Biomedical Ethics

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)

Currently, in the United States, there is no legal obligation for medical professionals or civil courts to uphold patients’ Advance Directives (ADs) regarding end-of-life care. The applicability and standing of ADs prepared by Alzheimer’s patients is a persistent issue in bioethics. Those who argue against giving ADs full status take two main approaches: (1) appealing to beneficence on behalf of the Alzheimer’s patient and (2) claiming that there is no longer any personal equivalence between the AD’s creator and the subject (...) of the AD. In this paper, I present profound arguments against both approaches. Firstly, I argue that the principle of beneficence cannot apply in the case of Alzheimer’s patients, and, secondly, that the moral and legal authority of the AD need not depend on strict equivalence of personal identity. I conclude by arguing that valid ADs protect the dignity and autonomy of Alzheimer’s patients and that, therefore, there are moral obligations to uphold ADs which should be reflected in public policy and legislation. (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)

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)

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)

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)

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)

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)

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)

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)

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 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)

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)

Bioethicists influence practices and policies in medicine, science, and public health. However, little is known about bioethicists’ views. We recently surveyed 824 U.S. bioethicists on a wide range of ethical issues, including topics related to abortion, medical aid in dying, and resource allocation, among others. We also asked bioethicists about their demographic, religious, academic, and professional backgrounds. We find that bioethicists’ normative commitments predict their views on bioethical issues. We also find that, in important ways, bioethicists’ views do not align (...) with those of the U.S. public: for instance, bioethicists are more likely than members of the public to think abortion is ethically permissible but are less likely to believe compensating organ donors is. Our demographic results indicate the field of bioethics is far less diverse than the U.S. population—less diverse even than other academic disciplines—suggesting far more work needs to be done to build an inclusive field. (shrink)

Doctors’ strikes are legally permissible in the UK, with the situation differing in other countries. But are they morally permissible? Doug McConnell and Darren Mann have systematically attempted to dismiss the arguments for the moral impermissibility of doctors’ strikes and creatively attempted to provide further moral justification for them. Unfortunately for striking doctors, they fail to achieve this. Meanwhile, junior doctors’ strikes have continued in the UK through 2023 and have now extended into 2024. In this response, which focuses on (...) the UK situation and specifically junior doctors’ strikes in the National Health Service (NHS) in England, I will demonstrate a central problem with their arguments—namely that they underplay the harms caused by prolonged doctors’ strikes by ignoring the harms to patients with cancer. This weakens their conclusion that strikes are morally permissible in terms of the conditions and thresholds they set. I then provide a psychological critique of their justification for strikes in terms of the interests of the public. It follows that invoking the controversial concept of supererogatory action is ungrounded but also absurd when you consider time-critical cancer care. If those representing striking doctors wish to maintain a modicum of moral respectability, they should mitigate for patients with cancer and negotiate reasonably and with urgency. (shrink)

The literature on the determination of death has often if not always assumed that the concept of human death should be defined in terms of the end of the human organism. I argue that this broadly biological conceptualization of human death cannot constitute a basis for agreement in a pluralistic society characterized by a variety of reasonable views on the nature of our existence as embodied beings. Rather, following Robert Veatch, I suggest that we must define death in moralized terms, (...) as the loss of an especially significant sort of moral standing. Departing from Veatch, however, I argue that we should not understand death in terms of the loss of all moral status whatsoever. Rather, I argue, what we should argue about, when we argue about death, is when and why people lose their rights-claims to the protection and promotion of their basic bodily functioning. (shrink)

This special issue aims to spotlight the individual, lived experiences of caregivers and those receiving care–areas often overshadowed by clinical and medicalized narratives within clinical ethics. Our aim is to enrich the discourse by incorporating stories and narratives of medical care and challenge existing clinical practices by emphasizing patient and practitioner experiences. Through a blend of clinical and academic insights, this issue provides phenomenological narratives, highlighting the importance of lived experiences in understanding and improving clinical caregiving practices. The contributions, ranging (...) from theoretical analyses to personal narratives, explore various aspects of caregiving. Each article contributes to a deeper understanding of the phenomenologies of care, advocating for a more inclusive, patient-centered approach in clinical ethics and practice. (shrink)

Although medical confidentiality is widely recognized as an essential principle in the therapeutic relationship, its systematic and coherent practice has been an ethically challenging duty upon healthcare providers due to various concerns of clinical, moral, religious, social, ethical and legal natures. Medical confidentiality can be breached to protect the patient and/or others if maintaining confidentiality causes serious harm. Healthcare professionals may encounter complicated situations whereby the divulgence of a patient’s confidential information may pose a threat to one party whereas the (...) concealment of such information may cause harm to another. After deliberating on the Islamic concept of harm (ḍarar), this paper focuses on the dual duty and conflicts of interests faced by healthcare professionals in the practice of medical confidentiality. Referring to serious infectious diseases with a special mention of AIDS, this study also provides discourse on how healthcare professionals deal with difficult scenarios of conflicts of interests and ethical dilemmas. (shrink)

Civility is an essential feature of health care, as it is in so many other areas of human interaction. The article examines the meaning of civility, reviews its origins, and provides reasons for its moral significance in health care. It describes common types of uncivil behavior by health care professionals, patients, and visitors in hospitals and other health care settings, and it suggests strategies to prevent and respond to uncivil behavior, including institutional codes of conduct and disciplinary procedures. The article (...) concludes that uncivil behavior toward health care professionals, patients, and others subverts the moral goals of health care and is therefore unacceptable. Civility is a basic professional duty that health care professionals should embrace, model, and teach. (shrink)

Settling the debate over conscientious refusal (CR) in liberal democracies requires us to develop a conception of the healthcare provider’s moral role. Because CR claims and resulting policy changes take place in specific sociopolitical contexts with unique histories and diverse polities, the _method_ we use for deriving the healthcare norms should itself be a democratic, context-dependent inquiry. To this end, I begin by describing some prerequisites—which I call _publicity conditions_—for any democratic account of healthcare norms that conflict or jibe with (...) CR. Next, drawing on Ronald Dworkin’s jurisprudence and Tom Beauchamp & James Childress’s approach to bioethical reasoning, I briefly introduce one method for generating healthcare norms that is faithful to the publicity conditions and has potential to constructively, and democratically, derive important boundaries for CR. Finally, I argue that many critics of CR fail to similarly ground their accounts of healthcare norms in healthcare professionals’ sociopolitical contexts, often relying instead on their own interpretation of a generally stateable healthcare norm. This leads to their misconstruing both the value judgments on which their own approaches rest and the public, political values that are often invoked in favor of CR. (shrink)

Assisted Reproductive Technologies (ARTs) have been practiced in Islamic societies within married couples since their introduction. However, there are divergent views over the issue of third-party donation among Sunni and Shia scholars. This paper illustrates the different perspectives of Shia Muslims surrounding, sperm, egg, and embryo donation and ethical aspects thereof. The study reveals that there are different views regarding sperm, egg, and embryo donation among the Shia religious leaders around the world. Many Shia religious scholars, including the Iranian supreme (...) religious leader Ali Hussein Khamenei allow sperm, egg, and embryo donation with certain conditions. However, the conditions stipulated by Shia religious scholars contradict the ethical and legal practices of sperm, egg, and embryo donation. Regarding sperm and egg donation, they declared that the donor child would inherit from a third-party donor and the commissioning parents would be adoptive parents. Thus, according to them, donor anonymity is impossible. Moreover, the Iranian act on embryo donation did not stipulate the right and responsibilities of the donor child and recipient couples and did not clarify the nature and number of embryos that can be donated and implanted. The paper argues that the lack of laws and guidelines on sperm, egg, and embryo donation raises many ethical problems. Based only on religious rulings, third-party donation has been practiced without foreseeing the well-being and safety of donor children, donors, and recipient couples. (shrink)

The stipulation of living organ transplantation policy and practice in Bangladesh is family-oriented, with relatives being the only people legally eligible to donate organs. There have been very few transplantations of bone marrows, liver lobes, and kidneys from related-living donors in Bangladesh. The major question addressed in this study is why Bangladesh is not getting adequate organs for transplantation. In this study, I examin the stipulations of the policy and practice of living organ donation through the lens of 32 key (...) stakeholders including physicians and nurses, a health administrator, organ donors and recipients, and their family members, as they can shed light on the realities and problems of organ donation for transplantation in Bangladesh. My ethnography reveals that the family members are always encouraged to donate organs for transplantation, and saving the lives of relatives through organ donation is seen as a moral obligation. Many view saving the life of a relative by donating one’s organs as equivalent to saving one’s own life. An assessment of the dynamics of biomedicine, religion, and culture leads to the conclusion that the family-oriented organ donation policy and practice have been widely endorsed and accepted in Bangladesh, and Islamic ethical principles and collective family ethos undergird that policy and practice. However, the unavailability of medical resources, lack of post-operative coverage for organ donors, religious misconceptions and unawareness of the general public, and the absence of posthumously donated vital organs for transplantation are perceived to be the most common barriers to a successful living donor-recipient pair organ transplantation. By overcoming these obstacles, Bangladesh can develop a successful living donor-recipient pair organ transplantation program that will ensure improved healthcare outcomes, promote altruism and solidarity among Bangladeshi families, and protect the poor from having their organs sold to wealthy patients. (shrink)

John Davis (_New Methuselahs_: _The Ethics of Life_ _Extension_, The MIT Press, Cambridge, 2018) advances a novel ethical analysis of longevity science that employs a three-fold methodology of examining the impact of life extension technologies on three distinct groups: the “Haves”, the “Have-nots” and the “Will-nots”. In this essay, I critically examine the egalitarian analysis Davis deploys with respect to its ability to help us theorize about the moral significance of an applied gerontological intervention. Rather than focusing on futuristic scenarios (...) of radical life extension, I offer a rival egalitarian analysis that takes seriously (1) the health vulnerabilities of today’s aging populations, (2) the health inequalities of the “aging status quo” and, (3) the prospects for the fair diffusion of an aging intervention over the not-so-distant future. Despite my reservations about Davis’s focus on “life-extension” vs. increasing the human “healthspan”, I agree with his central conclusion that an aging intervention would be, on balance, a good thing and that we should fund such research aggressively. But, I make an even stronger case and conjecture that an intervention that slows down the rate of molecular and cellular decline from the inborn aging process will likely be one of the most important public health advancements of the twenty-first century. This is so because aging is the most prevalent risk factor for chronic disease, frailty and disability, and it is estimated that there will be over 2 billion persons age > 60 by the year 2050. (shrink)

Clinical ethics consultants (CECs) work in complex environments ripe with multiple types of expectations. Significantly, some are due to the perspectives of professional colleagues and the patients and families with whom CECs consult and concern how CECs can, do, or should function, thus adding to the moral complexity faced by CECs in those particular circumstances. We outline six such common expectations: Ethics Police, Ethics Equalizer, Ethics Superhero, Ethics Expediter, Ethics Healer or Ameliorator, and, finally, Ethics Expert. Framed by examples of (...) requests for ethics consultation that illustrate each kind, along with brief descriptions, we argue that while these expectations ought to be resisted for clear and practical reasons, they also create opportunities for CECs to articulate, educate, and ultimately be responsible to the professional demands of clinical ethics work. Recognizing, acknowledging, and at times resisting those expectations thus become key activities and responsibilities in the performance of ethics consultation. (shrink)

Leading paradigms of clinical ethics consultation closely follow a biomedical model of care. In this paper, we present a theoretical reflection on the underlying biomedical model of disease, how it shaped clinical practices and patterns of ethical deliberation within these practices, and the repercussions it has on clinical ethics consultations for patients with chronic illness. We contend that this model, despite its important contribution to capturing the ethical issues of day-to-day clinical ethics deliberation, might not be sufficient for patients presenting (...) with chronic illnesses and navigating as “lay experts” of their medical condition(s) through the health care system. Not fully considering the sources of personal knowledge and expertise may lead to epistemic injustice within an ethical deliberation logic narrowly relying on a biomedical model of disease. In caring “for” and collaboratively “with” this patient population, we answer the threat of epistemic injustice with epistemic modesty and humility. We will propose ideas about how clinical ethics could contribute to an expansion of the biomedical model of care, so that important aspects of chronic illness experience would flow into clinical-ethical decision-making. (shrink)

Debates concerning mask wearing continue in Japan. Here we critically examine the reasons for relaxing these regulations from a public health ethics perspective. We focus on three issues: government responsibility, political motivation, and cultural orientation, also discussing how these issues might have broader application in other parts of the world.

Jane Austen normally avoids discussing appearance throughout her works. Persuasion constitutes the exception to the rule, as the story focuses on the premature aging experienced by her protagonist, Anne Elliot, seemingly due to disappointed love. Much has been written about Anne’s “loss of bloom,” but never from the perspective of psychoneuroimmunology, the field that researches the interrelation between psychological processes and the nervous and immune systems. In this paper, we adopt a perspective of psychoneuroimmunology to argue that Austen established a (...) connection between psychological distress, specifically lovesickness, and the development of early senescence signs, and vice versa, since the recovery of love is associated with happiness and physical glow. From a gender perspective, we discuss how Austen brightly reflected these interrelationships through the story of Anne, when the latest psychoneuroimmunological research has actually shown that women age earlier than men as a consequence of psychological turmoil. (shrink)

Health disparities education is an integral and required part of medical professional training, and yet existing curricula often fail to effectively denaturalize injustice or empower learners to advocate for change. We discuss a novel collaborative intervention that weds the health humanities to the field of health equity. We draw from the health humanities an intentional focus retraining provider imaginations by centering patient narratives; from the field of health equity, we draw the linkage between stigmatized social identities and health disparities. We (...) describe a longitudinal health equity curriculum for the Hospice and Palliative Medicine fellowship in Memphis, Tennessee, to give trainees exposure to the concept of structural violence and how it affects clinical care. The curriculum was developed in partnership with humanities and social sciences faculty who staff a Health Equity academic program at a small liberal arts college in Memphis. This curriculum has been implemented for the past four years in support of 22 hospice and palliative medicine fellows. Group debriefs and a mixed methods survey have revealed widespread and lasting impact towards understanding health equity concepts, enhanced communication and treatment of patients, and empowerment to address the broader needs and policies affecting patients and the communities in which they live. Ultimately, we model an educational initiative that integrates equity across the full scope of healthcare practice and equips learners with skills for sustaining compassionate practices, focusing on equity-oriented, person-centered care across the full scope of healthcare practice. (shrink)

Graphic medicine, an interdisciplinary field situated at the crossroads of comics and healthcare, operates as a medium through which the intricate nature of experiences with illness can be articulated, challenging orthodox medical dogmatism in an engaging and accessible way. Combining the affordances of comics and the narrative power of storytelling, graphic medicine elucidates the socio-cultural stigmatization of dementia influenced by a multitude of discourses. Diverging from existing discourses that depict individuals with Alzheimer’s disease (AD) as zombies, brain-dead, or empty shells, (...) graphic memoirs reconstruct these reductive notions and represent them as imaginative, productive, and perceptive. Taking these cues, the present paper close reads some sections of Dana Walrath’s (2016) Aliceheimer’s: Alzheimer’s Through the Looking Glass in order to demonstrate how graphic medicine reconceptualizes the preeminent hallucinatory experiences of her AD-afflicted mother, Alice, as visions. Walrath deploys collage art to epitomize Alice’s ordeal with AD. In particular, Walrath deploys thought-provoking fragments from Lewis Caroll’s Alice in Wonderland, strategically to proximate Alice’s experiences with AD and tackle the problem of dementia and sociality. Additionally, the paper explores how the text fosters interdependence, respect, and trust to recognize and restore Alice’s personhood. The paper concludes by discussing how Aliceheimer’s operates as an alternative paradigm beyond the confines of biomedical and cultural models of dementia through the use of lexical puissance. (shrink)