Biomedical Ethics

Joona Räsänen argues that vegans ought to be anti-natalists and therefore abstain from having children. More precisely, Räsänen claims that vegans who accept a utilitarian or rights-based argument for veganism, ought to, by parity of reasoning, accept an analogous argument for anti-natalism. In this paper, I argue that the reasons vegans have for refraining from purchasing animal products do not commit them to abstaining from having children. I provide novel arguments to the following conclusion: while there is good reason to (...) believe that factory farming results in a net disutility and involves treating non-human animals as mere means, there is not good reason to believe that having children results in a net disutility or involves treating the children as mere means. Subsequently, I respond to what I take to be Räsänen’s underlying reasoning—that vegans are committed to abstaining from other practices which cause unnecessary suffering. I respond by arguing that this is plausibly false as various practices which cause unnecessary suffering are likely permissible, whereas factory farming is not. (shrink)

A common justification for abortion rights is that the death of the fetus does not violate any of the fetus’s time-relative interests. The time-relative interest account (TRIA) of harm and wrongdoing tells us that a necessary condition for harming someone is that his or her time-relative interests are frustrated. Regarding the justification for abortion, this account falls prey to impairment arguments. Impairment arguments entertain cases of prenatal injury, such as the mother using illicit drugs that disable the child. The intuition (...) is that the child who is born with such disabilities is harmed by the mother’s drug use. But it is unclear what time-relative interest is violated in cases of prenatal harm. Typical responses to impairment arguments point out that the abortion case is different because the child does not exist to experience such harms; but in prenatal injury + survival cases, the child does live to experience those harms. Thus, the TRIA justification for abortion is not impugned by impairment counter-examples. This article argues that this response to impairment arguments is viciously circular. The response must say that so long as you kill the child, no harm is done. But this assumes that killing itself is morally inconsequential and is not itself a case of harm. The response to impairment arguments, then, assumes the permissibility of abortion. (shrink)

The temptation to use prospective observational studies (POS) instead of conducting difficult trials (RCTs) has always existed, but with the advent of powerful computers and large databases, it can become almost irresistible. We examine the potential consequences, were this to occur, by comparing two hypothetical studies of a new treatment: one RCT, and one POS. The POS inevitably submits more patients to inferior research methodology. In RCTs, patients are clearly informed of the research context, and 1:1 randomized allocation between experimental (...) and validated treatment balances risks for each patient. In POS, for each patient, the risks of receiving inferior treatment are impossible to estimate. The research context and the uncertainty are down-played, and patients and clinicians are at risk of becoming passive research subjects in studies performed from an outsider’s view, which potentially has extraneous objectives, and is conducted without their explicit, autonomous, and voluntary involvement and consent. (shrink)

Mental health chatbots (MHCBs) designed to support individuals in coping with mental health issues are rapidly advancing. Currently, these MHCBs are predominantly used in commercial rather than clinical contexts, but this might change soon. The question is whether this use is ethically desirable. This paper addresses a critical yet understudied concern: assuming that MHCBs cannot have genuine emotions, how this assumption may affect psychotherapy, and consequently the quality of treatment outcomes. We argue that if MHCBs lack emotions, they cannot have (...) genuine (affective) empathy or utilise countertransference. Consequently, this gives reason to worry that MHCBs are (a) more liable to harm and (b) less likely to benefit patients than human therapists. We discuss some responses to this worry and conclude that further empirical research is necessary to determine whether these worries are valid. We conclude that, even if these worries are valid, it does not mean that we should never use MHCBs. By discussing the broader ethical debate on the clinical use of chatbots, we point towards how further research can help us establish ethical boundaries for how we should use mental health chatbots. (shrink)

Suggestions that academic medicine is systemically racist are increasingly common in the medical literature. Such suggestions often rely upon expansive notions of systemic racism that are deeply controversial. The author argues for an empirical concept of systemic racism and offers a counter argument to a recent suggestion that academic medicine is systemically racist in its treatment of medical trainees: Anderson et al.’s (Academic Medicine, 98(8S), S28–S36, 2023) “The Long Shadow: a Historical Perspective on Racism in Medical Education.” Contra the authors (...) of “The Long Shadow,” the author argues that racial performance disparities in medical education cannot be validly attributed to racism without careful empirical confirmation; he further argues that standards of assessment in medical education cannot be properly deemed racist merely because minority trainees are disproportionately disadvantaged by them. Furthermore, the history of medicine and society in the Anglo-European West is not, as argued by the authors of “The Long Shadow,” best viewed as one long tale of racial oppression culminating in the present day pervasive racism of academic medicine in the United States. Racism is a deplorable stain on our history and our present but it is not the historical essence of Christianity, European civilization, Western medicine, or contemporary academic medical institutions. (shrink)

The study of rare diseases has long been an area of challenge for medical researchers, with agonizingly slow movement towards improved understanding of pathophysiology and treatments compared with more common illnesses. The push towards evidence-based medicine (EBM), which prioritizes certain types of evidence over others, poses a particular issue when mapped onto rare diseases, which may not be feasibly investigated using the methodologies endorsed by EBM, due to a number of constraints. While other trial designs have been suggested to overcome (...) these limitations (with varying success), perhaps the most recent and enthusiastically adopted is the application of artificial intelligence to rare disease data. This paper critically examines the pitfalls of EBM (and its trial design offshoots) as it pertains to rare diseases, exploring the current landscape of AI as a potential solution to these challenges. This discussion is also taken a step further, providing philosophical commentary on the weaknesses and dangers of AI algorithms applied to rare disease research. While not proposing a singular solution, this article does provide a thoughtful reminder that no ‘one-size-fits-all’ approach exists in the complex world of rare diseases. We must balance cautious optimism with critical evaluation of new research paradigms and technology, while at the same time not neglecting the ever-important aspect of patient values and preferences, which may be challenging to incorporate into computer-driven models. (shrink)

Derek Parfit’s view of personal identity raises questions about whether advance decisions refusing life-saving treatment should be honored in cases where a patient loses psychological continuity; it implies that these advance decisions would not be self-determining at all. However, rather than accepting that an unknown metaphysical ‘further fact’ underpins agential unity, one can accept Parfit’s view but offer a different account of what it implies morally. Part II of this article argues that contractual obligations provide a moral basis for honoring (...) advance decisions refusing life-saving and/or life-sustaining medical treatment; advance decisions have similarities to contracts, such as life insurance policies and will-contracts, that come into effect when the psychological discontinuity is through death. (shrink)

One of the most important motifs within (medical) ethics is scarcity: where essential (health) resources are scarce, urgent ethical questions arise. Over the last decade, at least 250 papers addressing the allocation of scarce health resources have been published in the Journal of Medical Ethics alone.1 In the typical set-up, the authors introduce a situation of scarcity and then review and adjudicate the available or recommended courses of action, sometimes through the lens of a pet normative ethical theory. It is (...) much less common for (medical) ethicists to focus their enquiries on the origins of scarcity. Why aren’t there sufficient health resources to go around? Who caused the scarcity, and how should they be held responsible? These questions are also firmly within the remit of the discipline. Discussions of scarcity tend to circumvent these difficult questions by focussing on exceptional cases in Global North settings, where scarcity is relatively rare, and is sometimes defensible or insoluble. For example: it would be wasteful for a hospital to overstock expensive, bulky, energetically intensive, specialist equipment whose supply would only be challenged under the most extreme and unforeseen circumstances (eg, a pandemic), and there may never be sufficient usable donor organs to meet the demand for transplants. Much less attention is given to under-resourced settings, generally in the Global South, where scarcity is common, and is often both indefensible and soluble. The literature appears to favour what is ‘unusual’ and ‘interesting’ in some contexts, rather than what is commonplace, and by that fact more worrying, in others. This division of attention entrenches the idea that scarcity is a fixed feature of certain places and lives. Why do medical ethicists so often fight shy of these meta-questions? They are, of course, harder and messier. More work and greater care are needed to contextualise …. (shrink)

Several European countries have recently started taking steps to protect access to abortion. France is one of these, with a bill having made its way through the legislature to enshrine the ‘liberté garantie’ (‘guaranteed freedom’) to an abortion in its constitution. It is the first country in the world to explicitly include abortion access in its constitution. Although abortion was decriminalised in France in 1975, proponents of the bill stated that they were motivated by protecting freedom for future generations (rather (...) than any perceived current threats)—the French minister for justice described this as characteristic of constitutional lawmaking.1 Enshrining such a freedom within the constitution was not without opposition. Although the bill passed through the Assemblée in January 2024 with 99 votes in favour and 13 against,2 it followed 8 hours of debate in which a number of issues were discussed. The Sénat (the upper house of Parliament) was initially thought to be more likely to oppose the bill. The bill was carried through the Sénat, however, with its Law Commission indicating prior to debate that it would not oppose making abortion a constitutional freedom, despite ‘some reservations’ about the text of the bill.3 Some of the issues raised in the Assemblée related to the language used, with some parliamentarians preferring to constitutionalise the ‘droit’ (right) to abortion; in line with language used in previous debates on the subject, rather than the term ‘liberté’ that was settled on.4 Other concerns were raised about the appropriateness of ‘preventative constitutionalisation’,5 the potential impact on a clinician’s ability to exercise conscientious objection6 and fears of creating an imbalance more generally between women’s …. (shrink)

The commentaries in response to our feature paper1 are indicative of the varied perspectives that can be taken towards artificial amnion and placenta technology (AAPT) and more specifically its relationship with pregnancy (loss). Kennedy rightly argues that empirical research is essential for understanding the experiences of pregnancy loss and AAPT2 and our own advocacy of empirical research is evident in previous work.3–5 Kennedy also acknowledges the current impossibility of researching AAPT experiences since it has not yet been applied in clinical (...) settings. It is precisely for this reason that we draw on the reported experiences of neonatal intensive care (NICU) parents since they present the closest analogy which can be drawn with the technology.1 What we reject in Kennedy’s response, however, is the claim that the experiences of NICU parents have been ‘exploited’ by us.2 Studies documenting the experiences of NICU parents were drawn on to indicate that our considerations are more than mere speculation. As stated, the experiences of NICU parents, particularly the pregnant individual who experiences pregnancy loss, are the closest indication we have of how AAPT and what it entails may be experienced. To claim that this data is being exploited by us is to undermine the very purpose that such research is undertaken—to indicate how future care may be improved. It would be much more harmful to not use this information. While we believe that experiences of …. (shrink)

Preterm birth is defined as delivery occurring before 37 weeks gestation.1 Infants born prematurely have increased risks of morbidity and mortality throughout life, especially during the first year. These risks increase as the gestational age at birth decreases.2 Additionally, there are significant racial and ethnic differences in preterm birth rates. In 2022, the rate of preterm birth among non-Hispanic black women was approximately 50% higher than that observed in non-Hispanic white women.1 The outcomes for these infants are also disparate–preterm birth (...) and low birth weight are the second-leading causes of infant mortality (deaths before 1 year of age). Notably, among preterm neonates, infants born to non-Hispanic black women have a mortality rate more than double that of infants born to non-Hispanic white mothers.3 Importantly, there is a small but significant group of neonates that can be classified as severely premature (those born <28 weeks). Infants born before 28 weeks have varied and uncertain outcomes. While this group accounts for only 0.4% of preterm births, it also accounts for 40% of deaths among preterm neonates.4 As noted by Romanis and Adkins, the advent of artificial amnion and placenta technology (AAPT) holds promise for its potential to address the physiologic complications and mortality risks of extreme prematurity by introducing amniotic substitutes that mimic in vivo placental oxygenation and substrate delivery. In contrast …. (shrink)

In their paper, Romanis and Adkins delve into the potential impact of artificial amnion and placenta technology (AAPT) on cases of pregnancy loss1 that do not involve procreative loss. First, they call for more recognition of the negative feelings a person might have due to the premature end of their pregnant state. They claim that, should AAPT minimise concerns about prematurity as anticipated, individuals might feel pressured to opt for partial ectogestation to preserve their or their fetus’ well-being; moreover, they (...) point out that the feelings of loss in the context of AAPT are likely to be worse than the ones reported in neonatal intensive care units cases. Finally, they advocate for care pathways focusing on how the transfer of a fetus to the AAPT could affect the pregnant person, with particular attention to managing the grief potentially caused by the pregnancy loss. I praise the authors for such a call to action—especially since partial ectogestation is expected to become a reality in the short-term future—and I share their demands for additional and more attentive care of (formerly) pregnant patients. However, I am concerned that their approach is so focused on negative feelings towards pregnancy loss that it risks becoming …. (shrink)

In their article, Romanis and Adkins delineate pregnancy loss and procreative loss to show that the former is possible without the latter, as in the case of artificial amnion and placenta technology.1 Here, we are interested in examining the reverse—procreative loss without pregnancy loss—to further tease apart these two types of loss. We discuss two cases: being forced to continue a pregnancy despite fetal demise due to abortion restrictions and choosing to selectively reduce a multifetal pregnancy. Our analysis buttresses the (...) authors’ conclusion: due to our fetal-centric conception of pregnancy, we are only able to value pregnancy instrumentally (ie, for the fetus), not intrinsically. Understanding pregnancy as an embodied state rather than a process that not only acknowledges the intrinsic value of pregnancy for pregnant people but also encourages society to intrinsically value pregnant people is important. In 2022, the Supreme Court of the United States removed the constitutional right to an abortion in Dobbs v Jackson Women’s Health Organization, shifting the responsibility of determining abortion regulations to individual US states.2 Due to the Dobbs decision, there …. (shrink)

Romanis and Adkins discuss pregnancy loss in relation to artificial amnion and placenta technology (AAPT) for treatment of extremely preterm infants.1 I agree with the authors that AAPT, although it is expected to provide better care for extremely preterm infants, will also be challenging for parents. I, therefore, commend Romanis and Adkins for promoting a more holistic care that includes parents and pregnant persons. However, I believe that they create two false dichotomies, one between the pregnant person/parent and the fetus/child (...) and one between current neonatal intensive care unit (NICU) and AAPT that hinder holistic care. Romanis and Adkins correctly point out that much of the discourse and care surrounding preterm deliveries focuses mainly on the infant. I agree with Romanis and Adkins that true holistic care should also include the parents rather than focusing exclusively on the child. However, the language they use to petition for more inclusive care can be problematic and counteractive to achieve holistic care. The problem is that they accuse any fetal/child consideration of being fetal-centric and, in the same breath, they state that it is something to be challenged. This attitude is problematic as it feeds into the rhetoric of the maternal–fetal conflict. This is a common rhetoric in reproductive and neonatal care used mainly in situations …. (shrink)

Romanis and Adkins explore the near-term prospect of artificial amnion and placenta technology (AAPT) which is being developed to supplement the gestational process following the premature ending of a pregnancy.1 While fetal-centric narratives prevail in discussions surrounding AAPT, the authors subvert this trend by centering the experience of pregnant persons with respect to pregnancy loss. The overarching aim of their paper is to move beyond a ‘philosophical understanding of pregnancy towards practical-orientated conclusions regarding the care pathways surrounding [AAPT]’ (Romanis and (...) Adkins,1 p1). This commentary will critically examine the viability of this aim. Romanis and Adkins use the term ‘pregnancy loss’ to refer to the phenomenon where individuals experience a complex set of emotions following the premature ending of pregnancy, despite the survival of the gestated entity. Following Golish and Powell, the authors note how parents may experience contradictory emotions, such as joy mixed with grief, as well as a range of negative feelings including shame, disappointment and a sense of failure.2 At present, this phenomenon has been recognised among parents, particularly the (formerly) pregnant person, in the context of neonatal intensive care units (NICUs) when the infant survives preterm delivery and …. (shrink)

In this paper, we explore how the prospect of artificial placenta technology (nearing clinical trials in human subjects) should encourage further consideration of the loss experienced by individuals when their pregnancy ends unexpectedly. Discussions of pregnancy loss are intertwined with procreative loss, whereby the gestated entity has died when the pregnancy ends. However, we demonstrate how pregnancy loss can and does exist separate to procreative loss in circumstances where the gestated entity survives the premature ending of the pregnancy. In outlining (...) the value that can be attached to pregnancy beyond fetal-centric narratives, we illustrate how pregnancy loss, separate to procreative loss, can be experienced. This loss has already been recognised among parents who have experienced an unexpected early ending of their pregnancy, resulting in their child being cared for in neonatal intensive care unit. Artificial placentas, however, may exacerbate these feelings and make pregnancy loss (without procreative loss) more visible. We argue that pregnancy is an embodied state in which gestation is facilitated by the body but gestation itself should be recognised as a process—and one that could be separable from pregnancy. In demarcating the two, we explore the different ways in which pregnancy loss can be understood. Our objective in this paper goes beyond contributing to our philosophical understanding of pregnancy towards practical-orientated conclusions regarding the care pathways surrounding the artificial placenta. We make recommendations including the need for counselling and careful consideration of the language used when an artificial placenta is used. (shrink)

Genetic testing has familial implications. Counsellors find themselves in (moral) conflict between medical confidentiality (towards the patient) and a potential right or even duty to warn at-risk relatives. Legal regulations vary between countries. English literature about German law is scarce. We reviewed the literature of relevant legal cases, focussing on German law, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. This article aims to familiarise counsellors with their responsibilities, compare the situation between countries and point out (...) legally unresolved areas.According to the German Genetic Diagnostics Act (Gendiagnostikgesetz) in case of an ‘avoidable or treatable’ genetic disorder, geneticists ought to confine themselves to the obligated advice to the patient. Whether a breach of the duty of confidentiality can be justified in exceptional cases by ‘necessity as justification’ for actively informing relatives at risk remains legally unclear. In case of a ‘neither avoidable nor treatable’ genetic disease, geneticists should also refrain from actively informing relatives as the justifiable state of emergency does not permit to break the duty of confidentiality. (shrink)

We discuss a case where clinical genomic investigation of muscle weakness unexpectedly found a genetic variant that might (or might not) predispose to kidney cancer. We argue that despite its off-target and uncertain nature, this variant should be discussed with the man who had the test, not because it is medical information, but because this discussion would allow the further clinical evaluation that might lead it to becoming so. We argue that while prominent ethical debates around genomics often take ‘results’ (...) as a starting point and ask questions as to whether to look for and how to react to them, the construction of genomic results is fraught with ethical complexity, although often couched as a primarily technical problem. We highlight the need for greater focus on, and appreciation of, the ethical work undertaken daily by scientists and clinicians working in genomic medicine and discuss how public conversations around genomics need to adapt to prepare future patients for potentially uncertain and unexpected outcomes from clinical genomic tests. (shrink)

Giubiliniet aloffer some helpful reflections on the conscientious provision of medical care and whether and in what circumstances professional associations ought to support the conscientious provision of abortion in circumstances where abortion is banned or heavily restricted. I have several reservations, however, about the argument developed in the article. First, the essay makes questionable use of the case of Savita Halappanavar to justify its central argument about conscientious provision. Second, there is an apparent inconsistency between this article and the authors’ (...) statements elsewhere about the conscientious refusal of care. Third, there are risks that attend to professional associations supporting practitioners who break the law, and yet Giubiliniet aldo not give sufficient attention to this. This response will briefly discuss these three concerns. (shrink)

Countries that abolished donor anonymity have imposed age limits for access to certain types of information by donor offspring. In the UK and the Netherlands, a debate has started on whether these age limits should be lowered or abolished all together. This article presents some arguments against lowering the age limits as a general rule for all donor children. The focus is on whether one should give a child the right to obtain the identity of the donor at an earlier (...) age than is presently stipulated. The first argument is that there is no evidence that a change in age will increase the total well-being of the donor offspring as a group. The second argument stresses that the rights language used for the donor-conceived child isolates the child from his or her family and this is unlikely to be in the best interest of the child. Finally, lowering the age limit reintroduces the genetic father in the family and expresses the bionormative ideology that contradicts gamete donation as a practice. (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)

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)

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)

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)

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)

Poland has faced two waves of migration: the first was of irregular asylum seekers, which led to the humanitarian crisis on the eastern EU–Belarusian border since 2021; the second was of Ukrainians fleeing the Russian invasion. Although there are noticeable differences between these situations, and between the different reactions of the Polish authorities, it is possible to juxtapose them in terms of the right to health. The normative content of refugee and human rights law is the starting point for reconstructing (...) the meaning of the terms ‘refugee’ and ‘right to health’. A refugee is a person who needs international protection because of a well-founded fear of harm, which is not limited to persecution as defined by the Refugee Convention but also includes situations of international and non-international armed conflict. The right to health, which includes, inter alia, entitlements to a ‘system of health protection’ and ‘underlying determinations of health’, is reconstructed on the basis of human rights law and refugee and migration law. There are no legal and moral grounds to grant the right to health differentially to different groups of refugees. Nondiscriminatory health policy requires that refugees have the same access to health care as nationals, although their specific health needs resulting from past experiences and refugee situation require special treatment, that is, an appropriate refugee health policy. The broad understanding of the underlying determinants of health demonstrates the importance of overall migration policy for refugees’ health, which can jeopardise the fragile good of refugee health. (shrink)

A life of the mind can be lived only by creatures who know that they have minds. We call these creatures “persons,” and currently, all such persons THAT we know OF are “alive” in the biological sense. But are there, or could there be, either in the future or elsewhere in the universe, creatures with “a life of the mind” that are not “alive” in the sense that we humans usually understand this term today?

Amaç: Kanserle yaşayan bireylerin (KYB) bakımında, resmiyette görünür olmayan ve çoğunlukla herhangi bir profesyonel donanıma sahip olmayan, ama sürecin başından sonuna, hasta bireye eşlik eden bakım verenler kritik öneme sahiptir. Baş etmesi zor bir hastalık olan kanserle mücadele eden bireylerin bakımında, bakım verenler fiziksel, zihinsel ve sosyal birtakım zorluklarla karşılaşmaktadır. Bu araştırma, KYB’lere bakım veren, yakınlarının karşılaştıkları zorlukları gündeme getirmeyi ve ihtimam etiği perspektifinden, bakım verenlerin bakımına yönelik öneriler sunmayı amaçlamaktadır. Gereç ve Yöntem: Bu araştırma tanımlayıcı ve kesitsel olup araştırmanın (...) evreni Marmara Üniversitesi Pendik Eğitim ve Araştırma Hastanesi (MÜPEAH) Onkoloji kliniğinde takip edilen, 15 Mart-5 Nisan tarihleri arasında kemoterapi ünitesine ve servis hizmetlerine başvuran KYB’lerin bakım veren yakınlarıdır. KYB’lere bakım verenlerin umutsuzluk derecelerini tespit etmek ve bunu etkileyen faktörleri ölçmek için, veri toplama aracı olarak; sosyodemografik sorular, bakım alan bireyin hastalık derecesine yönelik sorular ve Beck Umutsuzluk Ölçeği sorularından oluşan bir anket elden dağıtılmıştır. Anket bakım verene yönelik sosyodemografik sorular 8, KYB’nin hastalığının durumu ile ilgili sorular 7, Beck Umutsuzluk Ölçeği 20 olmak üzere 35 sorudan oluşmaktadır ve yaklaşık 10 dakikada tamamlanmaktadır. Elde edilen veriler önce Microsoft Excel aracılığıyla dijitalleştirilmiş, ardından IBM SPSS 27.0.1 sürümüyle analiz edilmiştir. Verilerin analizinde Ki-kare, Fisher’s Exact testi ve Pearson Korelasyon analizi kullanılmış, istatistiksel anlamlılık değeri için p<0.05 kabul edilmiştir. Bulgular: Ankete katılan 151 bakım verenin 83’ü (%55,3) kadın, 67’si (%44,7) erkektir. Katılımcıların yaş ortalaması 40,09’dur. Bakım verenlerin %41,1’i umutsuzluk düzeyi ölçeğinde “minimal ya da yok”, %39,7'si "hafif düzeyde", %13.2'si orta düzeyde ve %6’sı “aşırı düzeyde” skorunu almıştır. KYB’lere bakım verenlerin demografik özellikleri ile umutsuzluk düzeyi arasında anlamlı bir ilişki bulunmamıştır. Bakım verenlerin yaşı, cinsiyeti, medeni durumu, gelir durumu ve bakım verme süresi ile umutsuzluk skorları arasında anlamlı bir ilişki bulunmazken, eğitim seviyesi ile umutsuzluk skorları arasında anlamlı bir ilişki bulunmuştur. (p=0,019). Sonuç: Bakım verenlerin, umutsuzluk düzeyleri göz önüne alındığında, önemli psikolojik yükler taşıdığına ve bu yükün, özellikle bakım verenin eğitim seviyesi ile hastanın sağlık durumu arasında belirgin ilişkiler gösterdiğine ulaşılmıştır. Bu bilgiler ışığında, sosyodemografik özelliklerin bakım verenleri önemli ölçüde etkilediği görülmüştür. Bakım verenlerin duygusal yükleri, bakım alıcılarla olan ilişkileri ve bu sürecin hem bireysel hem toplumsal düzeyde getirdiği zorluklar ve sorumluluklar, ihtimam etiği kapsamında ele alınmıştır. Araştırma neticesinde bakım verenlerin karşılaştığı zorluklar ve ihtiyaçlarının daha geniş bir toplumsal ve etik perspektiften ele alınmasının gerekliliği ortaya konmuştur. Bakım verenlerin bakımına yönelik öneriler, duygusal destek; teorik eğitim ve bilgilendirme desteği; pratik ve uygulamalı destek; kaynak erişimi ve tahsisi; tanıma ve doğrulama başlıkları altında sunulmuştur. (shrink)

Background Clinical empathy is an essential part of healthcare, and patient-centered care models require clinical empathy to be established. Despite this, little is known about its measurement in the neonatal scenario. Research Aim To measure clinical empathy in health professionals who work with medium and high-risk neonates and build a construct of this empathy. Research Design Single-center survey study. Participants and Research Context The Jefferson Scale of Empathy for Health Professionals questionnaire was applied to health professionals who work in an (...) intensive care unit and a medium-risk unit, in Brazil. Analysis was done using descriptive statistics and a factor analysis model, to build the construct of empathy. Overall empathy was calculated, and the domains’ punctuations were analyzed and compared to the maximum punctuation possible. The study followed the STROBE checklist. Ethical Considerations This study was approved by the Research Ethics Committee of the institution. All participants signed the informed consent form. Participants’ confidentiality and anonymity were protected. Findings Median empathy was 117 (IQR 113–124). The domain of Walking in the Patient’s Shoes had lower scores and represented 77.6% of the maximum punctuation possible. The factor analysis included three factors named Understanding, Experiences, and Treatment, and Emotional Relationships, explaining 64.3% of the overall variance. The domain Walking in the Patient’s Shoes was not included in the model. Conclusions In this scenario, clinical empathy should improve. There is a need to improve the domain of Walking in the Patient’s Shoes, in this case, the neonate, and provide more empathic care to them. (shrink)

Savulescu and Cameron supported selectively locking down the elderly during the COVID-19 pandemic on two grounds: first, that preserving total lockdown would entail levelling down and, second, that levelling down is wrong. Their first assumption has been thoroughly addressed, but more can be said about their wider antiegalitarian point that levelling down is simply wrong. Egalitarians are not defenceless against the levelling-down objection. Even though some consider it the most serious challenge to supporters of equality, egalitarianism possesses sound reasons to (...) assert, not only that something valuable is preserved when we level down, but also that preserving it may be, in certain circumstances, preferable to pursuing other fundamental moral goals. Although troublesome from a well-being maximising standpoint, levelling down ensures that healthcare policy reflects a commitment with the idea that people are equal in moral worth. That commitment is important enough to trump certain improvements in individual well-being. In the case of pandemic lockdowns, not all the interests protected by free movement are as fundamental as to pursue them at the cost of equality. Savulescu and Cameron’s framework is so reliant on the view that levelling down is wrong that it fails to account for the valuable loss that having the elderly suffer alone represents. (shrink)

Owing to technological advances, genomic medicine is moving from specific to broader genetic analyses and from specialised to mainstream services. Sahan et al 1 point to complex ethical cases encountered by clinical laboratory scientists in the context of genomic medicine’s expansion. The authors discuss debates on interpreting and reporting genetic results, offering extended genetic testing and differences in the perceived responsibility of clinical laboratory scientists in different settings. As demonstrated by the case examples in the article, while genomic medicine holds (...) the promise of providing clinical answers, its mainstreaming can introduce a new type of ‘odyssey’ for patients and/or relatives, such as when there are uncertain findings. The integration of genomics in healthcare at large can also impact communication decisions and perceptions of responsibility for clinical laboratory scientists. Clinical laboratory scientists might report less to non-specialists than to genetic/genomic specialists, as they feel responsible for minimising the potential of non-specialists misunderstanding, misinterpreting or miscommunicating the genetic findings to patients.1 In this way, the perceived responsibility affects patients and the type and amount of genetic information they receive. We agree with the authors that current limitations in knowledge and capabilities among non-specialist clinicians necessitate identifying effective ways to communicate outcomes and …. (shrink)

In Sahan et al ’s article,1 they present the ethical challenges faced by clinical laboratory scientists in genetic medicine, including labour allocation and responsibility, interpretation and accuracy of results with new technologies, and the need for better standardisation and ethical consistency. At the same time, they also propose a potential solution to the aforementioned challenges: ethical preparedness(EP). Along with their vivid case discussions and insightful analysis, I would like to propose two more points that are worth further examination and discussion (...) to aid stakeholders in better comprehending the ethical issues that clinical laboratory scientists face in the practice of genetic medicine. The case 1 reported by Sahan et al raises concerns about who should be responsible for tracking families or individuals with genetic results, particularly in the absence of mainstream services to track future risks. However, this should not be a factor influencing the decision to inform gene carriers. If there is a clear division of responsibilities in current practice, clinical laboratory scientists can report detected gene carriers without psychological burden. However, the decision to report gene carriers should be based on who is being served when clinical laboratory scientists face genetic problems in clinical practice and who is being considered when …. (shrink)

This article explores the profound impact of visualism and visual perception in the context of medical imaging diagnostics. It emphasizes the intricate interplay among vision, embodiment, subjectivity, language, and historicity within the realm of medical science and technology, with a specific focus on image consciousness. The study delves into the role of subjectivity in perception, facilitating the communication of opacity and historicity to the perceiving individual. Additionally, it scrutinizes the image interpretation process, drawing parallels to text interpretation and highlighting the (...) influence of personal biases and individuality in medical practice. By revisiting Husserl’s conceptualization of “image consciousness” and introducing the notion of “image theme”, the paper seeks to establish a theoretical framework for making sense of images within the context of technological interpretation. A key objective is to enhance the phenomenology of technology through a systematic analysis of medical imaging diagnosis, contributing to an expanded epistemological foundation for medical practice. The article recognizes that the construction of medical knowledge incorporates subjective elements, especially within a historical context. The interpretation of images involves both instrumental and expert interpretation, with human subjectivity playing a crucial role. The article asserts that human creativity and conscious engagement are indispensable in interpreting all medical images. (shrink)

Regenerative Medicine promises to develop treatments to regrow healthy tissues and cure the physical body. One of the emerging developments within this field is regenerative implants, such as jawbone or heart valve implants, that can be broken down by the body and are gradually replaced with living tissue. Yet challenges for embodiment are to be expected, given that the implants are designed to integrate deeply into the tissue of the living body, so that implant and body become one. In this (...) paper, we explore how regenerative implants may affect the embodied experience of implant recipients. To this end, we take a phenomenological approach. First, we explore what insights the existing phenomenological and empirical literature on embodiment offers regarding the experience of illness and of living with regular (non-regenerative) implants and organ transplants. Second, we apply these insights to better understand how future implant recipients might experience living with regenerative implants. Third, we conclude that concepts and considerations from the existing phenomenological literature do not sufficiently address what it might be like to live with an implantable technology that, over time, becomes one with the living body. We argue that the interwovenness and intimate relationship of people living with regenerative implants should be understood in terms of ‘entanglement’. Entanglement allows us to explore the complexities of human-technology relations, acknowledging the inseparability of humans and implantable technologies. Our theoretical foundations regarding the role of embodiment may be tested empirically once more people will be living with regenerative implants. (shrink)

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a “living (...) ethics”, described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process. (shrink)

Phronesis is often described as a ‘practical wisdom’ adapted to the matters of everyday human life. Phronesis enables one to judge what is at stake in a situation and what means are required to bring about a good outcome. In medicine, phronesis tends to be called upon to deal with ethical issues and to offer a critique of clinical practice as a straightforward instrumental application of scientific knowledge. There is, however, a paucity of empirical studies of phronesis, including in medicine. (...) Using a hermeneutic and phenomenological approach, this inquiry explores how phronesis is manifest in the stories of clinical practice of eleven exemplary physicians. The findings highlight five overarching themes: ethos (or character) of the physician, clinical habitus revealed in physician know-how, encountering the patient with attentiveness, modes of reasoning amidst complexity, and embodied perceptions (such as intuitions or gut feeling). The findings open a discussion about the contingent nature of clinical situations, a hermeneutic mode of clinical thinking, tacit dimensions of being and doing in clinical practice, the centrality of caring relations with patients, and the elusive quality of some aspects of practice. This study deepens understandings of the nature of phronesis within clinical settings and proposes ‘Clinical phronesis’ as a descriptor for its appearance and role in the daily practice of (exemplary) physicians. (shrink)

Even in the Netherlands, where the practice of physician-assisted death (PAD) has been legalized for over 20 years, there is no such thing as a ‘right to die’. Especially patients with extraordinary requests, such as a wish for PAD based on psychiatric suffering, advanced dementia, or (a limited number of) multiple geriatric syndromes, encounter barriers in access to PAD. In this paper, we discuss whether these barriers can be justified in the context of the Dutch situation where PAD is legally (...) permitted for those who suffer unbearably and hopelessly as a result of medical conditions. Furthermore, we explore whether there are options to address some of the barriers or their consequences, both within the Dutch legal framework or by adjusting the legal framework, and whether these options are feasible. We conclude that although there are insufficient arguments to overrule the doctor’s freedom of conscience in the Netherlands, there are ways to address some of the barriers, mainly by offering support to doctors that would be willing to support a request. Moreover, we believe it is morally required to reduce or mitigate where possible the negative consequences of the barriers for patients, such as the long waiting time for those who suffer from psychiatric disorders, because it is unlikely the adjustments suggested to the system will ensure reasonable access for these patient groups. (shrink)

This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be (...) more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies. (shrink)

This manuscript draws on the moral norms arising from the nuanced accounts of epistemic (in)justice and social identity in relational autonomy to normatively assess and articulate the ethical problems associated with using AI in patient care in light of the Black Box problem. The article also describes how black-boxed AI may be used within the healthcare system. The manuscript highlights what needs to happen to align AI with the moral norms it draws on. Deeper thinking – from other backgrounds other (...) than decolonial scholarship and relational autonomy – about the impact of AI on the human experience needs to be done to appreciate any other barriers that may exist. Future studies can take up this task. (shrink)

This article discusses the relationship between two theories about the badness of death, the Life-Comparative Account and the Gradualist Account, and two methods of operationalizing severity in health care priority setting, Absolute Shortfall and Proportional Shortfall. The aim is that theories about the badness of death can influence and inform the idea of the basis of severity as a priority setting criterion. I argue that there are strong similarities between the Life-Comparative Account and Absolute Shortfall, and since the Life-Comparative Account (...) is one of the most reasonable accounts of the badness of death, this provides some support for using Absolute Shortfall. I also argue that it is difficult to find support for Proportional Shortfall from theories about the badness of death, and also, that it is difficult to find support for Gradualist Account from theories about severity. (shrink)

Trait Selective Abortions (TSA) have come under critique as a medical practice that presents potential disabled infants as burdens and lacking the potential for meaningful lives. This paper, using the author’s background as a disabled person, contends that the philosophy underpinning TSAs reflects liberal society’s lack of a theory of needs. The author argues for a care ethics based approach informed by disability analyses to engage with TSAs.

This article adopts Husserl’s transcendental phenomenology to explore the complex relationship between patients and physicians. It delves into the coexistence of two distinct voices in the realm of medicine and health: the “voice of medicine” and the “voice of life-world.” Divided into three sections, the article emphasizes the importance of shifting from a scientific-medical attitude to a more personalistic approach in physician–patient interactions. This shift aims to prevent depersonalization and desubjectification. Additionally, it highlights the equal and irreducible nature of patients (...) while acknowledging the vital role physicians hold in the realm of illness. The article stresses the need for a balanced and equitable relationship between both parties, rooted in the shared life-world. Moreover, empathy is underscored as a crucial element in fostering meaningful dialogue, wherein understanding diverse perspectives and attitudes towards illness is paramount. The article argues that differences between patients and physicians are necessary for empathy, while shared similarities form its foundation. Ultimately, a harmonious relationship facilitates empathy and enables the constitution of a new sense of life for both patients and physicians. (shrink)

The proposal to allow assisted dying for people who are not severely ill reignited the Dutch end‐of‐life debate when it was submitted in 2016. A key criticism of this proposal is that it is too radical a departure from the safe and well‐functioning system the Netherlands already has. The goal of this article is to respond to this criticism and question whether the Dutch system really can be described as safe and well functioning. I will reconsider the usefulness of the (...) suffering criterion, and I will ultimately argue this criterion should be rejected altogether. Instead, we should consider moving towards an autonomy‐only approach to assisted dying. This would resolve some significant issues occurring under the current system of assisted dying in the Netherlands and ultimately make the process safer and better functioning. I will then consider some possible objections to adopting an autonomy‐only approach and provide some preliminary responses to these also. I will finally highlight some potential areas where further research may be necessary, namely, how to mitigate the effect of external factors such as poverty or other life aspects that may have the potential to distort the individual's ability to make autonomous decisions. I will also consider some possible international lessons that can be taken from both current as well as the proposed practice in the Netherlands. (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)

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)