shrink)

The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient’s relatives who, (...) without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be “activated” by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons. (shrink)

The Universal Declaration on Bioethics and Human Rights adopted by the United Nations Educational, Scientific, and Cultural Organisation on 19 October 2005 is an important step in the search for global minimum standards in biomedical research and clinical practice. As a member of UNESCO International Bioethics Committee, I participated in the drafting of this document. Drawing on this experience, the principal features of the Declaration are outlined, before responding to two general charges that have been levelled at UNESCO’s bioethical activities (...) and at this particular document, are outlined. One criticism is to the effect that UNESCO is exceeding its mandate by drafting such bioethical instruments—in particular, the charge is that it is trespassing on a topic that lies in the responsibility of the World Health Organization. The second criticism is that UNESCO’s reliance on international human rights norms is inappropriate. (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)

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)

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)

Rapid advancements in human neuroscience and neurotechnology open unprecedented possibilities for accessing, collecting, sharing and manipulating information from the human brain. Such applications raise important challenges to human rights principles that need to be addressed to prevent unintended consequences. This paper assesses the implications of emerging neurotechnology applications in the context of the human rights framework and suggests that existing human rights may not be sufficient to respond to these emerging issues. After analysing the relationship between neuroscience and human rights, (...) we identify four new rights that may become of great relevance in the coming decades: the right to cognitive liberty, the right to mental privacy, the right to mental integrity, and the right to psychological continuity. (shrink)

This volume gives an overview on the currently debated ethical issues regarding advance directives from an international perspective. It focuses on a wider understanding of the known and widely accepted concept of patient self-determination for future situations. Although advance directives have been widely discussed since the 1980s, the ethical bases of advance directives still remain a matter of heated debates. The book aims to contribute to these controversial debates by integrating fundamental ethical issues on advance directives with practical matters of (...) their implementation. Cultural, national and professional differences in how advance directives are understood by health care professions and by patients, as well as in laws and regulations, are pinpointed. (shrink)

A discussion with Roberto Andorno about global bioethics and biolaw, the Coronavirus pandemic, and its impact on human dignity and rights. Can we foresee the emerging new profile of global bioethics and biolaw in the post-Coronavirus era? How significant are they going to be in the future, after the enormous pressure that the Coronavirus pandemic has exercised on key political, legal, and ethical values? Must the voice of bioethicists -compared to the ‘hard’ scientific data- be louder in the future (...) concerning decisions about emergency social and medical measures? Is there a hope that public empowerment will support robust, global public engagement and meaningful deliberation? How much does Roberto Andorno’s view on human dignity reveal a supposed commitment to moral realism? The massive deaths of elderly people living in hospices of Sweden, Spain, and Italy, based on an implicit ‘fair innings’ view, has recently posed certain questions on the moral unacceptability of such practices. The same questions arise in the case of the legalization of euthanasia grounded on the implicit acceptance of the view that life is not worth living under certain circumstances. Is it possible that the human rights bodies worldwide will acquire executive power, and how could this become possible? How influential the ‘precautionary principle’ can become regarding clinical and research ethics in the future? How urgent is the importance of the introduction of bioethical education in the curricula of ‘hard’ empirical studies? Roberto Andorno discusses with us all these controversial and under heated public debate issues, giving sometimes provocative answers. (shrink)

The principle of respect for human dignity plays a crucial role in the emerging global norms relating to bioethics, in particular in the UNESCO Universal Declaration on Bioethics and Human Rights. This instrument, which is a legal, not merely an ethical document, can be regarded as an extension of international human rights law into the field of biomedicine. Although the Declaration does not explicitly define human dignity, it would be a mistake to see the emphasis put on this notion as (...) a mere rhetorical strategy. Rather, the appeal to dignity reflects a real concern about the need to promote respect both for the intrinsic worth of human beings and for the integrity of the human species. But dignity alone cannot solve most of the dilemmas posed by biomedical practice. This is why international biolaw combines, on the one hand, the appeal to human dignity as an overarching principle with, on the other hand, the recourse to human rights, which provide an effective and practical way forward for dealing with bioethical issues at a global level. (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)

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...

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)

This paper argues that some of the misunderstandings surrounding the meaning and function of the concept of human dignity in bioethics arise from a lack of distinction between two different roles that this notion plays: one as an overarching policy principle, and the other as a moral standard of patient care. While the former is a very general concept which fulfils a foundational and a guiding role of the normative framework governing biomedical issues, the latter reflects a much more concrete (...) and context-specific understanding of the patient as a “person”. The importance of dignity as a policy principle will be described by appealing to the distinction between principles and rules as developed by some legal philosophers. The value of dignity as a standard of patient care will be illustrated with the help of concrete examples and by drawing on the taxonomies of dignity proposed by Jonathan Mann and other scholars. The overall scope of the article is to highlight this double and complementary role of human dignity in bioethics. (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)

Das Buch enthält aktuelle Fallbesprechungen: Zukonkreten Fällen aus dem Feld der Bio- und Medizinethik wird eine kurze Analyse ethischer Aspekte dargestellt, an die sich juristische Kommentare anschließen. Diskutiert werden nicht-klinische Fälle aus Forschungsethik und Ethik in den Lebenswissenschaften sowie Fälle aus der klinischen Praxis in den Bereichen Chirurgie, Intensiv- und Notfallmedizin, genetisches Screening, Allgemeinmedizin, Neurologie, Psychiatrie und innere Medizin.

DieMedizinIntensivmedizin Intensivmedizin ist ein wichtiges Arbeitsfeld der biomedizinischen Ethik. In vielen Fällen werden existentielle Fragen des Menschseins berührt, um die Individuen und Gesellschaften immer wieder erneut ringen: Unter welchen Umständen erwarte oder erhoffe ich als Intensivpatient welche Art der Zuwendung? Welche Verpflichtung habe ich als Angehöriger dem Patienten gegenüber, wie kann ich meiner Rolle als Bezugsperson gerecht werden? Welche Verantwortung hat die Gemeinschaft bzw. der Staat gegenüber Schwerkranken und Sterbenden? Was ist ein guter Tod und wer darf darüber befinden? Namen (...) wie „Karen Quinlan“ oder „Nancy Cruzan“, zwei junge Frauen, die sich nach einem Unfall über Jahre hinweg in einem Zustand des apallischen Syndroms (‚Wachkoma‘) befanden, erinnern an die intensiven Debatten, die über die letzten Jahrzehnte zu diesen Fragen geführt wurden. Zudem ist die Intensivmedizin seit ihren Anfangstagen zur Zeit der Polioepidemien und der Entwicklung verschiedener Organersatztherapien (Dialyse, Beatmung) in der Mitte des letzten Jahrhunderts von Allokationsfragen begleitet: Welcher Patient soll die knappe Ressource erhalten und wer soll darüber anhand welcher Kriterien entscheiden dürfen? Die kritischen Diskussionen zum „God Committee“ von Seattle – einem Bürgerkomitee, das Anfang der 1960er Jahre über den Zugang von Patienten zur Dialyse befand – sowie um die Zuteilungskriterien für Organe Verstorbener zum Zwecke der Transplantation illustrieren, dass es sich hierbei im Kern nicht um medizinischtechnische, sondern um Gerechtigkeitsfragen sowie um Fragen der Abwägung individual- und sozialethischer Prinzipien handelt. (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)

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)