Advances in assisted reproductive technologies can give rise to several ethical challenges. One of these challenges occurs when the reproductive desires of two individuals become incompatible and conflict. To address such conflicts, it is important to unbundle different aspects of (non)parenthood and to recognize the corresponding reproductive rights. This article starts on the premise that the six reproductive rights—the right (not) to be a gestational, genetic, and social parent—are negative rights that do not entail a right to assistance. Since terminating (...) or continuing a pregnancy is a form of assistance, the right (not) to be a gestational parent should enjoy primacy in conflicts. However, while refusing assistance may hinder the reproductive project of another person, “prior assistance” does not entitle someone to violate a reproductive right. Therefore, our analysis provides reasons to argue that someone has a right to unilaterally use cryopreserved embryos or continue the development of an entity in an extracorporeal gestative environment (i.e., ectogestation). Although this could lead to a violation of the right not to be a genetic parent, it does not necessarily entail a violation of the right not to be a social parent. (shrink)

This article argues for a ban on the performance of medically unnecessary genital normalizing surgeries as part of assigning a binary sex/gender to infants with intersex conditions on the basis of autonomy, regardless of etiology. It does this via a dis/analogy with the classic case in bioethics of Jehovah Witness (JW) parents' inability to refuse life-saving blood transfusions for their minor children. Both cases address ethical medical practice in situations where parents are making irreversible medical decisions on the basis of (...) values strongly held, identity, and relationship-shaping values—such as religious beliefs or beliefs regarding the inherent value of binary sex/gender—amidst ethical pluralism. Furthermore, it takes seriously—as we must in the intersex case—that the restriction of parents' right to choose will likely result in serious harms to potentially large percentage of patients, their families, and their larger communities. I address the objection that parents' capacity to choose is restricted in the JW case on the basis of the harm principle or a duty to nonmaleficence, given that the result of parent choice would be death. I provide evidence that this is mistaken from how we treat epistemic uncertainty in the JW case and from cases in which clinicians are ethically obligated to restrict the autonomy of nonminor patients. I conclude that we restrict the parents' right to choose in the JW case—and should in the case of pediatric intersex surgery—to secure patient's future autonomy. (shrink)

In times of person-centered care, it is all the more important to support patients in making good decisions about their care. One way to offer such support to patients is by way of Patient Decision Aids (PDAs). Ranging from patient brochures to web-based tools, PDAs explicitly state the decisions patients face, inform them about their medical options, help them to clarify and discuss their values, and ultimately make a decision. However, lingering discussions surround effectiveness research on PDAs. In this article, (...) I focus on two subjective measures of decision quality that are widely used as outcome measures in effectiveness research on PDAs (i.e., the Decisional Conflict Scale (DCS) and measures of regret). Although these measurement instruments have attracted critical attention in the scientific literature, bioethicists have hardly engaged with them. Therefore, I set myself to analyze the relationship between (the different subscales of) the DCS and measures of regret, on the one hand, and ethical principles such as beneficence and autonomy, on the other hand. In light of that analysis, I will clarify some discussions regarding the use of these measures of decision quality in effectiveness research on PDAs. This should help us to align the way we evaluate PDAs with ethical principles and avoid that our attempts to support patients in making good decisions about their care that is so central to person-centered care point in unethical directions. (shrink)

After a wave of breakthroughs in image‐based medical diagnostics and risk prediction models, machine learning (ML) has turned into a normal science. However, prominent researchers are claiming that another paradigm shift in medical ML is imminent—due to most recent staggering successes of large language models—from single‐purpose applications toward generalist models, driven by natural language. This article investigates the implications of this paradigm shift for the ethical debate. Focusing on issues like trust, transparency, threats of patient autonomy, responsibility issues in the (...) collaboration of clinicians and ML models, fairness, and privacy, it will be argued that the main problems will be continuous with the current debate. However, due to functioning of large language models, the complexity of all these problems increases. In addition, the article discusses some profound challenges for the clinical evaluation of large language models and threats to the reproducibility and replicability of studies about large language models in medicine due to corporate interests. (shrink)

Antimicrobial resistance (AMR) is an urgent, global threat to public health. The development and implementation of effective measures to address AMR is vitally important but presents important ethical questions. This is a policy area requiring further sustained attention to ensure that policies proposed in National Action Plans on AMR are ethically acceptable and preferable to alternatives that might be fairer or more effective, for instance. By ethically analysing case studies of coercive actions to address AMR across countries, we can better (...) inform policy in a context-specific manner. In this article, I consider an example of coercive antimicrobial stewardship policy in Canada, namely restrictions on livestock farmers' access to certain antibiotics for animal use without a vet's prescription. I introduce and analyse two ethical arguments that might plausibly justify coercive action in this case: the harm principle and a duty of collective easy rescue. In addition, I consider the factors that might generally limit the application of those ethical concepts, such as challenges in establishing causation or evidencing the scale of the harm to be averted. I also consider specifics of the Canadian context in contrast to the UK and Botswana as example settings, to demonstrate how context-specific factors might mean a coercive policy that is ethically justified in one country is not so in another. (shrink)

Recent advances in human brain organoid systems have raised serious worries about the possibility that these in vitro ‘mini‐brains’ could develop sentience, and thus, moral status. This article considers the relative moral status of sentient human brain organoids and research animals, examining whether we have moral reasons to prefer using one over the other. It argues that, contrary to common intuitions, the wellbeing of sentient human brain organoids should not be granted greater moral consideration than the wellbeing of nonhuman research (...) animals. It does so not by denying that typical humans have higher moral status than animals, but instead by arguing that none of the leading justifications for granting humans higher moral status than nonhuman animals apply to brain organoids. Additionally, it argues that there are no good reasons to be more concerned about the well‐being of human brain organoids compared to those generated from other species. (shrink)

Some authors argue that it is permissible for clinicians to conscientiously provide abortion services because clinicians are already allowed to conscientiously refuse to provide certain services. Call this the symmetry thesis. We argue that on either of the two main understandings of the aim of the medical profession—what we will call “pathocentric” and “interest‐centric” views—conscientious refusal and conscientious provision are mutually exclusive. On pathocentric views, refusing to provide a service that takes away from a patient's health is professionally justified because (...) there are compelling reasons, based on professional standards, to refuse to provide that service (e.g., it does not heal, and it is contrary to the goals of medicine). However, providing that same service is not professionally justified when providing that service would be contrary to the goals of medicine. Likewise, the thesis turns out false on interest‐centric views. Refusing to provide a service is not professionally justified when that service helps the patient fulfill her autonomous preferences because there are compelling reasons, based on professional standards, to provide that service (e.g., it helps her achieve her autonomous preferences, and it would be contrary to the goals of medicine to deny her that service). However, refusing to provide that same service is not professionally justified when refusing to provide that service would be contrary to the goals of medicine. As a result, on either of the two most plausible views on the goals of medicine, the symmetry thesis turns out false. (shrink)

The classification of ageing as a disease is fundamental to developing new pharmacological strategies that can target said phenomenon. The European Medicines Agency does not do this and maintains a questionable perspective based on the traditional naturalistic argument and the value-free ideal. An alternative is proposed which, inspired by consequentialism, is committed to considering ageing as a disease in European regulatory contexts as long as the ethical consequences are desirable. Within a realistic framework, I show that making this decision would (...) have moderate positive effects such as increased knowledge about antiageing pharmacology or potential greater chances of completing vital projects. Furthermore, we will see that the main arguments used by critics to show that the negative effects outweigh the positive ones are not sound. Therefore, I conclude that it would be beneficial for the European Medicines Agency to change its position on ageing. (shrink)

The research we fund today will improve the health of people who will live tomorrow. But future people will not all benefit equally: decisions we make about what research to prioritize will predictably affect when and how much different people benefit from research. Organizations that fund health research should thus fairly account for the health needs of future populations when setting priorities. To this end, some research funders aim to allocate research resources in accordance with disease burden, prioritizing illnesses that (...) cause more morbidity and mortality. In this article, I defend research funders' practice of aligning research funding with disease burden but argue that funders should aim to align research funding with future—rather than present—disease burden. I suggest that research funders should allocate research funding in proportion to aggregated estimates of disease burden over the period when research could plausibly start to yield benefits until indefinitely into the future. (shrink)

In a challenge trial, research subjects are purposefully exposed to some pathogen in a controlled setting, in order to test the efficacy of a vaccine or other experimental treatment. This is an example of medical effective altruism (MEA), where individuals volunteer to risk harms for the public good. Many bioethicists rejected challenge trials in the context of Covid‐19 vaccine research on ethical grounds. After considering various grounds of this objection, I conclude that the crucial question is how much harm research (...) subjects can permissibly risk. But we lack a satisfying way of making this judgment that does not appeal simply to the intuitions of doctors or bioethicists. I consider one recent and structurally plausible approach to critically evaluating the harm question. Alex London defends a social consistency test for research risks: we should compare the risks undertaken by research subjects to relevantly similar risks which are accepted in other spheres of society. I argue there is no good reason not to consider volunteer military service as a relevant social comparison. This implies there is essentially no cap on acceptable risks on the social consistency rationale. In short, if soldiers can be heroes, why can't research volunteers? (shrink)

Parthenogenesis is a form of asexual reproduction in which a gamete (ovum or sperm) develops without being fertilized. Tomer Jordi Chaffer uses parthenogenesis to challenge Don Marquis' future-like-ours (FLO) argument against abortion. According to Marquis, (1) what makes it morally wrong to kill us is that it would deprive us of a possible future that we might come to value—a future “like ours” (FLO) and (2) human fetuses are numerically identical to any adult human organism they may develop into, and (...) thus have a FLO. Chaffer contends that if human ova are capable of parthenogenesis, then they would have a FLO, which contraception may deprive them of, but contends this is absurd. Bruce P. Blackshaw challenges Chaffer, contending sexually fertilized embryos are not identical to unfertilized ovum, but this would yield a more absurd implication, that fertilization deprives an ovum of a FLO! Here I show Marquis' account of identity rules out both Chaffer's and Blackshaw's accounts. (shrink)

Machine‐learning algorithms have the potential to revolutionise diagnostic and prognostic tasks in health care, yet algorithmic performance levels can be materially worse for subgroups that have been underrepresented in algorithmic training data. Given this epistemic deficit, the inclusion of underrepresented groups in algorithmic processes can result in harm. Yet delaying the deployment of algorithmic systems until more equitable results can be achieved would avoidably and foreseeably lead to a significant number of unnecessary deaths in well‐represented populations. Faced with this dilemma (...) between equity and utility, we draw on two case studies involving breast cancer and melanoma to argue for the selective deployment of diagnostic and prognostic tools for some well‐represented groups, even if this results in the temporary exclusion of underrepresented patients from algorithmic approaches. We argue that this approach is justifiable when the inclusion of underrepresented patients would cause them to be harmed. While the context of historic injustice poses a considerable challenge for the ethical acceptability of selective algorithmic deployment strategies, we argue that, at least for the case studies addressed in this article, the issue of historic injustice is better addressed through nonalgorithmic measures, including being transparent with patients about the nature of the current epistemic deficits, providing additional services to algorithmically excluded populations, and through urgent commitments to gather additional algorithmic training data from excluded populations, paving the way for universal algorithmic deployment that is accurate for all patient groups. These commitments should be supported by regulation and, where necessary, government funding to ensure that any delays for excluded groups are kept to the minimum. We offer an ethical algorithm for algorithms—showing when to ethically delay, expedite, or selectively deploy algorithmic systems in healthcare settings. (shrink)

The central thesis of this article is that by anchoring bioethics' core conceptual armamentarium in a four-principled theory emphasizing autonomy and treating justice as a principle of allocation, theorists inadvertently biased 20th-century bioethical scholarship against addressing such subjects as ableism, anti-Black racism, classism, and other forms of discrimination, placing them outside of the scope of bioethics research and scholarship. It is also claimed that these scope limitations can be traced to the displacement of the nascent concept of respect for persons—a (...) concept designed to address classist and racist discrimination—with the morally solipsistic concept of autonomy. (shrink)

Preclinical xenotransplantation research using genetically engineered pigs has begun to show some promising results and could one day offer a scalable means of addressing organ shortage. While it is a fundamental tenet of ethical human subject research that participants have a right to withdraw from research once enrolled, several scholars have argued that the right to withdraw from xenotransplant research should be suspended because of the public health risks posed by xenozoonotic transmission. Here, we present a comprehensive critical evaluation of (...) the claim that xenotransplant recipients should be required to waive their right to withdraw from lifelong biosurveillance. We conclude that if xenotransplantation requires participants to waive their right to withdraw, then clinical trials may not be justifiable, given the ethical and legal obstacles involved with doing so. Consequently, if clinical trials are permitted with a right to withdraw, then they may pose a significant public health risk. (shrink)

In biomedical ethics, there is widespread acceptance of moral realism, the view that moral claims express a proposition and that at least some of these propositions are true. Biomedical ethics is also in the business of attributing moral obligations, such as “S should do X.” The problem, as we argue, is that against the background of moral realism, most of these attributions are erroneous or inaccurate. The typical obligation attribution issued by a biomedical ethicist fails to truly capture the person's (...) actual obligations. We offer a novel argument for rife error in obligation attribution. The argument starts with the idea of an epistemic burden. Epistemic burdens are all of those epistemic obstacles one must surmount in order to achieve some aim. Epistemic burdens shape decision-making such that given two otherwise equal options, a person will choose the option that has the lesser of epistemic burdens. Epistemic burdens determine one's potential obligations and, conversely, their non-obligations. The problem for biomedical ethics is that ethicists have little to no access to others' epistemic burdens. Given this lack of access and the fact that epistemic burdens determine potential obligations, biomedical ethicists often can only attribute accurate obligations out of luck. This suggests that the practice of attributing obligations in biomedical ethics is rife with error. To resolve this widespread error, we argue that this practice should be abolished from the discourse of biomedical ethics. (shrink)

The World Medical Association has announced that a new revision process of the Declaration of Helsinki has been started. This article will identify the criticisms that have been made in the bioethics literature, particularly since the last revision. In addition, criticisms are discussed that were made in the literature even before the last revision and have not fallen silent. The plausibility of the recommendation for a change in the Declaration of Helsinki is examined.

This paper argues that a lonely death is, by definition, a bad death and that society as a whole, as well as individuals in society are obligated to assure a certain degree of well‐being, flourishing, or care among and for fellow individuals. Individuals can then be said to have a right against dying a lonely death. Such a right has corresponding duties. The paper further specifies what such duties may entail based on what individuals may need on their deathbed, specifically (...) focusing on the need for human touch. Assuming that human touch might indeed be needed by some individuals in order to avoid a lonely death, the paper explores potential implications from a public health perspective, particularly during infectious disease outbreaks such as COVID. (shrink)

In this article, I argue that various epistemic challenges associated with eating disorders (EDs) can negatively affect the care of already marginalized patient groups with various EDs. I will first outline deficiencies in our understanding of EDs—in research, healthcare settings, and beyond. I will then illustrate with examples cases where discriminatory misconceptions about what EDs are, the presentation and treatment of EDs, and who gets EDs, instantiate obstacles for the treatment of various ED patient groups.

Herjeet Kaur Marway recently proposed the Principle of Procreative Justice, which says that reproducers have a strong moral obligation to avoid completing race and colour injustices through their selection choices. In this article, we analyze this principle and argue, appealing to a series of counterexamples, that some of the implications of Marway's Principle of Procreative Justice are difficult to accept. This casts doubt on whether the principle should be adopted. Also, we show that there are some more principled worries regarding (...) Marway's idea of a strong pro tanto duty not to complete injustices through one's procreative choices. Nonetheless, we believe Marway's arguments point in the right general direction regarding duties and structural injustice. Thus, in the final part, we suggest a positive proposal on how it would be possible to respond to the cases we raise. More specifically, we explore the suggestion that agents have a pro tanto duty to participate in eliminating structural injustice. Importantly, this duty can be satisfied, not only in procreation choices but in multiple ways. (shrink)

Consensual homicide remains a crime in jurisdictions where active voluntary euthanasia has been legalized. At the same time, both jurisdictions, in which euthanasia is legal and those in which it is not, recognize that all patients (whether severely ill or not) have the right to refuse or withdraw medical treatment (including life-saving treatment). In this paper, I focus on the tensions between these three norms (the permission of active euthanasia, the permission to reject life-saving treatment, and the prohibition of consensual (...) homicide), assuming a justification of euthanasia based on the right to (personal) autonomy. I argue that the best way to provide a coherent account of these norms is to claim that patients have two distinct rights: the right to autonomy and the right to bodily integrity. This solution has some relevant implications for the discussion of the legalization of active euthanasia. (shrink)

Exposome research is put forward as a major tool for solving the nature-versus-nurture debate because the exposome is said to represent “the nature of nurture.” Against this influential idea, we argue that the adoption of the nature-versus-nurture debate into the exposome research program is a mistake that needs to be undone to allow for a proper bioethical assessment of exposome research. We first argue that this adoption is originally based on an equivocation between the traditional nature-versus-nurture debate and a debate (...) about disease prediction/etiology. Second, due to this mistake, exposome research is pushed to adopt a limited conception of agential control that is harmful to one's thinking about the good that exposome research can do for human health and wellbeing. To fully excise the nature-versus-nurture debate from exposome research, we argue that exposome researchers and bioethicists need to think about the exposome afresh from the perspective of actionability. We define the concept of actionability and related concepts and show how these can be used to analyze the ethical aspects of the exposome. In particular, we focus on refuting the popular “gun analogy” in exposome research, returning results to study participants and risk-taking in the context of a well-lived life. (shrink)

Cryonics is the practice of cryopreserving the bodies or brains of legally dead individuals with the hope that these individuals will be reanimated in the future. A standard argument for cryonics says that cryonics is prudentially justified despite uncertainty about its success because at worst it will leave you no worse off than you otherwise would have been had you not chosen cryonics, and at best it will leave you much better off than you otherwise would have been. Thus, it (...) is a good, no-risk bet; in game-theoretic terms, cryonics is a weakly dominant strategy relative to refraining from utilizing cryonics. I object to this argument for two reasons. First, I argue that there is a practically relevant chance that cryonics will put you into an inescapable and very bad situation. Hence, cryonics is neither a no-risk bet nor a weakly dominant strategy. Second, I argue that the experience of being reanimated and living in the distant future would likely be transformative, and this likelihood undermines your justification for thinking that reanimation would be beneficial to you. I conclude that the standard argument does not show that cryonics is prudentially justified. (shrink)

Divergences and controversies are inevitable in the discussion of freedoms and rights, especially in the matter of reproduction. The Chinese first social egg freezing lawsuit raises the question: is the freedom to freeze eggs for social reasons justified because it is an instance of reproductive rights? This paper accepts social egg freezing as desirable reproductive freedom, but following Harel's approach and considering two theories of rights, the choice and interest theories of rights, we argue that social egg freezing is not (...) a reproductive right because one cannot justify a right or an instance of rights via merely describing the function of those instances that have been justified as right, that is, the choice theory lacks justifying normativity. Since reserving fertility and a suspension from reproduction do not serve reproductive ends per se, the sufficient reason for demanding social egg freezing as a right should be found in other ends rather than in right‐to‐reproduce, that is, the interest theory denies the demand as a right‐to‐reproduce. Permitting it on any grounds without guaranteeing adequate and accessible resources, especially in light of cross‐border reproductive care, raises serious questions about reproductive equality and violates the idea of reproductive rights. Therefore, any ground for social egg freezing should be weighed against whether more pressing reproductive needs, specifically those that are justified as rights, have been met. It would be social progress to shoulder these burdens for the vulnerable and then allow social egg freezing—if right‐to‐reproduce were not the only privilege of the few. (shrink)

This analysis investigates whether solidarity is an appropriate concept for thinking about justifications for a just distribution of bioethical goods in the international arena. This will be explored by looking at the national origins of the idea of justifying solidarity in the form of the health care that welfare states offer. Following that, ‘life’ and ‘health’ will be placed within a philosophical context by focusing on the main arguments of John Rawls and Amartya Sen and the role of solidarity in (...) these two theories of justice will be analysed. It will be shown that these theories assume that solidarity is not a prerequisite for just international structures. Finally, the possibility will be discussed, that there is a degree of uncertainty surrounding justifications for fair distribution in the international context that can result when the concepts of solidarity and justice are handled imprecisely. (shrink)

Translational ethics (TE) has been developed into a specific approach, which revolves around the argument that strategies for bridging the theory‐practice gap in bioethics must themselves be justified on ethical terms. This version of TE incorporates normative, empirical and foundational ethics research and continues to develop through application and in the face of new ethical challenges. Here, I explore the idea that the academic field of bioethics has not yet sufficiently analysed its own philosophical foundation for how it can, and (...) should, be practically relevant; neither has it comprehensively discussed the limitations on what impacts bioethicists should pursue. As a result, there has not been adequate training on how to suitably and appropriately impact real‐world practices. Moreover, bioethical perspectives are often competing with other strong interests, for example, economic and political, which may weaken their impact on policy‐making. The TE approach I propose can not only facilitate practical impacts of academic bioethics by being better informed by real‐world ethical issues but it also supports targeted and ethical justifications of the actual impact of academic work in real‐world contexts. In this paper, I clarify the premises for this TE approach, identify further challenges and sketch out potential solutions for the implementation of this methodological framework. (shrink)

In recent years, the case has been made for special attention to be paid to a branch of research in the field of bioethics called ‘translational bioethics’. In this paper, we start by considering some of the assumptions that those advancing translational approaches to bioethics make about bioethics and compare them to the reality of bioethics as an academic field. We move on to explain how those who make this case, implicitly or explicitly, for translational bioethics go awry because of (...) how they understand the ‘gap’ between bioethical inquiry and practical settings that requires bridging. We consider three interpretations of this ‘translation gap’ in bioethics: (i) the gap between theory and practice, (ii) the gap between the force of normative claims and practical contextual realities and (iii) the gap between relevance or applicability to practice and actual application or implementation in practice. In each case, we show how a proper understanding of the nature of the academic field of bioethics undermines how these gaps have been formulated, and how any need for talk of ‘translational bioethics’ is removed. (shrink)

This paper will take as its starting point the premise that developing translational bioethics is a worthwhile endeavour. I will develop an account of translational bioethics and discuss what implications this would have for the wider discipline of bioethics and argue that this would be a useful development for bioethics. The paper will conduct a form of ‘translational meta‐bioethics analysis’, in the words of Bærøe. I will argue that if we are serious about instituting translational bioethics, then it will need (...) to look and be organised in a very different way from current bioethics research, this will be a radically different form of bioethics from what we currently have. In this paper I will sketch what translational bioethics might look like. My proposal here is not that translational bioethics should supplant existing ways of doing bioethics, but rather that it should be an addition to it, another subdiscipline of bioethics. (shrink)

During the COVID‐19 pandemic, national triage guidelines were developed to address the anticipated shortage of life‐saving resources, should ICU capacities be overloaded. Rationing and triage imply that in addition to individual patient interests, interests of population health have to be integrated. The transfer of theoretical and empirical knowledge into feasible and useful practice models and their implementation in clinical settings need to be improved. This paper analyzes how triage protocols could translate abstract theories of distributive justice into concrete material and (...) procedural criteria for rationing intensive care resources during a pandemic. We reconstruct the development and implementation of a rationing protocol at a German university hospital: describing the ethical challenge of triage, clarifying the aspirational norms, and summarizing specific norms of fair triage and allocation for developing an institutional policy and practice model and implementing it. We reflect on how critical topics are seen by clinicians and what helped manage the perceived burdens of the triage dilemma. We analyze what can be learned from this debate regarding the difficult issues around triage protocols and their potential implementation into clinical settings. Analyzing the ought‐to‐is gap of triage, integrating abstract ethical principles into practical concepts, and evaluating those should clarify the benefits and risks of different allocation options. We seek to inform debates on triage concepts and policies to ensure the best possible treatment and fair allocation of resources as well as to help protect patients and professionals in worst‐case scenarios. (shrink)

The concept of “translational bioethics” has received considerable attention in recent years. Most publications draw an analogy to translational medicine and describe bioethical research that aims at implementing and evaluating ethical interventions. However, current accounts of translational bioethics are often rather vague and seem to differ with regard to conceptual and methodological assumptions. It is not clear and scarcely analyzed what exactly “translation” in the field of bioethics means, in particular regarding goals and processes so that it is justified to (...) appeal to translational medicine. In this article, we thus explore possible analogies and disanalogies between translational medicine and translational bioethics to establish whether the often occurring reference to concepts of translational medicine in the field of bioethics can be justified by substantial analogies. We will first provide an account of different models of translational medicine. In a second step, we will propose an analytic definition that explicitly articulates the essential characteristics of “translational research” irrespective of the research field (i.e., biomedicine, bioethics). Subsequently, we will explore whether and in how far general characteristics and phases of translational research in medicine can be applied to translational research in bioethics. Based on our analyses, we will come to the skeptical conclusion that at present there are considerable conceptual disanalogies and unsolved conceptual problems that disallow using “translational bioethics” in a meaningful analogy to respective accounts in biomedicine. Nevertheless, we will demonstrate that some insights gained by the conceptual accounts of translational medicine can contribute to advance current research activities in bioethics. (shrink)

This article discusses an approach to translational bioethics (TB) that is concerned with the adaptation—or ‘translation’—of concepts, theories and methods from bioethics to practical contexts, in order to support ‘non-bioethicists’, such as researchers and healthcare practitioners, in dealing with their ethical issues themselves. Specifically, it goes into the participatory development of clinical ethics support (CES) instruments that respond to the needs and wishes of healthcare practitioners and that are tailored to the specific care contexts in which they are to be (...) used. The theoretical underpinnings of this participatory approach to TB are found in hermeneutic ethics and pragmatism. As an example, the development of CURA, a low-threshold CES instrument for healthcare professionals in palliative care, is discussed. From this example, it becomes clear that TB is a two-way street. Practice may be improved by means of CES that is effectively tailored to specific end users and care contexts. The other way around, ethical theory may be enriched by means of the insights gained from engaging with practice in developing CES in a process of co-creation. TB is also a two-way street in the sense that it requires collaboration and commitment of both bioethicists and practitioners, who engage in a process of mutual learning. However, substantial challenges remain. For instance, is there a limit to the extent to which a method of moral reasoning can be adapted in order to meet the constraints of a given healthcare setting? Who is to decide, the bioethicist or the practitioners? (shrink)

The shift towards "empirical bioethics" was largely triggered by a recognition that stakeholders' views and experiences are vital in ethical analysis where one hopes to produce practicable recommendations. Such perspectives can provide a rich resource in bioethics scholarship, perhaps challenging the researcher's perspective. However, overreliance on a picture painted by a group of research participants—or on pre‐existing literature in that field—can lead to a biased view of a given context, as the subjectivity of data generated in these ways cannot (and (...) should not wholly) be escaped. In response, we propose the implementation of a complementary approach of ethno‐immersion in bioethics research. By positioning oneself in the context being researched, the researcher can better understand the realities of that context. The researcher's understanding will, naturally, be subjective too. However, it will act as a better developed and more informed outsider view, when considering the picture painted by participants and previous studies, thus enabling the researcher to introduce more nuance when analysing data. We introduce this approach after examining what we call the context detachment problem, whereby some bioethics scholarship—empirical or otherwise—fails to reflect the reality of the healthcare setting it concerns. Our proposed ethno‐immersion (which differs from formal ethnography) is then explored as a response, highlighting its benefits, and answering the question of timing within a research project. Finally, we reflect on the applicability of our proposal to non‐empirical bioethics scholarship, concluding that it remains important but may require some adjustments. (shrink)

The pandemic significantly raised the stakes for the translation of bioethics insights into policy. The novelty, range and sheer quantity of the ethical problems that needed to be addressed urgently within public policy were unprecedented and required high‐bandwidth two‐way transfer of insights between academic bioethics and policy. Countries such as the United Kingdom, which do not have a National Ethics Committee, faced particular challenges in how to facilitate this. This paper takes as a case study the brief career of the (...) Ethics Advisory Board (EAB) for the NHS Covid‐19 App, which shows both the difficulty and the political complexity of policy‐relevant bioethics in a pandemic and how this was exacerbated by the transience and informality of the structures through which ethics advice was delivered. It analyses how and why, after EAB's demise, the Westminster government increasingly sought to either take its ethics advice in private or to evade ethical scrutiny of its policies altogether. In reflecting on EAB, and these later ethics advice contexts, the article provides a novel framework for analysing ethics advice within democracies, defining four idealised stances: the pure ethicist, the advocate, the ethics arbiter and the critical friend. (shrink)

We suggest that in the particular context of medical education, ethics can be considered in a similar way to other kinds of knowledge that are categorised and shaped by academics in the context of wider society. Moreover, the study of medical ethics education is translational in a manner loosely analogous to the study of medical education as adjunct to translational medicine. Some have suggested there is merit in the idea that much as translational research attempts to connect the laboratory scientist's (...) work to its implications for patient care, translational ethics focuses on bringing ethics scholarship into the sphere of personal and public action. We distinguish the term ‘translational ethics’ (the study of ethics being translated between academy, classroom and clinic) from other prominent definitions in the bioethics literature. To do this, we build off a notion of knowledge translation that focuses on the nonlinear movement of information that comes to professionals through multiple competing sources. We suggest that this knowledge, and particularly knowledge about ethics, becomes embodied by the individual. It is through a reflective practice that internally embedded ethics knowledge might be modified, and this work might be best carried out with a moral community that maintains a sense of practical wisdom. Applying this translational approach to the study of medical ethics education can be both academically relevant and practically useful. This view of translation can help bridge the evident, multidirectional relationships between research, education and performance. It might also create further opportunities to develop medical ethics education theory. (shrink)

Across Europe, countries are reducing CO2 emissions and energy demand by lowering the temperature in public office buildings. These measures affect men and women unequally because the latter prefer and, indeed, perform better under higher temperatures than the standard temperature. Lowering the temperature thus further increases an already existing inequality. We show that the philosophical literature on discrimination provides an interesting theoretical approach to understanding such measures. On prominent understandings of what discrimination is, the policy would be considered direct discrimination (...) against women if it could be shown to reflect a broader inattentiveness to the needs of women in society. Alternatively, and more straightforwardly, the policies can be considered indirect discrimination because of their disparate effects on men and women. The final part of the paper shows that the policies are also wrong for the reasons it is often argued that discrimination is wrong—to wit, that it harms or disrespects those who are discriminated against. The final section suggests a range of measures to offset the discriminatory aspects of the policy. (shrink)

This paper provides a general framework for conceptualizing triage for intensive care unit admissions in public health emergencies such as the COVID‐19 pandemic. It applies this framework to some of the guidelines issued during the pandemic and addresses some controversial issues, including the role of age, the use of lives or life years, and the relevance of quality of life considerations. The paper defends a view on which triage protocols for public health emergencies should aim to maximize the number of (...) life years saved, may take into account age as a proxy, and should ignore quality of life considerations. (shrink)

Clinical trials play a crucial role in generating evidence about healthcare interventions and improving outcomes for current and future patients. For individual trial participants, however, there are inevitably trade‐offs involved in clinical trial participation, given that trials have traditionally been designed to benefit future patient populations rather than to offer personalised care. Failure to understand the distinction between research and clinical care and the likelihood of benefit from participation in clinical trials has been termed the ‘therapeutic misconception’. The evolution of (...) the clinical trials landscape, including greater integration of clinical trials into healthcare and development of novel trial methodologies, may reinforce the significance of the therapeutic misconception and other forms of misunderstanding while at the same time (paradoxically) challenging its salience. Using cancer clinical trials as an exemplar, we describe how methodological changes in early‐ and late‐phase clinical trial designs, as well as changes in the design and delivery of healthcare, impact upon the therapeutic misconception. We suggest that this provides an impetus to re‐examine the ethics of clinical research, particularly in relation to trial access, participant selection, communication and consent, and role delineation. (shrink)

Psychological literature indicates that actions performed with the assistance of cognition‐enhancing biomedical technologies are often deemed to be less praiseworthy than similar actions performed without such assistance. This study examines (i) whether this result extends to the bioenhancement of moral capacities, and (ii) if so, what explains the effect of moral bioenhancement on perceived praiseworthiness. The findings indicate that actions facilitated by morally bioenhanced individuals are considered less deserving of praise than similar actions facilitated by ‘traditional’ moral enhancement—for example, moral (...) self‐education. This diminished praise does not seem to be driven by an aversion to (moral) bioenhancement per se. Instead, it appears to be primarily attributable to a perceived lack of effort exerted by bioenhanced individuals in the course of their moral enhancement. Our findings advance the philosophical discourse on the foundations of praise in the context of moral bioenhancement by elucidating the empirical basis underlying some assumptions commonly employed to argue for or against the permissibility of moral bioenhancement. (shrink)

While the WHO, public health experts, and political leaders have referenced solidarity as an important part of our responses to COVID‐19, I consider how we build solidarity during pandemics in order to improve the effectiveness of our responses. I use Prainsack and Buyx's definition of solidarity, which highlights three different tiers: (1) interpersonal solidarity, (2) group solidarity, and (3) institutional solidarity. Each tier of solidarity importantly depends on the actions and norms established at the lower tiers. Although empathy and solidarity (...) are distinct moral concepts, I argue that the affective component of solidarity is important for motivating solidaristic action, and empathetic accounts of solidarity help us understand how we actually build solidarity from tier to tier. During pandemics, public health responses draw on different tiers of solidarity depending on the nature, scope, and timeline of the pandemic. Therefore, I analyze both COVID‐19 and HIV/AIDS using this framework to learn lessons about how solidarity can more effectively contribute to our ongoing public health responses during pandemics. Whereas we used institutional solidarity during COVID‐19 in a top‐down approach to building solidarity that often overlooked interpersonal and group solidarity, we used those lower tiers during HIV/AIDS in a bottom‐up approach because governments and public health institutions were initially unresponsive to the crisis. Thus, we need to ensure that we have a strong foundation of respect, trust, and so forth, on which to build solidarity from tier to tier and promote whichever tiers of solidarity are lacking during a given pandemic to improve our responses. (shrink)

Living labs are interdisciplinary and participatory initiatives aimed at bringing research closer to practice by involving stakeholders in all stages of research. Living labs align with the principles of participatory research methods as well as recent insights about how participatory ways of generating knowledge help to change practices in concrete settings with respect to specific problems. The participatory, open, and discussion‐oriented nature of living labs could be ideally suited to accompany ethical reflection and changes ensuing from reflection. To our knowledge, (...) living labs have not been explicitly trialed and reported in ethics literature. In this discussion paper, we report and discuss four initial issues that marked the process of setting up a living lab in ethics: (1) determining the goals and expected outcomes of an ethics living lab; (2) establishing operational procedures; (3) selecting communities and defining pilot projects; and (4) adopting a lens to tackle emerging questions and challenges. We explain these four issues and present the paths taken based on the novel and specific orientation, that is, living ethics, at the basis of this project. In alignment with living ethics and É‐LABO, we approach challenges as learning opportunities to ask not only “how” questions but also “why” questions. We hope that this discussion paper informed by our experience helps to clarify the theoretical, methodological, and practical approaches necessary to successfully adopt and employ living labs in ethics. (shrink)

<no abstract - brief excerpt> "...efforts at manipulating vulnerable populations into acting in particular ways that may not be in their best interest, has a history going back much longer. Arguably the internet turbocharged some of these efforts, but this has been happening for a long time.".

Although people who endorse conspiracy theories related to medicine often have negative attitudes toward particular health care measures and may even shun the healthcare system in general, conspiracy theories have received rather meager attention in bioethics literature. Consequently, and given that conspiracy theorizing appears rather prevalent, it has been maintained that there is significant need for bioethics debate over how to deal with conspiracy theories. While the proposals have typically focused on the effects that unwarranted conspiracy theories have in the (...) public health context, Nathan Stout's recent argument concentrates on the impacts that such theories have at the individual level of clinical decision‐making. In this article, I maintain that duly acknowledging the impacts of conspiracy theories that raise Stout's concern does not require bioethics debate over the proper response to the influence of conspiracy theories in healthcare. Having evaluated two possible objections, I conclude by briefly clarifying the purported import of the response to Stout. (shrink)

The anti‐natalist philosopher David Benatar defends a position asserting that all life is harmful, and that it is, therefore, wrong to have children. In this paper, I critique Benatar's less‐discussed claim that his anti‐natalism provides solutions to population ethics problems, such as the Non‐Identity Problem, the Repugnant Conclusion, and the Mere Addition Problem, all of which are presented in Derek Parfit's Reasons and Persons. Since the publication of his Better Never to Have Been, Benatar has continued to claim that its (...) provision of such solutions strengthens his defense of anti‐natalism. Although Benatar's view has received much criticism, this argument has not been discussed at length. I undertake a thorough examination of the argument and identify reasons to reject it. The central point of my critique is that the implications of Benatar's views in determining ranges of wrong and not‐wrong cases of procreation are extensionally inadequate when applied to the problems of population ethics. (shrink)

Value change is a phenomenon that is gaining increasing attention in ethical analyses of technologies. However, a comprehensive study of how reprogenetic technologies and values coevolve is lacking. To remedy this gap, in this overview article, I address the relationship between reprogenetics and value change. This contribution thus argues for the importance of investigating the phenomenon of value change in relation to the technological controversies discussed in bioethics. To meet this goal, I begin by clarifying, first, how technologies shape reproductive (...) choice. I then clarify what “values” and “moral values” are, how reprogenetic technologies are value laden, and what values are often discussed in reprogenetics debates. Next, I show five types of value changes that have occurred in advance in reproductive and genetic technologies. Finally, I argue for the bioethical relevance of discussing future techno-value change, pointing out the descriptive and normative challenges of this philosophical endeavor. (shrink)

Value change is a phenomenon that is gaining increasing attention in ethical analyses of technologies. However, a comprehensive study of how reprogenetic technologies and values coevolve is lacking. To remedy this gap, in this overview article, I address the relationship between reprogenetics and value change. This contribution thus argues for the importance of investigating the phenomenon of value change in relation to the technological controversies discussed in bioethics. To meet this goal, I begin by clarifying, first, how technologies shape reproductive (...) choice. I then clarify what “values” and “moral values” are, how reprogenetic technologies are value laden, and what values are often discussed in reprogenetics debates. Next, I show five types of value changes that have occurred in advance in reproductive and genetic technologies. Finally, I argue for the bioethical relevance of discussing future techno-value change, pointing out the descriptive and normative challenges of this philosophical endeavor. (shrink)