Immunisation is offered to all age groups in the UK, but is mainly given to infants and school-age children. Such immunisation is not compulsory, in contrast to other countries, such as the United States. Levels of immunisation are generally very high in the UK, but the rates of immunisation vary with the public perception of the risk of side effects. This article discusses whether compulsory vaccination is acceptable by considering individual cases where parents have failed to give consent or have (...) explicitly refused consent for their children to be immunised. In particular, the rights of: a parent to rear his/her child according to his/her own standards; the child to receive health care, and the community to be protected from vaccine-preventable infectious disease are considered. The conclusion of the article is that compulsory vaccination cannot, with very few exceptions, be justified in the UK, in view of the high levels of population immunity which currently exist. (shrink)

Rapid growth in structural and functional brain research has led to increasing ethical discussion of what to do about incidental findings within the brains of healthy neuroimaging research participants that have potential health importance, but which are beyond the original aims of the study. This dilemma has been widely debated with respect to general neuroimaging research but has attracted little attention in the context of neuromarketing studies. In this paper, I argue that neuromarketing researchers owe participants the same ethical obligations (...) as other neuroimaging researchers. The financial resources available to neuromarketing firms and the social value of neuromarketing studies should command greater attention to the elucidation and management of incidental findings. However, this needs to be balanced against finite resources available within most public health systems. (shrink)

This paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between the good and the right, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of the good. Enacting solidarity drives progress in research and clinical practice. At the same time, such acts of sharing could—especially considering current developments in big data and artificial intelligence—compromise the right by leading to injustices and (...) affecting concrete modes of individual self-determination. In order to address this potential tension, two key elements for ethical reflection on data-driven medicine are proposed: the controllability of information flows, including technical infrastructures that are conducive towards controllability, and a paradigm shift towards output-orientation in governance and policy. (shrink)

Medical Ethics has many unsung heros and heroines. Here we celebrate one of these and on telling part of her story hope to place modern medical ethics and bioethics in the UK more centrally within its historical and human contex.

Definition of the problem The reform of German guardianship law coming into force in 2023 will remove the term “well-being” from the law. This is intended to emphasise that the legal guardian should be guided by the subjective wishes of the person rather than by an objective understanding of well-being. This article analyses the understanding of well-being underlying the reformed guardianship law in comparison to common conceptions of well-being in philosophy and medical ethics, aiming to promote interdisciplinary understanding between ethics (...) and law. Arguments The justification for the reform emphasises that the law is based on a subjective understanding of well-being. However, this understanding does not correspond to philosophical subjective theories of well-being, according to which only things that a person desires can contribute to her well-being. In contrast, the guardianship law assumes that the fulfilment of certain wishes can lead to objective harm to the person and thus impair her well-being. Negative consequences for the objective well-being of a person are only relevant insofar as they indicate a limit to following current wishes that are based on a natural will and are not an expression of self-determination. Conclusion While the term “well-being” is removed from reformed guardianship law, the law implicitly contains an understanding of well-being comparable to a hybrid conception of well-being from a medical ethics perspective. According to this conception, fulfilment of a person’s wishes generally contributes to her well-being, although certain objective criteria are also taken into consideration. (shrink)

In the United States, disturbing concerns pertaining to both how putative bioethicists are perceived and the potential for the abuse of their power in connection with these perceptions compel close examination. This paper addresses these caveats by examining two fundamental and interrelated components in the image-construction of the ethicist: definitional and contextual. Definitional features reveal that perceptions and images of the ethicist are especially subject to distortion due to a lack of clarity as to the nature and qualifications of the (...) ethicist. Furthermore, the clinical, professional, political, academic, and linguistic contexts in which these ethicists are engaged are contexts of disquieting degrees of power. I argue that the lack of definitional clarity as to what constitutes an ethicist combined with the above volatile contexts together set the stage for the abuse of power on the part of ethicists. Throughout, I question the extent of self-critical analyses among ethicists, and, in view of these components in image-construction and their relationship to power, I challenge the degree of integrity within the field. In conclusion, I propose some areas for further investigation. (shrink)

Sowohl in der klinischen und rechtlichen Praxis als auch in der Medizinethik besteht Uneinigkeit darüber, was die (moralische) Verbindlichkeit von Patientenverfügungen begründet und wie mit ihnen in der Praxis zu verfahren ist. Dieser Artikel versucht, die ethisch-normative Basis von Patientenverfügungen näher zu beleuchten. Eine Bestimmung erfolgt in drei Schritten. Erstens wird analysiert, welche Autonomiekonzeption Patientenverfügungen zugrunde liegt. Patientenverfügungen, so meine These, sind Ausdruck eines relationalen, um den Aspekt der Persönlichkeit angereicherten Autonomiebegriffs. Eine moralische Verbindlichkeit ist mit dieser Analyse noch nicht (...) geklärt. Im Anschluss werden daher Argumente gesammelt, warum eine Patientenverfügung für Drittpersonen moralische Bindungskraft haben könnte. In der Achtung der Persönlichkeit sehe ich hier einen zentralen Punkt. Ob die Legitimität der in einer Patientenverfügung geäußerten Wünsche relativ zu einer bestehenden Rechtskultur, dem Allgemeinverständnis einer Gesellschaft oder der Kultur einer medizinischen Praxis ist, oder unabhängig vom soziokulturellen Kontext begründet werden kann, bleibt dabei eine offene Frage. (shrink)

Thirty-five current therapy clients, 47 former clients, and 42 college students with no therapy experience rated 27 items in terms of importance for inclusion in informed consent discussions. The current and former client samples rated information about inappropriate therapeutic techniques, confidentiality, and the risks of alternative treatments as most important, and information about the personal characteristics of the therapist and the therapist's degree as least important. The results of this study provide evidence for differential informed consent disclosure practices.

Neurosurgery is a topic that evokes many hopes and fears at the same time. One of these fears is concerned with the worry about losing one's identity. Taking this concern seriously, the article deals with the question: Can the concept of ‘personal identity’ be used successfully in normative considerations concerning neurosurgery? This question will be answered in three steps. First, a short introduction to the philosophical debate about personal identity is given. Second, a new theory of personal identity is presented. (...) This theory has two components. On the one hand, it explains the phenomenon of human existence through time. On the other hand, it demonstrates the normative concept of personal identity. The final step proves the explanatory power of the theory on the basis of a practical example, namely deep brain stimulation. It will be shown that personal identity alters quite easily, whereas human persistence is rather stable. The distinction between both concepts finally serves to develop a terminology that is able to structure normative debates very effectively. (shrink)

BackgroundPrecision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review.MethodsWe used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided 665 (...) different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine.ResultsMany patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health.ConclusionsNational legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine’s benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients’ decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment. (shrink)

This article describes a method of scoping for potential ethical contentions within a resource constrained research environment where actor participation and bottom–up analysis is precluded. Instead of reverting to a top–down analytical structure, a data-led process is devised. This imitates a bottom–up analytic structure in the absence of the direct participation of actors, culminating in the construction of a map of the ethical landscape; a high-resolution ethical matrix of coded interpretations of various actors’ ethical framings of the technology. Despite its (...) limitations, which are discussed, the map can subsequently support the identification of areas where ethical contentions may be raised. Here, the method is described with reference to the construction and analysis of a map of the ethical landscape of carbon capture and storage technology. Taken as a preliminary stage of a larger study, it can support the design and initiation of more sophisticated analyses which may integrate stronger bottom–up participation and facilitate a reflective, deliberative process amongst actors. (shrink)

No known cure exists for COVID-19, and medical practitioners are exhausted and at their wits’ end trying to find treatments that prevent patients from ending up in hospital or intensive care, or even dying. A variety of treatments tried by medical practitioners include standard registered medicine, investigational or so-called experimental, unapproved or preapproved medicines, emergency or compassionate-use authorised medicine and pre-market approved medicine. However, the medicines that can be accessed via each of these categories are at different stages of efficacy (...) testing and knowledge about adverse effects, dosages and risks. To obtain ethical and legal informed consent, medical practitioners must deal with a lot of medical uncertainty, and care must be taken to ensure that the patient understands the difference in risks they may be willing to take depending on the medicine’s stage of development. Often additional information is required to obtain ethical consent as opposed to legal consent. A purely legal approach to informed consent, especially when dealing with the medical uncertainties of health emergencies and pandemics, may lead to patients’ consent lacking in enough substance to be truly considered legal and ethical. Informed consent as respect for autonomy in this sense requires more than the patient’s explicit agreement or compliance with a certain treatment proposal. This article explains the difference in consent content attached to each different stage of a medicine’s development, especially considering the additional difficulties posed by obtaining truly informed consent during a pandemic with uncertain characteristics, treatment and solutions. (shrink)

Rule systems are used every day to share experience, pre-existing knowledge, beliefs and ethical rules, and to provide instructions for future action. This article expands and builds upon an approach pioneered by Julius M. Moravcsik to argue that ethics cannot be completely codified into a rigid set of rules, because any such set lacks a misapplication-correcting sensibility. Thus, an ethics that is transferred purely by means of a rule-set is incomplete and thus cannot be used reliably to guide future action. (...) The balancing sensibility is formed out of pre-existing expert knowledge and takes account of the limitations of rule-sets in specific contexts. Moravcsik’s approach is then expanded by incorporating it into a holistic framework for the analysis, guidance and development of actions to be taken to support the emergence, selection and implementation of solutions for a sustainable future. This approach has profound implications for managers and organisers in new or critical situations. (shrink)

Departing from theories of distributive justice and their relation with the distribution of health care within society, especially egalitarianism and libertarianism, this paper aims at demonstrating that the approach taken by the European Court of Justice regarding the application of the Internal Market principles (or the market freedoms) to the field of health care services has introduced new values which are more concerned with a libertarian view of health care. Moreover, the paper also addresses the question of how these new (...) values introduced by the Court may affect common principles of European health systems, such as equity and accessibility. (shrink)

This paper pertains to research works aiming at linking ethics and automated reasoning in autonomous machines. It focuses on a formal approach that is intended to be the basis of an artificial agent’s reasoning that could be considered by a human observer as an ethical reasoning. The approach includes some formal tools to describe a situation and models of ethical principles that are designed to automatically compute a judgement on possible decisions that can be made in a given situation and (...) explain why a given decision is ethically acceptable or not. It is illustrated on three ethical frameworks—utilitarian ethics, deontological ethics and the Doctrine of Double effect whose formal models are tested on ethical dilemmas so as to examine how they respond to those dilemmas and to highlight the issues at stake when a formal approach to ethical concepts is considered. The whole approach is instantiated on the drone dilemma, a thought experiment we have designed; this allows the discrepancies that exist between the judgements of the various ethical frameworks to be shown. The final discussion allows us to highlight the different sources of subjectivity of the approach, despite the fact that concepts are expressed in a more rigorous way than in natural language: indeed, the formal approach enables subjectivity to be identified and located more precisely. (shrink)

The traditional distinction between ordinary, i.e., obligatory means to preserve life and extraordinary, non-obligatory means is an especially useful tool for HECs in today's secular pluralist health care system, because it gives factors that can override the prima facie good of preserving the patient's life. I first indicate the need for such a tool. I then demonstrate the present misunderstanding of the distinction and give its proper understanding. Finally, I show the applicability of the distinction for HEC deliberations about three (...) important types of cases: the conscious, irreversibly but not terminally ill patient who requests cessation of curative treatment; the provision of artificial nutrition and hydration to permanently vegetative patients; and the allotment of intensive care and other scarce medical resources. (shrink)

BackgroundHealthcare is permeated by phenomena of vulnerability and their ethical significance. Nonetheless, application of this concept in healthcare ethics today is largely confined to clinical research. Approaches that further elaborate the concept in order to make it suitable for healthcare as a whole thus deserve renewed attention.MethodsConceptual analysis.ResultsTaking up the task to make the concept of vulnerability suitable for healthcare ethics as a whole involves two challenges. Firstly, starting from the concept as it used in research ethics, a more detailed (...) characterization and systematization of the different realms of human abilities and the various ways in which these realms contain vulnerability is to be established. Secondly, at the same time, the sought-after concept of vulnerability should avoid picturing the relation between healthcare recipient and provider as a relation between a dependent individual in need and another individual capable of providing all the help necessary. An adequate concept of vulnerability should enable one to understand when and in which respects care providers may be vulnerable as well. Philosophical accounts of vulnerability can help to meet both of these challenges.ConclusionsPhilosophical accounts of vulnerability can help to make the concept of vulnerability suitable for healthcare ethics as a whole. They come with a price, though. While the ethical role of vulnerability in medical ethics usually is to signify states of affairs that are to be diminished or overcome, philosophical accounts introduce forms of vulnerability that are regarded as valuable. Further analyzing and systematizing forms and degrees of vulnerability thus comprises the task to distinguish between amounts and types of vulnerability that can count as valuable, and amounts and types of vulnerability that are to be alleviated. (shrink)

Recent developments in biotechnology allow for the generation of increasingly complex products out of human tissues, for example, human stem cell lines, synthetic embryo-like structures and organoids. These developments are coupled with growing commercial interests. Although commercialisation can spark the scientific and clinical promises, profit-making out of human tissues is ethically contentious and known to raise public concern. The traditional bioethical frames of gift versus market are inapt to capture the resulting practical and ethical complexities. Therefore, we propose an alternative (...) approach to identify, evaluate and deal with the ethical challenges that are raised by the increasing commercialisation of the exchange of sophisticated human tissue products. We use organoid technology, a cutting-edge stem cell technology that enables the cultivation of ‘mini-organs’ in a dish, as an example. First, we examine the moral value of organoids and recognise them as hybrids that relate to persons and their bodies as well as to technologies and markets in ambiguous ways. Second, we show that commercialisation of organoids is legitimised by a detachment of the instrumental and commercial value of organoids from their associations with persons and their bodies. This detachment is enacted in steps of disentanglement, among which consent and commodification. Third, we contend that far-reaching disentanglement is ethically challenging: (1) Societal interests could be put under pressure, because the rationale for commercialising organoid technology, that is, to stimulate biomedical innovation for the good of society, may not be fulfilled; (2) The interests of donors are made subordinate to those of third parties and the relational moral value of organoids may be insufficiently recognised. Fourth, we propose a ‘consent for governance’ model that contributes to responsible innovation and clinical translation in this exciting field. (shrink)

Non-therapeutic genetic testing in childhood presents a “myriad of ethical questions”; questions which are discussed and resolved in professional policy and position statements. In this paper we consider an underdiscussed but strongly influential feature of policy-making, the role of selective case and exemplar in the production of general recommendations. Our analysis, in the tradition of rhetoric and argumentation, examines the predominate use of three particular disease exemplar to argue for or against particular genetic tests. We discuss the influence these choices (...) have on the type and strength of subsequent recommendations. We argue that there are lessons to be drawn about how genetic diseases are conceptualised and we caution against the geneticisation of medical policy making. (shrink)

Genetic information about one individual often has medical and reproductive implications for that individual’s relatives. There is a debate about whether policy on transmitting genetic information within the family should change to reflect this shared aspect of genetic information. Even if laws on medical confidentiality remain unchanged, there still remains the question of professional practice and whether, to what extent and by what means professionals should encourage disclosure within a family. The debate so far has tended to focus on who (...) has a right to genetic information, or has a right to decline genetic information, frequently drawing on the notion of individual autonomy. There are significant divergences within this debate, and difficulties with the use of autonomy in this context have been noted. This paper draws on theoretical considerations as well as on qualitative empirical data to show that shifting from talk of autonomy to talk of integrity will greatly enrich and illuminate the issues. It becomes possible to gain deeper insights into the ethical significance of the timing and the manner of such communication, the character of recipients of knowledge, and the nuanced nature of communication and different levels of understanding within a family. (shrink)

Volume 19, Issue 9, September 2019, Page 54-56.

This article discusses gift authorship, the practice where co-authorship is awarded to a person who has not contributed significantly to the study. From an ethical point of view, gift authorship raises concerns about desert, fairness, honesty and transparency, and its prevalence in research is rightly considered a serious ethical concern. We argue that even though misuse of authorship is always bad, there are instances where accepting requests of gift authorship may nevertheless be the right thing to do. More specifically, we (...) propose that researchers may find themselves in a situation much similar to the problem of dirty hands, which has been frequently discussed in political philosophy and applied ethics. The problem of dirty hands is relevant to what we call hostage authorship, where the researchers include undeserving authors unwillingly, and only because they find it unavoidable in order to accomplish a morally important research goal. (shrink)

It is now an ethical dictum that patients should be informed by physicians about their diagnosis, prognosis and treatment options. In this paper, I ask: ‘How informed are the ‘informers’ in clinical practice?’ Physicians have a duty to be ‘well-informed’: patient well-being depends not just in conveying adequate information to patients, it also depends on physicians keeping up-to-date about: popular misunderstandings of illnesses and treatments; and the importance of patient psychology in affecting prognosis. Taking the case of depression as an (...) entry point, this paper argues that medical researchers and physicians need to pay serious attention to the explanations given to patients regarding their diagnosis. Studies on lay understanding of depression show that there is a common belief that depression is wholly caused by a ‘chemical imbalance’ that can be restored by chemically restorative antidepresssants, a claim that has entered ‘folk wisdom’. However, these beliefs oversimplify and misrepresent the current scientific understanding of the causes of depression: first, there is consensus in the scientific community that the causes of depression include social as well as psychological triggers ; second, there is significant dissensus in the scientific community over exactly what lower level, biological or biochemical processes are involved in causing depression; third, there is no established consensus about how antidepressants work at a biochemical level; fourth, there is evidence that patients are negatively affected if they believe their depression is wholly explained by of ‘biochemical imbalance’. I argue that the medical community has a duty, to provide patients with adequate information and to be aware of the negative health impact of prevalent oversimplifications—whatever their origins. (shrink)

ZusammenfassungAktuelle Positionspapiere wie das der Sektion Ethik der Deutschen Interdisziplinären Vereinigung für Intensiv- und Notfallmedizin „Therapiezieländerung und Therapiebegrenzung in der Intensivmedizin“, die „Münchner Leitlinie zu Entscheidungen am Lebensende“ und die Erlanger „Empfehlungen zur Behandlungsbegrenzung auf Intensivstationen“ konzentrieren sich auf die Begründung und Erstellung praxistauglicher Entscheidungspfade. Dabei bleibt kaum Raum für die Darlegung der moraltheoretischen Grundlagen zur formalen Handlungsbewertung einer Indikationsstellung am Lebensende. Der Beitrag will anhand einer intensivmedizinischen Entscheidungssituation zeigen, dass im Falle einer Therapiezieländerung aus Indikationsgründen eine aristotelische Argumentation zentrale (...) Bedeutung erhält. Sie besteht in der begründeten Festlegung eines realistisch erreichbaren Ziels und des dahin führenden Therapiepfades. Klinische Ethikberatung, so das Resultat, kann demnach nicht nur die Bedeutung von inhaltlichen Prinzipien unterstreichen, sondern muss auch ihre Kenntnis der formalen Handlungsbewertung zur Geltung bringen. (shrink)

The doctor-patient relationship is built on an implicit covenant of trust, yet it was not until the post-World War Two era that respect for patient autonomy emerged as an article of mainstream medical ethics. Unlike their medical forebears, physicians today are expected to furnish patients with adequate information about diagnoses, prognoses and treatments. Against these dicta there has been ongoing debate over whether placebos pose a threat to patient autonomy. A key premise underlying medical ethics discussion is the notion that (...) the placebo effect necessitates patient deception. Indeed, the American Medical Association guidelines imply that placebo treatment necessary entails a form of deception. As a consequence of this assumption, the fulcrum of debate on the use of placebo treatment has hinged on whether that deception is ever justified. Recently performed experiments with open-label transparently prescribed placebos have begun to challenge the notion that deception is necessary in eliciting the placebo effect and such effects necessarily involve a binary distinction between autonomy and beneficence. In this article we focus on the content of disclosures in distinctive open-label, transparently disclosed placebo studies and inquire whether they might be said to invoke deception in clinical contexts, and if so, whether the deception is unethical. We find that open placebos may be said to involve equivocation over how placebos work. However, drawing on surveys of patient attitudes we suggest that this equivocation appears to be acceptable to patients. We conclude that open placebos fulfil current American Medical Association guidelines for placebo use, and propose future research directions for harnessing the placebo effect ethically. (shrink)

*The views expressed are the author's own and should not be construed as representing the policies and opinions of the American Medical Association.

To investigate whether Swedish physicians, contrary to Swedish health care policy, employ considerations of patient responsibility for illness when rationing expensive treatments.

Formålet med nærværende oversigtsartikel er at undersøge den stigende digitalisering og deling af personlige informationer i sundhedsvæsenet, samt hvilke etiske udfordringer denne udvikling har for den enkelte borger. Mere præcis vil vi rammesætte denne diskussion i en dansk kontekst eksemplificeret ved Det Fælles Medicinkort. Det Fælles Medicinkort er en obligatorisk database for danske borgere indeholdende informationer om patienters medicinske historie to år tilbage. Denne database kan tilgås af en bred vifte af sundhedsprofessionelle i Danmark.På trods af lovede sundhedsmæssige fordele, såsom (...) en højere grad af sikkerhed i forbindelse med medicinering, en øget effektivisering af sundhedsvæsenet og dermed besparelser på de offentlige budgetter, plæderer vi i artiklen for, at implementeringen af Det Fælles Medicinkort kompromitterer den enkeltes privathed. Den enkelte borger er ikke i tilstrækkelig grad informeret om brugen af Det Fælles Medicinkort. Ydermere finder vi ikke, at borgerens autonomi i forhold til indholdet af personlige oplysninger i Det Fælles Medicinkort er opretholdt på en tilfredsstillende måde.Artiklens primære perspektiv er deontologisk, men for at nuancere vores diskussion inddrages lejlighedsvist også utilitaristiske argumenter. Endvidere inddrages i artiklen Helen Nissenbaum, Tom L. Beauchamp og James F. Childress samt John Rawls. I artiklen vil tre konkrete problemstillinger blive diskuteret i relation til Det Fælles Medicinkort: Deler vi relevante og passende data? Er distributionen af disse data til en så bred vifte af sundhedsprofessionelle på sin plads? Og slutteligt: Er den enkelte borgers beslutningsdygtighed, og dermed mulighed for autonomi i forhold til personrelaterede informationer, tilstrækkelig.Nøgleord: digitalisering, privathed, Danmark, sundhedsvæsen, Det Fælles MedicinkortEnglish summary: The right to privacy in Danish healthcareThe scope of this paper is to assess the growing digitalization of personal information in healthcare and the ethical challenges this development poses to the citizen. Specifically the paper discusses the right to privacy in a Danish context, namely in relation to the use of The Shared Medical Record. The Shared Medical Record is a default digital health record consisting of every patient’s medical history for the previous two years, accessible to a broad range of health professionals in Denmark.In this paper we discuss three aspects of The Shared Medical Record, primarily from a normative point of view: 1) Are the personal data shared by The Shared Medical Record relevant and appropriate? 2) Is the distribution of this information to the current array of health professionals appropriate? And 3) Does The Shared Medical Record adequately support and account for the quorum and autonomy of the individual citizen with regards to personal information?We argue that, advantages such as heightened security, efficiency and convenience aside, the citizens’ right to privacy is to some extent compromised by the terms and use of this record. The citizen is not extensively informed on the use of the record, and does not hold a sufficient degree of autonomy over the content and distribution of their personal data. The primary ethical perspective of the paper is deontological, but in order to properly nuance our stance we have chosen to include traditionally utilitarian points of view throughout our discussions.In the paper we introduce Helen Nissenbaum’s notion of contextual integrity in order to thoroughly assess the service’s ethical implications for Danish citizens and their future privacy, as well as points from John Rawls, Tom L. Beauchamp and James F. Childress. (shrink)

Background Best interests is a ubiquitous principle in medical policy and practice, informing the treatment of both children and adults. Yet theory underlying the concept of best interests is unclear and rarely articulated. This paper examines bioethical literature for theoretical accounts of best interests to gain a better sense of the meanings and underlying philosophy that structure understandings. Methods A scoping review of was undertaken. Following a literature search, 57 sources were selected and analysed using the thematic method. Results Three (...) themes emerged. The first placed best interests within the structure of wider theory, noting relationships with consequentialism, deontology, prudential value theory, rights and political philosophy. The second mapped a typology of processes of decision-making, among which best interests was ambiguously positioned. It further indicated factors that informed best interests decision-making, primarily preferences, dignity and quality of life. The final theme considered best interests from a relational perspective. Conclusions Characterisation of best interests as strictly paternalist and consequentialist is questionable: while accounts often suggested a consequentialist basis for best interests, arguments appeared philosophically weak. Deontological accounts, found in law and Kantianism, and theories of political liberalism influenced accounts of best interests, with accounts often associating best interests with negative patient preferences (i.e. individual refusals). There was much more emphasis on negative interests than positive interests. Besides preference, factors like dignity and quality of life were held to inform best interests decisions, but generally were weakly defined. To the extent that preferences were unable to inform decision making, decisions were either made by proxy authority or by an intersubjective process of diffuse authority. Differing approaches reflect bifurcations in liberal philosophy between new liberalism and neo-liberalism. Although neither account of authority appears dominant, bias to negative interests suggests that bioethical debate tends to reflect the widespread ascendancy of neo-liberalism. This attitude was underscored by the way relational accounts converged on private familial authority. The visible connections to theory suggest that best interests is underpinned by socio-political trends that may set up frictions with practice. How practice negotiates these frictions remains a key question. (shrink)

Where a decision has been made to stop futile treatment of critically ill patients on an intensive care unit – what is termed withdrawal of treatment in the UK – yet no doctor is available to perform the actions of withdrawal, nurses may be called upon to perform key tasks. In this paper I present two moral justifications for this activity by offering answers to two major questions. One is to ask if it can be in patients' best interests for (...) nurses to be the key actors in withdrawal of life‐sustaining treatment. The other is to ask if there is any reason that the nursing profession should not undertake such tasks if this is so. Both these questions require the resolution of weighty moral and philosophical issues. Thus, while offering a serious attempt to provide moral justifications for nurses undertaking withdrawal, this paper also invites debate over both the aim of task division between nurses and doctors, and how we might decide what is in the best interests of patients. (shrink)

This paper addresses ethical concerns emanating from the practice of using patients for health care education. It shows how some of the ways that patients are used in educational strategies to bridge theory-practice gaps can cause harm to patients and patient-practitioner relationships, thus failing to meet acceptable standards of professional practice. This will continue unless there is increased awareness of the need for protection of human rights in teaching situations. Unnecessary exposure of patients, failing to obtain explicit consent, causing harm (...) to vulnerable or disadvantaged groups and inappropriate use of information, though normally regarded as unacceptable professional practices, may go unrecognised in meeting educational needs, widening rather than narrowing theory-practice gaps. (shrink)

To protect children in research, procedures that are not administered in the medical interests of a child must be restricted. The risk threshold for these procedures is generally measured according to the concept of minimal risk. Minimal risk is often defined according to the risks of “daily life.” But it is not clear whose daily life should serve as the baseline; that is, it is not clear to whom minimal risk should refer. Commentators in research ethics often argue that “minimal (...) risk” should refer to healthy children or the subjects of the research. I argue that neither of these interpretations is successful. I propose a new interpretation in which minimal risk refers to children who are not unduly burdened by their daily lives. I argue that children are not unduly burdened when they fare well, and I defend a substantive goods account of children’s welfare. (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...

. Recent philosophers of science have not only revived the classical argument from inductive risk but extended it. I argue that some of the purported extensions do not fit cleanly within the schema of the original argument, and I discuss the problem of overdiagnosis of disease due to expanded disease definitions in order to show that there are some risks in the research process that are important and that very clearly fall outside of the domain of inductive risk. Finally, I (...) introduce the notion of epistemic risk in order to characterize such risks. (shrink)

The global COVID-19 pandemic has brought the issue of rationing finite healthcare resources to the fore. There has been much academic debate, media attention, and conversation in the homes of everyday individuals about the allocation of medical resources, diagnostic testing kits, ventilators, and personal protective equipment. Yet decisions to prioritize treatment for some individuals over others occur implicitly and explicitly in everyday practices. The pandemic has propelled the socially taboo and unavoidably prickly issue of healthcare rationing into the public spotlight—and (...) as such, healthcare rationing demands ongoing public attention and transparent discussion. This article concludes that in the aftermath of COVID-19, policymakers should work towards normalizing rationing discussions by engaging in transparent and honest debate in the wider community and public domain. Further, injecting greater openness and objectivity into rationing decisions might go some way towards dismantling the societal taboo surrounding rationing in healthcare. (shrink)

Während es in der Praktischen Philosophie und Angewandten Ethik ausführliche Debatten und Konzepte etwa zu den Fragen gibt, wie mit Problemen globaler Armut und Ungerechtigkeit umzugehen ist, welche Rechte und Pflichten Nationalstaaten angesichts zunehmender Flüchtlings- und Migrationsströme haben und welche Umweltschäden wir zukünftigen Generationen zumuten dürfen, bleiben einige andere innerstaatliche und naheliegende moralische Fragestellungen oftmals auf der Strecke: Welche moralischen Ansprüche haben sozial ausgegrenzte, ökonomisch benachteiligte und in Notlagen lebende Personen, die zu unserer Gesellschaft dazugehören? Mit den Problemen in der (...) Lebensgestaltung von Personengruppen wie Drogenabhängigen, Obdachlosen, Menschen mit Behinderungen und Arbeitslosen beauftragt der Sozialstaat – oftmals über subsidiär übertragene Kompetenzen – soziale Einrichtungen und ihre Sozialarbeiterinnen und Sozialarbeiter. Mit Blick auf diese „Dreieckskonstellation“ stellen sich zwei grundlegende ethische Fragen: Welche moralisch relevanten Gesichtspunkte bestimmen das Verhältnis von Sozialstaaten und gesellschaftlich ausgeschlossenen und benachteiligten Bürgerinnen und Bürgern bzw. – weiter gefasst – Bewohnerinnen und Bewohnern? Welche moralisch relevanten Gesichtspunkte sollten die Interaktion von Sozialarbeiterinnen und Sozialarbeitern mit ihren Klientinnen und Klienten in Beratungs- und Hilfskontexten bestimmen? Diesen basalen Fragen einer Ethik der Sozialen Arbeit wird, so unsere zentrale These, bisher von Seiten der Praktischen Philosophie noch zu wenig Aufmerksamkeit entgegengebracht. Diesem Zustand soll der vorliegende Themenschwerpunkt der Zeitschrift für Praktische Philosophie entgegenwirken, indem die darin enthaltenen Beiträge besonders auf die zweite Frage reagieren. Diese befassen sich insbesondere mit theoretischen und methodologischen Fragen einer Ethik der Sozialen Arbeit, etwa der Arbeitsteilung zwischen empirischen und normativen Ansätzen, der Funktion eines Rawls’schen weiten Überlegungsgleichgewichts und der Rolle und angemessenen Verständnisweise des Prinzips des Respekts vor Autonomie in der Praxis der Sozialen Arbeit. Wir verstehen unseren Themenschwerpunkt zugleich als ein Plädoyer und einen Aufruf zu weiterer Auseinandersetzung auch von Philosophinnen und Philosophen mit Fragen der Ethik der Sozialen Arbeit. (shrink)

Documented ethical violations and empirical research have demonstrated that, despite professional standards and formal training in ethical principles, some psychotherapists engage in unethical behaviors that compromise the welfare of clients. It appears that competing values and interests that emerge in the therapeutic endeavor can interfere with therapists' considerations of ethical standards and their willingness to act ethically. Expanding current models of ethical decision making, this article offers a hermeneutic model that recognizes that in addition to moral reasoning, the context of (...) the therapeutic relationship and the therapist's subjective responses are fundamental considerations in the interpretation and application of ethical interventions. Implications for understanding and training of ethics in psychotherapy in this broader context are explored. (shrink)

For many years the prevailing paradigm for medical decision making for children has been the best interest standard. Recently, some authors have proposed that Mill’s “harm principle” should be used to mediate or to replace the best interest standard. This article critically examines the harm principle movement and identifies serious defects within the project of using Mill’s harm principle for medical decision making for children. While the harm principle proponents successfully highlight some difficulties in present-day use of the best interest (...) standard, the use of the harm principle suffers substantial normative and conceptual problems. A medical decision-making framework for children is suggested, grounded in the four principles. It draws on the best interest standard, incorporates concepts of harm, and provides two questions that can act as guide and limit in medical decision making for children. (shrink)