Biomedical Ethics

BackgroundThe merits and drawbacks of moral relevance models of addiction have predominantly been discussed theoretically, without empirical evidence of these potential effects. This study develops and evaluates a novel survey measure for assessing moral evaluations of patient substance misuse (ME-PSM).MethodsThis measure was tested on 524 health professionals (i.e., physicians, nurses, and other health professionals) in California (n = 173), urban France (n = 102), and urban China (n = 249). Demographic factors associated with ME-PSM were investigated using analyses of variance (...) (ANOVAs) and t-tests, with results suggesting that ME-PSM is higher among younger health professionals, nurses (when compared with physicians and other health professionals), and Chinese health professionals (when compared with French and American health professionals).ResultsResults provide preliminary support for the psychometric quality of the survey measure introduced in this study, including the existence of a single latent structure and partial invariance of collected data across countries.ConclusionThe survey measure for ME-PSM which was developed and tested in the current study appears to hold potential utility for use as a measure of moral views of patient substance misuse. With development, this measure may be used to examine moral evaluations, both as factors of stigma and of other clinical factors associated with the treatment of patients with substance use disorders. (shrink)

Background: Severity plays an essential role in healthcare priority setting. Still, severity is an under-theorised concept. One controversy concerns whether severity should be risk- and/or time-sensitive. The aim of this article is to provide a normative analysis of this question. Methods: A reflective equilibrium approach is used, where judgements and arguments concerning severity in preventive situations are related to overall normative judgements and background theories in priority-setting, aiming for consistency. Analysis, discussion, and conclusions: There is an argument for taking the (...) risk of developing a condition into account, and we do this when we consider the risk of dying in the severity assessment. If severity is discounted according to risk, this will ‘dilute’ severity, depending on how well we are able to delineate the population, which is dependent on the current level of knowledge. This will potentially have a more far-reaching effect when considering primary prevention, potentially the de-prioritisation of effective preventive treatments in relation to acute, less-effective treatments. The risk arguments are dependent on which population is being assessed. If we focus on the whole population at risk, with T 0 as the relevant population, this supports the risk argument. If we instead focus on the population of as-yet (at T 0 ) unidentified individuals who will develop the condition at T 1, risk will become irrelevant, and severity will not be risk sensitive. The strongest argument for time-sensitive severity (or for discounting future severity) is the future development of technology. On a short timescale, this will differ between different diagnoses, supporting individualised discounting. On a large timescale, a more general discounting might be acceptable. However, we need to also consider the systemic effects of allowing severity to be risk- and time-sensitive. (shrink)

In recent years, the genetic testing and selection of IVF embryos, known as preimplantation genetic testing (PGT), has gained much traction in clinical assisted reproduction for preventing transmission of genetic defects. However, a more recent ethically and morally controversial development in PGT is its possible use in selecting IVF embryos for optimal intelligence quotient (IQ) and other non–disease-related socially desirable traits, such as tallness, fair complexion, athletic ability, and eye and hair colour, based on polygenic risk scores (PRS), in what (...) is referred to as PGT-P. Artificial intelligence (AI) and machine learning–based analysis of big data sets collated from genome sequencing of specific human ethnic populations can be used to estimate an individual embryo’s likelihood of developing such multifactorial traits by analysing the combination of specific genetic variants within its genome. Superficially, this technique appears compliant with Islamic principles and ethics. Because there is no modification of the human genome, there is no tampering with Allah’s creation (_taghyīr khalq Allah_). Nevertheless, a more critical analysis based on the five maxims of Islamic jurisprudence (_qawa'id fiqhiyyah_) that are often utilized in discourses on Islamic bioethics, namely _qaṣd_ (intention), _yaqın̄_ (certainty), _ḍarar_ (injury), _ḍarūra_ (necessity), and _`urf_ (custom), would instead reveal some major ethical and moral flaws of this new medical technology in the selection of non–disease-related socially desirable traits, and its non-compliance with the spirit and essence of Islamic law (shariah). Muslim scholars, jurists, doctors, and biomedical scientists should debate this further and issue a fatwa on this new medical technology platform. (shrink)

During the COVID-19 pandemic, focused protection strategies including selective lockdowns of the elderly were proposed as alternatives to general lockdowns. These selective restrictions would consist of isolating only those most at risk of COVID-19 hospitalization and subsequent use of healthcare resources. The proposal seems to have troubling implications, including the permissibility of selective lockdown on the basis of characteristics such as ethnicity, sex, disability, or BMI. Like age, these factors also correlated with an increased risk of hospitalization from COVID-19. In (...) this paper, we argue that age has meaningful differences as a morally relevant characteristic in the justification for selective restrictions of liberty. Thus, it might justify selective freedom restrictions in a way in which other factors might not. We offer four moral domains that separate age from other proxies: empiricism, operationality, discrimination, and disparity. (shrink)

Training residents to become humanistic physicians capable of empathy, compassionate communication, and holistic patient care is among our most important tasks as physician educators. Narrative medicine aims to foster those highly desirable characteristics, and previous studies have shown it to be successful in fostering self-reflection, emotional processing, and preventing burnout. We aimed to evaluate pediatric residents’ perceptions of a novel narrative medicine curriculum. After the initiation of a longitudinal narrative medicine curriculum, focus groups were conducted with residents who participated in (...) at least one narrative medicine session. The curriculum was viewed positively, and residents found the sessions to be helpful in developing empathy, offering a space for reflection, and introducing new perspectives. Challenges noted were perception of relevance, timing of sessions, and interpretation by non-native English-speaking residents. With attention to linguistics and thematic undertones, narrative medicine is a feasible, replicable, and accepted teaching modality for pediatric residents to foster empathy, process emotions, and participate in self-reflection. (shrink)

Respecting patient autonomy through the process of soliciting informed consent is a cornerstone of clinical ethics. In pediatrics, until a child becomes an adult or legally emancipated, that ethical tenet takes the form of respect for parental decision-making authority. In instances of respecting religious beliefs, doing so is not always apparent and sometimes the challenge lies not only in the healthcare provider’s familiarity of religious restrictions but also their knowledge of medical interventions themselves which might conflict with those restrictions. We (...) examine a case of a newborn receiving animal-derived surfactant, a common scenario in neonatology, and present considerations for providers to weigh when confronting when such an intervention might conflict with parent’s religious beliefs. We end with strategizing ways to address this issue as a medical community. (shrink)

Rising health insurance costs and the cost of living crisis are likely leading to an increase in unpaid health insurance bills in many countries. In Switzerland, a particularly drastic measure to sanction defaulting insurance payers is employed. Since 2012, Swiss cantons – who have to cover most of the bills of defaulting payers - are allowed by federal law to blacklist them and to restrict their access to medical care to emergencies.In our paper, we briefly describe blacklisting in the context (...) of the Swiss healthcare system before we examine the ethical issues involved in light of what is known about its social and health impacts. We found no evidence that blacklisting serves as an effective way of recovering unpaid health insurance contributions or of strengthening solidarity within the health insurance system. Furthermore, the ambiguous definitions of what constitutes an emergency treatment and the incompatibility of the denial of medical care with the obligation to provide professional assistance complicate the implementation of blacklists and expose care providers to enormous pressure.Therefore, we conclude that blacklists and the (partial) denial of medical care not only pose profound ethical problems but are also unsuitable for fulfilling the purpose for which they were introduced. (shrink)

The informed consent is an ethical and legal requirement for potential participants to enroll in a study. There is ample of evidence that understanding consent information and enrollment is challenging for participants in clinical trials. On the other hand, the reasoning process behind decision-making in HIV clinical trials remains mostly unexplored. This study aims to examine the decision-making process of people living with HIV currently participating in antiretroviral clinical trials and their understanding of informed consent. We conducted a qualitative socio-constructivist (...) study using semi-structured interviews. Eleven participants were selected by purposive sampling in Argentina until data saturation was reached. A content analysis was performed. The findings highlight the fact that some participants decided to enroll on the spot, while others made the decision a few days later. In all cases, the decision was based on different aspects of trust (in doctors, in the clinical research site, in the clinical trials system) but also on emotions associated with HIV and/or treatment. Moreover, while people living with HIV felt truly informed after the consent dialogue with a researcher, consent forms were unintelligible and unfriendly. The immediacy of patient decision-making has rarely been described before. Enrollment in an HIV clinical trial is mainly a trust-based decision but this does not contradict the ethical values of autonomy, voluntariness, non-manipulation, and non‐exploitation. Thus, trust is a key issue to be included in reshaping professional practices to ensure the integrity of the informed consent process. (shrink)

The seriousness of the COVID-19 pandemic requires a look into the implementation of drug registration rules for COVID-19 vaccines. Amidst the surrounding exigencies, vaccines being a biological product, require comprehensive and continuing pre and post registration rules to ensure their safety and efficacy. The study focuses on Malaysia which has rules on drug registration that have been successfully applied to vaccines. The study shows that the rules have been tailor-made to emergency situations. At the moment, special rules have been introduced (...) including to allow use of COVID-19 vaccines as unregistered product. Recognition of COVID-19 Vaccines Global Access (COVAX) facility and requirement for government sale only, are among the safety valves. The study shows that these however are temporary measures against the backdrops of possible entry of private players in the vaccination process. Therefore, regulatory responses to intellectual property (IP) related conditions underlying drug registration, and measures to ensure risk management involved in vaccine production, approval and administration are needed in the progressive rules pending further development of research in the area. (shrink)

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

Some physicians refuse to perform life-sustaining interventions, such as tracheostomy, on patients who are very likely to remain permanently unconscious. To explain their refusal, these clinicians often invoke the language of “futility”, but this can be inaccurate and can mask problematic forms of clinical power. This paper explores whether such refusals should instead be framed as conscientious objections. We contend that the refusal to provide interventions for patients very likely to remain permanently unconscious meets widely recognized ethical standards for the (...) exercise of conscience. We conclude that conscientious objection to tracheostomy and other life-sustaining interventions on such patients can be ethical because it does not necessarily constitute a form of invidious discrimination. Furthermore, when a physician frames their refusal as conscientious objection, it makes transparent the value-laden nature of their objection and can better facilitate patient access to the requested treatment. (shrink)

Contemporary medicine views health as the individual’s physical, mental, and social well-being. Oral health plays a crucial role in one’s well-being, as the oral cavity and its surrounding regions execute essential functions in verbal and nonverbal communication, sensing, digestion, and significantly contribute to aesthetic appearance. The multifaceted nature of the notion of oral health, as well as the patient’s needs and autonomous will result in various treatment options for the same oral state, favouring often contrasting ethical values and different aspects (...) of oral health. The objective of this article is to suggest alternative treatment strategies in dentistry with respect to the following factors: extent of rehabilitation, preserving one’s anatomical structures, aesthetic outcome, number of sessions, patient autonomy. Additionally, this article describes the suggested treatment strategies in an ethical context and determines the conditions of their employment. The suggested treatment strategies are divided in two categories, extensive treatment strategies focusing on the patient’s entire craniofacial complex, while specific treatment strategies focus on specific paramount issues. (shrink)

Recently in Israel, a woman was mistakenly implanted with an embryo that is genetically related to another couple. Unfortunately, this case is not an isolated occurrence, as other cases of embryo mix-ups have been reported in several countries, including the USA, China, the UK and various other countries within the European Union. Cases of mixed-up embryos are ethically and legally complex: the woman who carried the pregnancy and the woman who is genetically related to the resulting child—both of whom endured (...) emotionally and physically demanding infertility treatments—along with their partners, may be unwilling to relinquish parental rights over the child.This article explores four possible approaches, found in numerous common law jurisdictions, which can be used to address cases involving embryo mix-ups. Our analysis reveals several avenues through which legal parentage can be established. It can be done through gestation and the marital presumption, genetic connections, by adhering to the principle of the best interests of the child, or by recognising multiple individuals as legal parents. We review the advantages and disadvantages of each approach, but we have one clear recommendation: resolving embryo mix-up cases should be done proactively through the establishment of legislation and guidelines, rather than relying on post hoc individual court decisions. Such legislation and guidelines should guarantee the consistency of values throughout diverse reproductive contexts and mandate that fertility clinics and medical professionals provide individuals with comprehensive information regarding the potential risks associated with assisted reproductive treatments. (shrink)

Background: Clinical ethics support instruments aim to support healthcare professionals in dealing with moral challenges in clinical practice. CURA is a relatively new instrument tailored to the wishes and needs of healthcare professionals in palliative care, especially nurses. It aims to foster their moral resilience and moral competences. Aim: To investigate the effects of using CURA on healthcare professionals regarding their Moral Resilience and Moral Competences. Design: Single group pre-/post-test design with two questionnaires. Methods: Questionnaires used were the Rushton Moral (...) Resilience Scale measuring Moral Resilience and the Euro-MCD, measuring Moral Competences. Respondents mainly consisted of nurses and nurse assistants who used CURA in daily practice. Forty-seven respondents contributed to both pre- and post-test with 18 months between both tests. Analysis was done using descriptive statistics and Wilcoxon signed rank tests. This study followed the SQUIRE checklist. Ethical considerations: This study was approved by the Institutional Review Board of Amsterdam UMC. Informed consent was obtained from all respondents. Results: The total Moral Resilience score and the scores of two subscales of the RMRS, that is, Responses to Moral Adversity and Relational Integrity, increased significantly. All subscales of the Euro-MCD increased significantly at posttest. Using CURA more often did not lead to significant higher scores on most (sub) scales. Conclusion: This study indicates that CURA can be used to foster moral resilience and moral competences of healthcare professionals. CURA therefore is a promising instrument to support healthcare professionals in dealing with moral challenges in everyday practice. (shrink)

Imagine a person with a compulsive illness that leads her to frequently wash her hands. She will scrub her hands under all sorts of bizarre conditions, such as seeing a garbage truck drive down the road or hearing the word ‘trash’ on television. Sometimes her hands do need to be cleaned but this is usually a fortunate coincidence. This person does not have control over her behavior because she cannot help herself from washing her hands (unless dire consequences were to (...) follow, such as the threat of imminent death, poisonous gassing of her children, and so on). Because she lacks control over her behavior, most people are inclined to think that she is not responsible for her compulsive washing or any harm that comes of it. We might even think that it is inappropriate to blame her if she cannot stop washing when she ought to. Importantly, the impact of her illness extends beyond the issues of responsibility and blame since it impacts the degree to which she is autonomous. After all, if she experiences extreme discomfort or alienation from her washing then it seems reasonable to suppose that her compulsive behavior does not truly represent her (or her deeper self). -/- This is the story that many philosophers of agency who have written about obsessive-compulsive disorder (OCD) tell. These theorists tend to depict those with OCD as lacking control over their behavior to such a degree that their moral responsibility and capacity for self-governance are impaired or obviated. So understood, people with OCD are of interest to philosophers of agency only insofar as they provide a colorful counterexample to one theory or another. But this story is false. In fact, it is really a caricature of the disorder that not only obscures its nature but, and more importantly, obscures the serious implications that OCD (properly understood) has for our understanding of core agential concepts, such as moral responsibility or identification with an attitude. In my dissertation I both correct this long-standing and entrenched misunderstanding of OCD in philosophical literature and work out the implications it carries for our understanding of human agency. -/- On my approach, an accurate understanding of OCD requires examining leading psychiatric literature on the disorder as well as consulting the words and experiences of people living with OCD. Although the disorder is formally defined in terms of experiencing thoughts, images, or impulses (obsessions) alongside rituals the person feels pressure to complete (compulsions), the thematic presentation of these symptoms can vary widely. For example, in Story of a Soul, St. Therese of Liseaux describes “a terrible disease of the scruples” that filled her with seemingly sinful thoughts, driving her to repeatedly pray and visit confession with little relief. In contrast, J. J. Keeler describes painful obsessions about unknowingly causing a fatal traffic collision, leading to hours spent retracing her route, scouring the news for reports of a hit-and-run, and so on. Yet despite this diversity, nearly all manifestations of OCD involve dysfunctional beliefs. These beliefs typically over-represent the chance of harm associated with an action and the person’s responsibility for preventing or causing harm. Consequently, they make those with OCD more likely to experience exaggeration of certain features of their environment or stimuli, skewing and disrupting their thinking and deliberation, leading them to engage in, as I argue, voluntary and intentional compulsive rituals aimed at averting harm and relieving anxiety. St. Therese’s sinful thoughts involve her dysfunctional beliefs about perfection, about what harms or helps her relationship with God, and about her responsibility for having those thoughts. She is driven to voluntarily pray as an attempt to relieve her anxiety and to make good with God. By comparison, Keeler obsesses that she may have caused or will cause a death and so checks her behavior on the road constantly and reduces ‘dangerous activities’ (such as driving on highways). In these memoirs we see that the pattern of beliefs at work in OCD can lead agents like Therese and Keeler to interpret certain acts as courting disaster when they are not especially risky, or certain thoughts and ideas as blasphemous when they are not representative of who that person is. -/- As noted, when philosophers discuss OCD in the context of moral responsibility, their depictions tend to stress a lack of control over one’s behavior. In reason-responsive theories, the person with OCD is thought to be unable to properly react to sufficient reasons for action even if she is able to recognize that they exist and have bearing. This is termed a failure of reason-reactivity. This is how one theorist, Michael Mckenna, frames his example of Handy the compulsive handwasher. Handy is a purported counterexample to Fischer & Ravizza’s reason-responsive theory (semicompatibilism) because Handy can recognize and react to at least one sufficient reason to refrain from washing his hands (despite ostensibly being a compelled agent). McKenna caricatures OCD by under-describing Handy’s mental states and over-emphasizing his limited ability to abstain from washing his hands in the presence of powerful countervailing considerations (e.g., to save the life of his child). McKenna’s example of Handy chiefly ignores the robust cognitive features of the disorder described above, specifically the agent’s beliefs about her own obsessions and compulsions and how they relate to the world around her. In contrast to this depiction of OCD, I argue that people with OCD are overly receptive to apparent reasons for action, seeing reasons where there are none or distorting the weight certain reasons have in deliberation. Furthermore, an accurate picture of OCD reveals that most people with the disorder do possess guidance control and are thus morally responsible. If we wish to argue that these agents are blameless, we must refine our understanding of what it means to ‘resist’ a compulsion. Instead, we must understand the difficulty associated with resisting the dysfunctional beliefs at the heart of OCD. -/- The fact that people with OCD are overly receptive to apparent reasons for action has implications not just for responsibility and freedom but also for other core concepts in agency like identification and autonomy. Identification generally refers to attitudes that ‘stand for’ an agent and so have the authority to represent her. Some philosophers argue that internal attitudes (those the agent identifies with) must be explicitly endorsed by the agent in some kind of reflective process, while others argue that more fundamental attitudes (such as our cares) are internal. Stretching back to Frankfurt’s first description of identification, obsessions have long been considered external to the agent, usually because obsessive thoughts are experienced as unwanted or upsetting. For example, Keeler’s thought that she has caused a fatal hit-and-run is distressing because the thought of having harmed someone so much is unbearable. Similarly, the rituals Keeler engages in, like checking the news for accident reports or searching the exterior of her car for blood, are upsetting to her even though they are aimed at relieving her distress. However, the same features of the disorder that lead people with OCD to become overwhelmed by reasons also appear to lead some to develop caring-like behaviors. For example, when Keeler experiences obsessions about the risk of hitting someone with her car, she becomes particularly attuned to situations in which she perceives her behavior as a threat to others on the road. In response Keeler takes serious steps to change her driving habits, including driving on surface roads rather than highways or traveling well under the speed limit. This behavior closely tracks the way agents behave when they care about something (whether it is a person, a value, an outcome). This means that, contrary to the way philosophers have hitherto understood clinical obsessions, obsessions can be internal to the agent and speak for her in a meaningful way. As I argue this is a feature and not a bug. In fact, it is a very significant, and from a therapeutic point of view, very worrying feature. This is because those cases of OCD that most resemble caring are also those in which the person lacks significant insight into her own disorder. The disorder is hidden from her own insight precisely because it is expressed in what she most cares about. Such individuals are often the most ill in terms of symptom severity and recovery trajectory. Reframing this behavior as dysfunctional caring explains why these obsessions take on ever greater significance to the agent and take up increasing space in her deliberative horizon. This finding, in turn, may indicate that therapies aimed at externalizing obsessions and removing them from one’s deliberative agenda could wear away at otherwise recalcitrant obsessions and compulsive rituals. -/- Mischaracterizations of OCD in philosophy of agency have driven a number of problematic depictions of the disorder, and the arguments built around such mischaracterizations are necessarily deficient. Depicting OCD as largely about control has yoked our discussions of the disorder’s symptoms to older, inaccurate conceptions of psychological compulsion as a kind of force. This has been to our theoretical detriment since it has concealed the degree to which compulsion in OCD is both voluntary and purposeful as well as driven significantly by dysfunctional beliefs. Recognizing these features of OCD and their impact on agency has significant implications for the way we theorize about concepts like responsibility and identification. For example, if people with OCD do possess guidance control then we must reassess our intuition that they are excused from blame, or else modify our understanding of what the relevant excusing conditions are. Similarly, understanding that seriously ill people with OCD may display caring-like behavior may inform our understanding of internality’s role in agency as well as potential treatment methods. (shrink)

A large proportion of hospital inpatients are affected by cognitive impairment, posing challenges in the provision of their care in busy, fast-paced acute wards. Signs and symbols, known as visual identifiers, are employed in many U.K. hospitals with the intention of helping healthcare professionals identify and respond to the needs of these patients. Although widely considered useful, these tools are used inconsistently, have not been subject to full evaluation, and attract criticism for acting as a shorthand for a routinized response. (...) In order for visual identifiers to be used effectively in acute care settings, thorough consideration must be given to the ethical and legal issues that are engaged in this context, and their potential benefits and harms must be weighed and balanced. This paper proposes a set of legal and ethical principles that can be used to guide the implementation of visual identifiers. Together, these principles provide a framework applicable in the design and implementation phases to systematically identify relevant considerations arising from the use of these tools. We outline some tensions that arise between principles and conclude that selecting a preferred moral framework could help to guide decision-making, as does clarity around the purpose and objectives of the identifier. (shrink)

Seasonal influenza poses a significant public health risk in many countries worldwide. Lower immunity and less influenza virus circulating during the pandemic has resulted in a significant increase in cases since the lifting of COVID-19 restrictions in 2022. The seasonal influenza vaccine offers effective protection and is safe for use in large numbers of the population. This article asserts that a moral obligation to vaccinate against influenza can be understood as an Institutional Duty of Rescue. The traditional understanding of the (...) Duty of Rescue encounters issues with force and scope, making it difficult to apply to rescue cases in general, as well as being overdemanding for the individual agent. An Institutional view of the Duty of Rescue addresses these difficulties, looks at the wider context of rescue and leaves room for discussion on collective, preventative rescue measures. This makes the concept well suited to supporting a moral obligation to vaccinate against influenza as part of a collective effort on the part of institutional organisations. (shrink)

Many state laws specify procedures for determining surrogate or proxy decision-makers for end-of-life care in the absence of an advance directive, living will, or other designation. Some laws also set forth criteria that the decision-maker must follow when making medical decisions for an incapacitated patient and determining whether to withdraw life-sustaining treatment. This article provides analysis of a medical ethics case on the question of how to address family allegations that the proxy decision-maker suffers from dementia and is unable to (...) make decisions for the patient. Cases such as this involve interwoven legal and ethical considerations including: how to address concerns that the proxy is making questionable or unreasonable decisions, how to evaluate the proxy's decisional capacity, strategies for enhancing communication, and standards for removing a proxy. This article suggests that “surrogacy ladders” in state law serve not only as a procedural mechanism, but also protect important ethical values such as tiers of moral authority for decision-making, relational autonomy, and privacy. (shrink)

In the USA, one child in 285 children is diagnosed with cancer every year, but thanks to improvements in medicine, the survival rate has reached 80%. However, cancer treatments, such as chemotherapy and radiation, are likely to affect their fertility later in life, limiting their ability to conceive. To reduce this risk, ovarian tissue cryopreservation is a surgical procedure that allows the ovarian tissue to be retrieved and cryopreserved in order to be reimplanted back into the abdomen and restore ovarian (...) function in children who become infertile due to gonadotoxic treatments. A case study published in 2014 offered recommendations to help assess whether such a procedure should be offered to female patients who have not yet entered puberty. This paper will investigate whether, in light of more recent and updated literature, their recommendations may need to be revised. (shrink)

En este ensayo nos proponemos realizar algunas consideraciones argumentativas breves sobre la ética en investigaciones con seres humanos vulnerables. Para ello, examinaremos el conocido caso de Tuskegee (Alabama), ocurrido entre los años 1932-1972, en el que 600 personas afroamericanas fueron inoculadas con sífilis sin su consentimiento. Luego, desde una postura crítica, abordaremos el caso desde tres perspectivas bioéticas. En primer lugar, lo analizaremos desde el plano jurídico-normativo, luego desde el principialismo formulado por Tom Beauchamp y James Childress, y finalmente, desde (...) el enfoque conceptual de la “vulnerabilidad”, referido a las poblaciones participantes en las investigaciones bioéticas. En efecto, nos centraremos en los miramientos que estos enfoques plantean de forma expresa, para realizar un análisis reflexivo sobre el necesario aspecto ético, requerido en el seno de toda investigación bioética con personas vulnerables. (shrink)

En este artículo se plantean las bases del marco ético-normativo que intervienen en la atención sanitaria de las mujeres en general, y de las mujeres mapuce, en particular. Posteriormente, se realiza un abordaje de las mujeres indígenas analizando su situación concreta, a partir de considerar de manera crítica la confluencia intersectorial de distintos sistemas opresivos que articulan las relaciones de género, clase y etnia. Para ello, el planteo se centrará en el estudio de esta problemática desde la perspectiva feminista latinoamericana, (...) que será, seguidamente, retomada y contrastada desde la voz propia de mujeres que se autoidentifican como mapuce. El objetivo del artículo se centra en poner de manifiesto las múltiples dificultades que presentan las mujeres indígenas en el acceso a la salud, con el propósito de justificar la necesidad de articular políticas públicas que promuevan la democratización del acceso sanitario, en tanto derecho humano. Para ello, realizaremos un abordaje teórico-normativo que ponga en evidencia las responsabilidades éticas y políticas del Estado, como ente garante del acceso a la salud de sus ciudadanos, en particular de los más vulnerados, como lo son las mujeres de comunidades indígenas en nuestro país. (shrink)

During the last decades, shared decision making (SDM) has become a very popular model for the physician-patient relationship. SDM can refer to a process (making a decision in a shared way) and a product (making a shared decision). In the literature, by far most attention is devoted to the process. In this paper, I investigate the product, wondering what is involved by a medical decision being shared. I argue that the degree to which a decision to implement a medical alternative (...) is shared should be determined by taking into account six considerations: (i) how the physician and the patient rank that alternative, (ii) the individual preference scores the physician and the patient (would) assign to that alternative, (iii) the similarity of the preference scores, (iv) the similarity of the rankings, (v) the total concession size, and (vi) the similarity of the concession sizes. I explain why shared medical decisions are valuable, and sketch implications of the analysis for the physician-patient relationship. (shrink)

Artificial intelligence (AI) will drastically change the healthcare system. Radiology is one speciality that is most affected as AI algorithms are increasingly used in diagnostic imaging. AI‐enhanced health technologies will, inter alia, increase workflow efficiency, improve diagnostic accuracy, reduce healthcare‐related costs, and help alleviate medical personnel shortages in under‐resourced settings. However, the development of AI‐enhanced technologies in healthcare is fraught with legal, ethical, and human rights concerns. Currently, the use of AI in South African healthcare is not governed by sui (...) generis legislation or ethical guidance focused exclusively and specifically on AI, although various provisions and principles from law and ethics find application. This article outlines these normative principles and explains their relationship with the extant legal obligations and regulatory framework as applied to the use of AI in radiology services in South Africa. The article concludes with three key recommendations for radiology practitioners using AI in South Africa. These are the need for: vigilant monitoring of AI use in practice, reforms to the liability framework, and appropriate guidance from local regulators and the Health Professions Council of South Africa on the ethical use of AI. (shrink)

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

Harms and risks to groups and third-parties can be significant in the context of research, particularly in data-centric studies involving genomic, artificial intelligence, and/or machine learning technologies. This article explores whether and how United States federal regulations should be adapted to better align with current ethical thinking and protect group interests. Three aspects of the Common Rule deserve attention and reconsideration with respect to group interests: institutional review board (IRB) assessment of the risks/benefits of research; disclosure requirements in the informed (...) consent process; and criteria for waivers of informed consent. In accordance with respect for persons and communities, investigators and IRBs should systematically consider potential group harm when designing and reviewing protocols, respectively. Research participants should be informed about any potential group harm in the consent process. We call for additional public discussion, empirical research, and normative analysis on these issues to determine the right regulatory and policy path forward. (shrink)

The medical profession contains five “spheres of morality”: clinical care, clinical research, scientific knowledge, population health, and the market. These distinct sets of normative commitments require physicians to act in different ways depending on the ends of the activity in question. For example, a physician-scientist emphasizes patients’ well-being in clinic, prioritizes the scientific method in lab, and seeks to maximize shareholder returns as a board member of a pharmaceutical firm. Physicians increasingly occupy multiple roles in healthcare and move between them (...) frequently, creating the possibility of conflict between the ethical obligations of their various roles. This paper examines the entire moral landscape of medicine through the lens of role morality. It develops a novel framework that helps physicians recognize how their moral commitments depend on the nature and context of the situation, clarifies ethical conflicts that physicians face, and concludes with ideas for resolving these conflicts. (shrink)

In this paper, I take seriously calls for public engagement in human genome editing decision-making by endorsing the convening of a “Citizens Jury” in conjunction with the International Commission on the Clinical Use of Human Germline Genome Editing’s next summit scheduled for March 6–8, 2023. This institutional modification promises a more inclusive, deliberative, and impactful form of engagement than standard bioethics engagement opportunities, such as comment periods, by serving both normative and political purposes in the quest to offer moral guidance (...) on gene editing. In examining evidence from the Australian Citizens’ Jury on Genome Editing convened in 2021, I argue that Citizens’ Juries should work in tandem with governing institutions to preserve the role of expertise while ensuring that the diverse views of the public are incorporated into their final reports as well. First, early inclusivity allows “the people” to hold agenda setting power through helping to set resource priorities. This also makes a downstream deliberative event, such as the called for Global Citizens’ Assembly, both more likely to occur and more influential on policy. Second, Jury’s diverse composition promises substantive contributions to the Commission’s work. Third, Citizens’ Juries could help to cultivate the Commission’s trustworthiness. (shrink)

Over 200 health journals call on the United Nations, political leaders, and health professionals to recognise that climate change and biodiversity loss are one indivisible crisis and must be tackle...

Since physicians began to formally professionalize in the 19th century, we have sought to set ourselves apart from other occupations through the adoption (and variable enforcement) of codes of ethi...

Deliberative democrats would appear to face something of a dilemma: They want to secure robust citizen input into the policy process, especially on the big, controversial issues that affect people’...

I want to begin this brief response by thanking all of those who took the time to read and reflect upon this piece. There were many thoughtful and thought provoking responses and I have learned fro...

I greatly appreciate the open peer commentary authors’ thoughtful engagement with my proposal to include a Citizens’ Jury (CJ) at the level of the International Commission when exploring ethical re...

In a recent paper, Doernberg and Truog identify that physicians must routinely navigate a set of distinct “moral spheres”—clinical care, research, population health and the market.1 While the conce...

With their target article, “Spheres of Morality…,” Dornberg and Truog (2023) have given us a careful analytic framework for distinguishing moral concerns among different domains involved in medical...

Scheinerman (2023) proposes that at the Human Genome Editing Initiative international summit (held in March 2023) there should have been a parallel, separate Citizens’ Jury, and that the Human Geno...

The article by Doernberg and Truog (2023) suggests that five different medical spheres have five distinctive sets of moral norms based on the ends of those spheres, implying that different roles in...

In their compelling argument for the use of role morality as a means to aid physicians in navigating potential conflicts of interest, Doernberg and Truog (2023) posit the existence of distinct sphe...

From their interpretation of the Australian Citizens’ Jury on genome editing, Scheinerman (2023) concludes that inclusive and diverse deliberative processes of public engagement have salient benefi...

Why should we obey the rules that constitute a code of conduct? If a rule is justified by conclusive moral reasons, then those reasons are sufficient, from a rational point of view (rather than, sa...

I heartily agree with Sam Doernberg and Robert Troug’s claims that there are important differences between “general morality” and medical ethics, and that in some instances they issue contradictory...

Pro Doernberg and Truog (2023), we recognize and acknowledge five spheres of morality in medicine. We posit that these spheres represent domains of practical engagement, which, as the authors note,...

Doernberg and Truog (2023) claim that physicians increasingly serve in multiple roles outside the traditional clinical encounter, roles with various and divergent aims that nonetheless “invoke the...

In their target article, Doernberg and Truog (2023) correctly recognize that the doctor-patient relationship is considered a “fiduciary” relationship (i.e., other-regarding rather than self-interes...

In depicting five “spheres of morality” occupied by physicians Doernberg and Troug provide an impressive analysis on physicians’ various commitments and role conflicts which are excellently illustr...

This commentary has three parts. The first one is based on fundamental questions in the field of philosophy of medicine, linked to relevant epistemological and ethical considerations in the analysi...

Doernberg and Truog (2023) provide an insightful analysis of the role of medical professionals in what they call spheres of morality. While their framework is useful for inquiring into the moral de...

Scheinerman (2023) proposes a Citizen’s Jury on human germline genome editing (HGGE) to promote more inclusive public engagement, agenda setting and governance. She argues these juries should work...

Doernberg and Truog (2023) propose a complex scheme for identifying the ethical issues at stake in various medical situations.The complexity of their scheme illustrates the difficulties that arise...

Doernberg and Truog (2023) present a thoughtful analysis of the ethical tensions that arise from physicians increasingly occupying “multiple roles in healthcare”1 I take no issue with the classific...