Consider four elite female runners who trained hard for a 1500‐meter race. Runner 1 took extra‐strength aspirin before the race. Runner 2 has a genetic condition that results in greater levels of testosterone in her body than the typical range for a woman. Runner 3 has been on a carefully scheduled regimen of the hormone erythropoietin (EPO), which has increased her red blood cell count. Runner 4 has a team of diet, sleep, and exercise experts who ensured that she coordinated (...) the exactly right balance of carbs and protein with her rest and workouts. Which of them cheated? Thomas Murray's Good Sport: Why Our Games Matter—and How Doping Undermines Them does not answer this question, but it provides tools to figure it out, and it argues that trying to answer is important. (shrink)

To most people outside the relevant laboratories and operating rooms, xenotransplants and artificial organ transplants are bizarre. While the bizarre scares many away and angers others, Lesley A. Sharp approached it and asked, What behooves medical research to take organs out of pigs and primates and design organs out of metal and plastic and use them to replace failing organs in humans? Sharp attended years of conferences, visited countless hospitals and laboratories, and interviewed engineers, scientists, and surgeons to explore the (...) choices and implicit values of decision‐makers in alternative transplantation. The Transplant Imaginary: Mechanical Hearts, Animal Parts, and Moral Thinking in Highly Experimental Science is a rich resource for philosophers who wish to expound on the morality of implanting nonhuman animal and mechanical organs into humans. The author's thorough ethnographic survey of xeno‐ and biomechanical transplant research leads well into two lines of questioning. First, how ethical is the pursuit of alternative transplant? Second, what is essential for transplant researchers to do their jobs ethically? (shrink)

Over 115 000 people are waiting for life-saving organ transplants, of whom a small fraction will receive transplants and many others will die while waiting. Existing efforts to expand the number of available organs, including increasing the number of registered donors and procuring organs in uncontrolled environments, are crucial but unlikely to address the shortage in the near future and will not improve donor/recipient compatibility or organ quality. If successful, organ bioengineering can solve the shortage and improve functional outcomes. Studying (...) manufactured organs in animal models has produced valuable data, but is not sufficient to understand viability in humans. Before risking manufactured organ experimentation in living humans, study of bioengineered organs in recently deceased humans would facilitate evaluation of the function of engineered tissues and the complex interactions between the host and the transplanted tissue. Although such studies do not pose risk to human subjects, they pose unique ethical challenges concerning the previous wishes of the deceased, rights of surviving family members, effective operation and fair distribution of medical services, and public transparency. This article investigates the ethical, legal and social considerations in performing engineered organ research on the recently deceased. (shrink)

Sports are more than just "games". They can unite countries, start wars, and revolutionize views on race, class, and gender. Through works from philosophy, sociology, medicine, and law, this collection explores intersections of sports and ethics, and identifies the immense role of sports in shaping and reflecting social values.

Research involving recently deceased humans that are physiologically maintained following declaration of death by neurologic criteria—or ‘research involving the recently deceased’—can fill a translational research gap while reducing harm to animals and living human subjects. It also creates new challenges for honouring the donor’s legacy, respecting the rights of donor loved ones, resource allocation and public health. As this research model gains traction, new empirical ethics questions must be answered to preserve public trust in all forms of tissue donation (...) and in the practice of medicine while respecting the legacy of the deceased and the rights of donor loved ones. This article suggests several topics for immediate investigation to understand the attitudes and experiences of researchers, clinical collaborators, donor loved ones and the public to ensure research involving the recently deceased advances ethically. (shrink)

The purpose of this article is to examine stakeholder identification and prioritization by managers using the power, legitimacy, and urgency framework of Mitchell et al. (Academy of Management Review 22, 853–886; 1997). We use a multi-method, comparative case study of two large-scale sporting event organizing committees, with a particular focus on interviews with managers at three hierarchical levels. We support the positive relationship between number of stakeholder attributes and perceived stakeholder salience. Managers’ hierarchical level and role have direct and moderating (...) effects on stakeholder identification and perceived salience. We also found that most stakeholders were definitive, dominant, or dormant types – the other five types were rare. Power has the most important effect on salience, followed by urgency and legitimacy. Based on our case study, we offer several ways to advance the theory of stakeholder identification and salience. (shrink)

It is a consequence of Quine’s confirmation holism that the logical laws are in principle revisable. Some have worried this is at odds with another dictum in Quine, viz., that any translation which construes speakers as systematically illogical is ipso facto inadequate. In this paper, I try to formulate exactly what the problem is here, and offer a solution to it by (1) disambiguating the term ‘logic,’ and (2) appealing to a Quinean understanding of ‘necessity.’ The result is that the (...) different theses in Quine’s philosophy of logic are to be situated within different contexts of inquiry. (shrink)

We report on the mechanisation of (preference-based) conditional normative reasoning. Our focus is on Åqvist's system E for conditional obligation, and its extensions. Our mechanisation is achieved via a shallow semantical embedding in Isabelle/HOL. We consider two possible uses of the framework. The first one is as a tool for meta-reasoning about the considered logic. We employ it for the automated verification of deontic correspondences (broadly conceived) and related matters, analogous to what has been previously achieved for the modal logic (...) cube. The equivalence is automatically verified in one direction, leading from the property to the axiom. The second use is as a tool for assessing ethical arguments. We provide a computer encoding of a well-known paradox (or impossibility theorem) in population ethics, Parfit's repugnant conclusion. While some have proposed overcoming the impossibility theorem by abandoning the presupposed transitivity of ‘better than’, our formalisation unveils a less extreme approach, suggesting among other things the option of weakening transitivity suitably rather than discarding it entirely. Whether the presented encoding increases or decreases the attractiveness and persuasiveness of the repugnant conclusion is a question we would like to pass on to philosophy and ethics. (shrink)

As of this writing, twenty‐one states have passed laws barring transgender youth‐athletes from competing on public‐school sports teams in accordance with their gender identity. Proponents of these regulations claim that transgender females in particular have inherent physiological advantages that threaten a “level playing field” for their cisgender competitors. Existing evidence is limited but does not support these restrictions. Gathering more robust data will require allowing transgender youth to compete (rather than preemptively barring them), but even if trans females are shown (...) to retain some advantage, this would not have greater moral significance than the many other “fair” physical and economic advantages found across sports. These regulations deprive transgender youth, an exceptionally vulnerable population, from the vast physical, mental, and social benefits of sports. While we advocate for transgender inclusion under our current, gender‐segregated model of sport, we propose changes to the overarching structure that would promote a more inclusive and fairer athletic environment. (shrink)

Abstract:Gene editors such as CRISPR could be used to create stronger, faster, or more resilient nonhuman animals. This is of keen interest to people who breed, train, race, and profit off the millions of animals used in sport that contribute billions of dollars to legal and illegal economies across the globe. People have tried for millennia to perfect sport animals; CRISPR proposes to do in one generation what might have taken decades previously. Moreover, gene editing may facilitate enhancing animals’ capacities (...) beyond their typical limits. This paper describes the state of animal use and engineering for sport, examines the moral status of animals, and analyzes current and future ethical issues at the intersection of animal use, gene editing, and sports. We argue that animal sport enthusiasts and animal welfarists alike should be concerned about the inevitable use of CRISPR in sport animals. Though in principle CRISPR could be used to improve sport animals’ well-being, we think it is unlikely in practice to do so. (shrink)

This collection of essays emphasizes society s increasingly responsible engagement with ethical challenges in emerging medical technology. Expansion of technological capacity and attention to patient safety have long been integral to improving healthcare delivery but only relatively recently have concepts like respect, distributive justice, privacy, and autonomy gained some power to shape the development, use, and refinement of medical tools and techniques. Medical ethics goes beyond making better medicine to thinking about how to make the field of medicine better. (...) These essays showcase several ways in which modern ethical thinking is improving safety, efficacy and efficiency of medical technology, increasing access to medical care, and empowering patients to choose care that comports with their desires and beliefs. Included are complimentary ethical approaches as well as compelling counter-arguments. Together, the articles demonstrate how improving the quality of medical technology relies on every stakeholder -- not just medical researchers and scientists -- to assess each given technology s strengths and pitfalls. This collection also portends one of the next major issues in the ethics of medical technology: developing the requisite moral framework to accompany shifts toward patient-centred personalized healthcare.". (shrink)

The men and women who serve in the armed forces, in the words of Major General Joseph Caravalho, “sign a blank check, co-signed by their families, payable to the Army, Navy, Air Force, or Marines, up to and including their lives.” It is human nature to consider such a pact in polarized terms; the pact concludes in either a celebratory homecoming or funereal mourning. But in reality, surviving catastrophic injury may incur the greatest debt. The small but real possibility of (...) losing the ability to bear biological children due to genitourinary combat injury has been a topic of discussion in hushed tones, behind closed doors. But as policy changes move the conversation into the open, we must be fully aware of the far-reaching and long-term impacts of decisions on those who have sustained genitourinary injury. In January 2016, Secretary of Defense Ashton Carter outlined a set of reforms that would improve the quality of life for military families by recognizing the importance of maintaining fertility, even in the face of severe injury. This first promising step could build a solid foundation of insuring fertility preservation for wounded service members with genitourinary injury, and it could set a precedent beyond the military for insuring treatment for people who have lost their reproductive capacity. Thus, the ethical challenges raised by the new policy require careful analysis. (shrink)

BackgroundProfessional guidelines have addressed ethical dilemmas posed by a few types of nontraditional procreative arrangements, but many questions arise regarding how providers view and make decisions about these and other such arrangements.MethodsThirty-seven ART providers and 10 patients were interviewed in-depth for approximately 1 h each. Interviews were systematically analyzed.ResultsProviders faced a range of challenges and ethical dilemmas concerning both the content and the process of decisions about requests for unconventional interfamilial and other reproductive combinations. Providers vary in how they respond (...) — what they decide, who exactly decides, and how — often undergoing complex decision-making processes. These combinations can involve creating or raising the child, and can shift over time — from initial ART treatment through to the child’s birth. Patients’ requests can vary from fully established to mere possibilities. Arrangements may also be unstable, fluid, or unexpected, posing challenges. Difficulties emerge concerning not only familial but social, combinations. These arrangements can involve blurry and confusing roles, questions about the welfare of the unborn child, and unanticipated and unfamiliar questions about how to weigh competing moral and scientific concerns — e.g., the autonomy of the individuals involved, and the potential risks and benefits. Clinicians may feel that these requests do not “smell right”; and at first respond with feelings of “yuck,” and only later, carefully and explicitly consider the ethical principles involved. Proposed arrangements may, for instance, initially be felt to involve consanguineous individuals, but not in fact do so. Obtaining and verifying full and appropriate informed consent can be difficult, given implicit familial and/or cultural expectations and senses of duty. Social attitudes are changing, yet patients’ views of these issues may also vary, based on their cultural backgrounds.ConclusionsThese data, the first to examine how clinicians make decisions about unconventional reproductive arrangements, highlight several critical ethical questions and ambiguities, and variations in clinicians’ responses. While several professional guidelines exist, the current data highlight additional challenges, and have vital implications for improving future guidelines, practice, education and research.Trial registrationNot applicable. (shrink)

The 11 original regions for organ allocation in the United States were determined by proximity between hospitals that provided deceased donors and transplant programs. As liver transplants became more successful and demand rose, livers became a scarce resource. A national system has been implemented to prioritize liver allocation according to disease severity, but the system still operates within the original procurement regions, some of which have significantly more deceased donor livers. Although each region prioritizes its sickest patients to be liver (...) transplant recipients, the sickest in less liver-scarce regions get transplants much sooner and are at far lower risk of death than the sickest in more liver-scarce regions. This has resulted in drastic and inequitable regional variation in preventable liver disease related death rate.A new region districting proposal – an eight district model – has been carefully designed to reduce geographic inequities, but is being fought by many transplant centers that face less scarcity under the current model. The arguments put forth against the new proposal, couched in terms of fairness and safety, will be examined to show that the new system is technologically feasible, will save more lives, and will not worsen socioeconomic disparity. While the new model is likely not perfect, it is a necessary step toward fair allocation. (shrink)

As the USA contends with another surge in COVID-19 cases, hospitals may soon need to answer the unresolved question of who lives and dies when ventilator demand exceeds supply. Although most triage policies in the USA have seemingly converged on the use of clinical need and benefit as primary criteria for prioritisation, significant differences exist between institutions in how to assign priority to patients with identical medical prognoses: the so-called ‘tie-breaker’ situations. In particular, one’s status as a frontline healthcare worker (...) (HCW) has been a proposed criterion for prioritisation in the event of a tie. This article outlines two major grounds for reconsidering HCW prioritisation. The first recognises trust as an indispensable element of clinical care and mistrust as a hindrance to any public health strategy against the virus, thus raising concerns about the outward appearance of favouritism. The second considers the ways in which proponents of HCW prioritisation deviate from the very ‘ethics frameworks’ that often preface triage policies and serve to guide resource allocation—a rhetorical strategy that may undermine the very ethical foundations on which triage policies stand. By appealing to trust and consistency, we re-examine existing arguments in favour of HCW prioritisation and provide a more tenable justification for adjudicating on tie-breaker events during crisis standards of care. (shrink)

This manuscript reports on a landmark symposium on the ethical, legal and technical challenges of xenotransplantation in the UK. King’s College London, with endorsement from the British Transplantation Society (BTS), and the European Society of Organ Transplantation (ESOT), brought together a group of experts in xenotransplantation science, ethics and law to discuss the ethical, regulatory and technical challenges surrounding translating xenotransplantation into the clinical setting. The symposium was the first of its kind in the UK for 20 years. This (...) paper summarises the content of the expert lectures showcasing the progress which has been made in xenotransplantation including—the history of xenotransplantation, advances in gene edited animals and progress towards clinical xenotransplantation. We then set out the ethical and legal issues still to be resolved. Finally, we report the themes of the roundtable discussion highlighting areas of consensus and controversy. While the detail of the legal discussion was directed towards the UK, the principles and summary reported here are intended to be applicable to any jurisdiction seeking to implement clinical xenotransplantation. (shrink)

The scarcity of human organs requires the transplant community to make difficult allocation decisions. This process begins at individual medical centers, where transplant teams decide which patients to place on the transplant waiting list. Each transplant center utilizes its own listing criteria to determine if a patient is eligible for transplantation. These criteria have historically considered preexisting affective and psychotic disorders to be relative or absolute contraindications to transplantation. While attitudes within the field appear to be moving away from this (...) practice, there is no data to confirm that eligibility criteria have changed. There are no nationwide guidelines detailing the manner in which affective and psychotic disorders should impact transplant eligibility. Individual transplant centers thus form their own transplant eligibility criteria, resulting in significant inter-institution variability. Data from the 1990s indicates that the majority of transplant programs considered certain psychiatric illnesses, such as active schizophrenia, to be absolute contraindications to transplantation. A review of literature reveals that no comprehensive data has been collected on the topic since that time. Furthermore, the limited data available about current practices suggests that psychiatric illness continues to be viewed as a contraindication to transplantation at some transplant centers. In light of this finding, we review psychiatric literature that examines the impact of affective and psychotic disorders on transplant outcomes and conclude that the presence of these disorders is not an accurate predictor of transplant success. We then discuss the requirements of justice as they relate to the creation of a just organ allocation system. We conclude that transplant eligibility criteria that exclude patients with affective and psychotic disorders on the basis of their psychiatric diagnosis alone are unjust. Just listing criteria must incorporate only those factors that have a causative effect on posttransplant morbidity and mortality. Justice also demands that we eliminate current inter-institution practice variations in favor of national transplant eligibility criteria. Given the limited data available about current practices, we call for an updated study investigating the manner in which affect and psychotic disorders impact transplant eligibility determinations. (shrink)

This article is the lead piece in a special report that presents the results of a bioethical investigation into chimeric research, which involves the insertion of human cells into nonhuman animals and nonhuman animal embryos, including into their brains. Rapid scientific developments in this field may advance knowledge and could lead to new therapies for humans. They also reveal the conceptual, ethical, and procedural limitations of existing ethics guidance for human‐nonhuman chimeric research. Led by bioethics researchers working closely with (...) an interdisciplinary work group, the investigation focused on generating conceptual clarity and identifying improvements to governance approaches, with the goal of helping scholars, funders, scientists, institutional leaders, and oversight bodies (embryonic stem cell research oversight [ESCRO] committees and institutional animal care and use committees [IACUCs]) deliver principled and trustworthy oversight of this area of science. The article, which focuses on human‐nonhuman animal chimeric research that is stem cell based, identifies key ethical issues in and offers ten recommendations regarding the ethics and oversight of this research. Turning from bioethics’ previous focus on human‐centered questions about the ethics of “humanization” and this research's potential impact on concepts like human dignity, this article emphasizes the importance of nonhuman animal welfare concerns in chimeric research and argues for less‐siloed governance and oversight and more‐comprehensive public communication. (shrink)

The integration of ethical analysis in Health Technology Assessment (HTA) has proven difficult to implement even though it is explicitly recognized as an important component of such assessments in HTA literature. When compared to the standardized scientific method for systematic reviews in HTA, the diversity of ethical analysis has been characterized as a fundamental barrier to the integration of ethics. The present paper aims to identify the theoretical and practical differences between the approaches underpinning ethical analysis in HTA and (...) clarify the reasons for such diversity. Our systematic review of HTA literature pertaining to the barriers to the integration of ethics in HTA identified nine ethical approaches: Principlism, Casuistry, Coherence Analysis, Wide Reflective Equilibrium, Axiology, the Socratic approach, the Triangular model, Constructive Technology Assessment and Social Shaping of Technology. Citations pertaining to each approach were extracted and categorized according to three constitutive components of ethical argumentation established in a previous research evaluating nanotechnologies: i) the disciplinary foundation that grounds the validity of the ethical evaluation, ii) the characteristics of such evaluation, iii) the operational process involved in applying it to a particular case (i.e., its practical reasoning). This comparison shows that, 1) the difference between these approaches rests primarily on their disciplinary foundation (rooted in philosophy, philosophy/theology, or sociology), 2) their complexity can be observed in the distinct characteristics of ethical evaluation deriving from their differing disciplinary foundation, and 3) although four different types of operationalization procedure were identified, little information was available in regards to the practical reasoning associated with these approaches. (shrink)

When philosophers participate in the interdisciplinary ethical, environmental, economic, legal, and social analysis of nanotechnologies, what is their specific contribution? At first glance, the contribution of philosophy appears to be a clarification of the various moral and ethical arguments that are commonly presented in philosophical discussion. But if this is the only contribution of philosophy, then it can offer no more than a stalemate position, in which each moral and ethical argument nullifies all the others. To provide an alternative, we (...) must analyze the reasons behind the prevailing individual and cultural relativism in ethics. The epistemological investigation of this stalemate position will guide us to the core problem of the relation between theory and action . The stalemate can be overcome from a pragmatic philosophical standpoint, which combines epistemology, philosophy of language—that is, the philosophy of speech acts—and practical reasoning—that is, reasoning about decision-making . From this philosophical standpoint, it will be possible to show how philosophy can accompany and support the development of nanotechnologies. (shrink)

Human-nonhuman chimeric research—research on nonhuman animals who contain human cells—is being used to understand human disease and development and to create potential human treatments such as transplantable organs. A proposed advantage of chimeric models is that they can approximate human biology and therefore allow scientists to learn about and improve human health without risking harms to humans. Among the emerging ethical issues being explored is the question of at what point chimeras are “human enough” to have human rights and thus (...) be owed higher standards of research protection than that currently afforded to nonhuman animals. However, this question and other related questions assume that the ethics of experimenting on nonhuman animals have been settled, which they have not. In this essay, we argue that it is imperative to give adequate attention to familiar questions about nonhuman animal research as well as new questions about chimera research and that failure to do so will result in a distorted understanding of the ethics of chimera research. (shrink)

In response to the abundance of parenting literature and a contemporary emphasis on expertise, recent scholars have suggested that how we parent should be determined by values and a family’s particular needs, a combination often referred to as practical wisdom. In this article, I build on previous calls for an ethical approach to being a parent. I argue that being able to share and cultivate one’s unique personality and have one’s aptitudes and interests recognized is a key condition of (...) living well and that parents play an important role in helping their children know and realize their gifts. I put forth an exercise for attending to children, the descriptive review of the child. In doing so, I first describe this practice, illustrate it, and then explain how it can help one live well as a parent. (shrink)

The emergence and development of convergent technologies for the purpose of improving human performance, including nanotechnology, biotechnology, information sciences, and cognitive science (NBICs), open up new horizons in the debates and moral arguments that must be engaged by philosophers who hope to take seriously the question of the ethical and social acceptability of these technologies. This article advances an analysis of the factors that contribute to confusion and discord on the topic, in order to help in understanding why arguments that (...) form a part of the debate between transhumanism and humanism result in a philosophical and ethical impasse: 1. The lack of clarity that emerges from the fact that any given argument deployed (arguments based on nature and human nature, dignity, the good life) can serve as the basis for both the positive and the negative evaluation of NBICs. 2. The impossibility of providing these arguments with foundations that will enable others to deem them acceptable. 3. The difficulty of applying these same arguments to a specific situation. 4. The ineffectiveness of moral argument in a democratic society. The present effort at communication about the difficulties of the argumentation process is intended as a necessary first step towards developing an interdisciplinary response to those difficulties. (shrink)

The children’s market has become significantly more important to marketers in recent years. They have been spending increasing amounts on advertising, particularly of food and beverages, to reach this segment. At the same time, there is a critical debate among parents, government agencies, and industry experts as to the ethics of food advertising practices aimed toward children. The␣present study examines parents’ ethical views of food advertising targeting children. Findings indicate that parents’ beliefs concerning at least some dimensions of moral (...) intensity are significantly related to their ethical judgments and behavioral intentions of food advertising targeting children as well as the perceived moral intensity of the situation. (shrink)

RésuméIntroductionLa motivation est. un thème crucial et répandu en médecine. Que. ce soit pour un scénario clinique ou chirurgical, l’acceptation de prendre une pilule ou de se rendre à une consultation est. essentielle au succès du traitement médical. La “décennie du cerveau” a fourni aux praticiens des données neuroscientifiques substantielles sur le comportement humain, a aidé à expliquer pourquoi les gens font ce qu’ils font et a créé le concept de “cerveau motivé”. Les résultats de la psychologie empirique ont stratifié (...) la motivation en étapes de changement, qui sont devenues plus complexes au fil des décennies. Cette recherche vise à améliorer la compréhension de la façon dont les gens prennent des décisions concernant leur santé et comment mieux comprendre les stratégies et les techniques pour les aider à résoudre les problèmes d’ambivalence de manière efficace et ciblée.MéthodesNous établissons un dialogue avec la phénoménologie de la volonté de Ricoeur afin de comprendre le sens de ces découvertes scientifiques. À partir de la phénoménologie husserlienne, Paul Ricoeur a développé sa pensée en s’éloignant de l’idéalisme transcendantal en émancipant les structures intentionnelles de la volonté du domaine de la perception. Résultats: En introduisant les concepts de volontaire et d’involontaire, Ricoeur s’est. écarté du dualisme cartésien, qui fait du corps un corps d’objet, cible de vicissitudes naturelles. Le nouveau dualisme entre volontaire et involontaire est. traité par référence à ce que Ricoeur a appelé le mystère central de l’existence incarnée, qui considère l’homme “double dans l’humanité, simple dans lavitalité”. Cette dualité permet de considérer le cerveau comme l’organe naturel du comportement dans le corps humain et d’utiliser la psychologie empirique comme moyen d’échapper aux subjectivations superficielles des concepts.ConclusionLa simplicité (ou unité) d’existence invite la médecine à repenser certaines de ses hypothèses philosophiques, de telle sorte que les patients puissent être considérés comme des sujets autonomes avec des projets de vie d’auteur. L’anthropologie ricourienne a un impact éthique profond sur la manière dont la médecine devrait utiliser la technologie, ce qui découle de résultats de psychologie empirique. L’utilisation de ces nouvelles connaissances doit également faire l’objet d’une inspection minutieuse, car elle modifie le rôle social de la science médicale. (shrink)

Nous voulons mieux comprendre les lois circonscrivant le rôle social de l’Évaluation des technologies en santé (ETS) et les raisons empêchant l’inclusion de l’éthique en ETS. Nous avons ciblé un débat qui est au coeur du rôle perçu du droit réglementaire dans le développement de technologies en santé : l’opposition entre les enjeux environnementaux, sécuritaires et sanitaires (EHSI) et les enjeux éthiques, légaux et sociaux (ELSI), issus de la gouvernance technologique. La collecte de données est basée sur une revue de (...) la littérature issue de travaux antérieurs, et sur une analyse de cas où trois agences d’ETS ont été sélectionnées en utilisant différentes catégories d’obligation légale selon leur degré de force contraignante. La revue de littérature a révélé cinq thèmes relatifs au rôle social de l’ETS et une distinction entre le rôle/utilisation du droit dur et du droit souple dans le droit réglementaire, permettant ainsi de comprendre comment les agences ont utilisé le droit pour intégrer (ou non) l’éthique en ETS. Les deux approches ont démontré que le débat, EHSI/ELSI observé initialement dans la gouvernance et l’évaluation de technologies est reproduit en ETS. La principale tendance confirmée par ces analyses est la présence d’un pacte entre la science et le droit réglementaire. La demande sociale d’intégrer les ELSI, particulièrement l’évaluation éthique en ETS, n’est pas prise en compte par le droit réglementaire traditionnel régissant l’ETS et doit plutôt être considérée par le droit souple. Les difficultés d’intégration de l’éthique en ETS démontrent la nécessité de repenser la gouvernance juridique de l’ETS. (shrink)

The worldwide COVID-19 pandemic has shed more light on the difficulty of making health care decisions integrating scientific knowledge and values associated to life and death issues, human suffering, quality of life, economic losses, liberty of movement, etc. But the difficulties related to health care decisions and the use of innovative drugs or technologies are not new, and many countries have created agencies that have the mandate to evaluate new technologies in health care. Health Technological Assessment (HTA) reports’ aim is (...) to guide the decision makers in these difficult matters. There are two ethical components in HTA. The first is the report’s presentation of an ethical evaluation of the technology. The second is the value-ladenness of the HTA decision-making process itself. When implicit value judgments are not elicited, the justification of the final decision cannot be transparent. The present paper aims to identify and elicit the implicit value-judgments related to each step of the HTA process. This research is grounded on an applied ethics decision-making paradigm based on the role of value judgments in the decision-making process. The first part discusses two different approaches to values and value judgments in HTA. In the second part, citations mentioning value judgments extracted from a systematic review on the integration of ethics into HTA were categorized to elicit the value judgments and their criteria for each different HTA decision-making steps. The results show that there are 18 decision-making steps in the HTA process where 23 implicit value-judgments can be recognized. The range of these value judgments encompasses the whole HTA process: from the initial request, the presenting of the principal issues, to the final report’s dissemination. Since stakeholders need to understand which value judgments the conclusion of a report relies on, eliciting the implicit value judgments in the HTA decision-making process should yield more transparency. (shrink)

Current literature suggests that corporate social responsibility (CSR) can affect consumers' attitudes towards an organization and is regarded as a driver for reputation-building and fostering sustained consumer patronage. Although prior research has addressed the direct influence of CSR on consumer responses, this research examined the mediating influence of consumer's perceived organizational motives within an NGO setting.Given the heightened public attention surrounding the 2008 Beijing Olympic Games, data were collected from consumers of the Games to assess their perceptions of the International (...) Olympic Committee's (IOC) socially responsible initiatives. We hypothesized that consumers of the Games were likely to cognitively elaborate on CSR messages by way of three specific attribution effects derived from the literature. The results show that, contingent on CSR awareness, consumers responded positively to social efforts judged to be values-driven and stakeholder-driven; and a negative response was seen for efforts judged to be strategic. These attribution effects influenced various types of patronage and perceived organizational reputation. (shrink)

BackgroundTo assess ethical concerns associated with participation in a financial incentive programme to help adolescents with type 1 diabetes improve diabetes self-management.MethodsFocus groups with 46 adolescents with type 1 diabetes ages 12–17 and 38 of their parents were conducted in the Seattle, Washington metropolitan area. Semistructured focus group guides addressed ethical concerns related to the use of FI to promote change in diabetes self-management. Qualitative data were analysed and emergent themes identified.ResultsWe identified three themes related to the ethical issues adolescents (...) and parents anticipated with FI programme participation. First, FI programmes may variably change pressure and conflict in different families in ways that are not necessarily problematic. Second, the pressure to share FIs in some families and how FI payments are structured may lead to unfairness in some cases. Third, some adolescents may be likely to fabricate information in any circumstances, not simply because of FIs, but this could compromise the integrity of FI programmes relying on measures that cannot be externally verified.ConclusionsMany adolescents with type 1 diabetes and their parents see positive potential of FIs to help adolescents improve their self-management. However, ethical concerns about unfairness, potentially harmful increases in conflict/pressure and dishonesty should be addressed in the design and evaluation of FI programmes. (shrink)

Since the decade of the 1970s, and particularly since the first successful test-tube baby in 1978, the development and use of assisted reproductive technologies have grown exponentially. Would-be parents—including those in so-called traditional male-female marriages, unmarried adults, postmenopausal women, and same-sex partnerships—who just over 20 years ago had no recourse for their fertility issues can now pursue their desires to have children with at least a partial, if not, total, genetic and/or biological relationship. Ovulation-stimulating medications, artificial insemination using the sperm (...) of a husband or unrelated donor, in vitro fertilization with embryo transfer, intracytoplasmic sperm injection, and gamete and zygote intrafallopian transfers are but a few of a host of treatment options ranging in complexity, invasiveness, and expense. And on the horizon are genetic techniques such as cloning—which was once considered “pure” science fiction but in 1997 became what some call an inevitability, with the development of mammalian cloning in the form of the now-famous Dolly the sheep. (shrink)

Ethics consultation is a familiar concept to clinicians, and there are site-specific guidelines detailing procedures for both obtaining and performing these consults. Evaluative data about clinician experiences with ethics consults are becoming more extensive but information about family experiences, especially parent perceptions, of the same is lacking. Without a better understanding of those family experiences, an evidence base for ethics consultations cannot be built. This manuscript describes the reasons for obtaining this necessary information, details prior research designed (...) to obtain knowledge about family experiences with pediatric ethics consultations, and suggests mechanisms for acquiring it. (shrink)

When doing research among vulnerable populations, researchers are obliged to protect their subjects from harm. We will argue that traditional ethical guidelines are not sufficient to do this, since they mainly focus on direct harms that can occur: for example, issues around informed consent, fair recruitment and risk/harm analysis. However, research also entails indirect harms that remain largely unnoticed by research ethical committees and the research community. Indirect harms do not occur during data collection, but in the analysis of the (...) data, and how the data is presented to the scientific and wider societal community. Highly stigmatized research subjects, like substance‐dependent parents, are especially at risk of encountering indirect harm, because the prejudice against them is so persistent. In this paper we discuss two forms of indirect harm. First, researchers have to be aware how their results will be preceived by society. Even when subjects are presented in an objective way, further, out of porportion stigmatization can occur. Researchers sometimes try to counteract this by whitewashing their results, at the risk of downplaying their respondents’ problems. The second risk researchers face is that their own normative judgements influence how they question such parents, report results and interpret statements. Researchers’ own normative judgements may influence the way they present their subjects. This article reviews a broad range of research that exhibits such indirect harms, discussing how and why indirect harms occur and formulating corresponding recommendations on how to prevent them. (shrink)

Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric (...) oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. (shrink)

Ethical frameworks can support professionals’ decision‐making. Here, we identify two ethical frameworks to analyse the best support for families that struggle with parental substance or alcohol abuse. The first framework, which we call ‘the framework of conflicting interests’, is most prominent in the literature. Here, the interests of parents and children are weighed against each other using the medical ethical principles of respect for autonomy, justice, beneficence, and non‐maleficence. The second framework is most prominent in a series of interviews we (...) conducted with alcohol‐dependent parents and professionals working in addiction care and youth care. This framework aligns more with an ethics of care, and starts with the assumption that the interests of people who are close to each other are often intertwined. This framework does not so much look at conflicting interests, but at relationships and vulnerability. We label this the ethics of care framework. In this article, we show the value of both frameworks and how they can support ethical decision‐making. (shrink)

Objective: To examine i) how ethical frameworks can be used in concrete cases of parent–doctors’ disagreements for extremely preterm infants born in the grey zone to guide such difficult decision-making; and ii) what challenges stakeholders may encounter in using these frameworks. Design: We did a case analysis of a concrete case of parent–doctor disagreement in the grey zone using two ethical frameworks: the best interest standard and the zone of parental discretion. Results: Both ethical frameworks entailed similar advantages and challenges. (...) They have the potential 1) to facilitate decision-making because they follow a structured method; 2) to clarify the situation because all relevant ethical issues are explored; and 3) to facilitate reaching an agreement because all parties can explain their views. We identified three main challenges. First, how to objectively evaluate the risk of severe disability. Second, parents’ interests should be considered but it is not clear to what extent. Third, this is a value-laden situation and different people have different values, meaning that the frameworks are at least partially subjective. Conclusions: These challenges do not mean that the ethical frameworks are faulty; rather, they reflect the complexity and the sensitivity of cases in the grey zone. (shrink)

We examined how the cultural dimension of universalism–particularism influences managers’ attitudes toward relational favoritism. Paradoxically, we found in a survey study that Brazilian and Chinese managers perceived more negative consequences of relational favoritism than did American managers—even though the Brazilians and the Chinese perceived stronger particularistic cultural norms in their countries than Americans did in the United States. We attribute this pattern of results to “cultural reflexivity”—the ability of people from transforming economies to be culturally self-critical during a period of (...) dramatic societal change. This pattern of results also emerged in a scenario study in which we asked these same Brazilian, Chinese, and American participants to assess managerial succession decisions made by a General Manager. We varied the scenarios so that the promoted manager was either a colleague with no pre-existing relation with the GM or a colleague who was a relative, a close friend, from the same town, or from the same school. Consistent with the results of the survey study, we found that perceived cultural norms of particularism were negatively related to perceptions of fairness. In other words, Brazilians and Chinese, even while living in more particularistic cultures, were more harsh in judging relational favoritism. We conclude with a discussion on the implications of these paradoxical relationships. (shrink)

Abstract:Facial transplantation is emerging as a therapeutic option for self-inflicted gunshot wounds. The self-inflicted nature of this injury raises questions about the appropriate role of self-harm in determining patient eligibility. Potential candidates for facial transplantation undergo extensive psychosocial screening. The presence of a self-inflicted gunshot wound warrants special attention to ensure that a patient is prepared to undergo a demanding procedure that poses significant risk, as well as stringent lifelong management. Herein, we explore the ethics of considering mechanism of (...) injury in the patient selection process, referring to the precedent set forth in solid organ transplantation. We also consider the available evidence regarding outcomes of individuals transplanted for self-inflicted mechanisms of injury in both solid organ and facial transplantation. We conclude that while the presence of a self-inflicted gunshot wound is significant in the overall evaluation of the candidate, it does not on its own warrant exclusion from consideration for a facial transplantation. (shrink)

Dealing with situations where parents’ views about treatment for their child are strongly opposed to doctors’ views is one major area of ethical challenge in paediatric health care. The traditional approach focuses on the child’s best interests, but this is problematic for a number of reasons. The Harm Principle test is regarded by many ethicists as more appropriate than the best interests test. Despite this, use of the best interests test for intervening in parental decisions is still very common in (...) clinical settings and can lead to confusion. In this paper, I propose the Zone of Parental Discretion as a means of putting into practice the key ideas of the Harm Principle, in a clear, step-by-step process. The Zone of Parental Discretion provides a tool for ethical deliberation by clinicians and ethicists about all situations in which parents and doctors disagree about treatment of a child, whether parents are refusing medically recommended treatment, or requesting non-recommended treatment. (shrink)

In recent years, progress in cancer treatment has greatly increased the chances of recovery. Yet, treatment may have irreversible effects on patients’ fertility. In order to protect future fertility, preservation of ovarian tissue may be offered today even to very young girls, involving a surgical procedure that may be performed by minimally invasive laparoscopy, under general anesthesia. However, in the tragic event of a girl’s death, questions may arise regarding the possible use of the preserved ovarian tissue by her parents. (...) Should posthumous reproductive use of ovarian tissue without the girl’s prior consent (due to her young age) be considered a violation of her rights? On the other hand, can it be argued that it is in the interest of a child who died young to leave a genetic trace through posthumous reproduction, because genetic continuity is in the interest of every human being? After presenting the relevant clinical facts, we explore the ethical dimensions of this possible practice through an analysis of the interests of the deceased, her parents, and the child that may be born posthumously. (shrink)