For trans youth, the experience of gender differs from expectations based on sex assigned at birth (Frohard-Dourlent, Dobson, Clark, Duoll, & Saewyc, 2016). To support gender health—the ability to...

This paper considers the accountability of professionals who are involved in situations of the failure of their organization to perform its expected role properly; the case of infant Caleb Ness, who died despite the surveillance of welfare agencies, is taken as an illustration. Following Bovens (?The Quest for Responsibility: Accountability and Citizenship in Complex Organisations?, Cambridge University Press, Cambridge, 1998), it is accepted that there is an irreducible element of individual personal responsibility when preventable organizational failures occur through professional incompetence (...) or corruption. The type of guidance available from specialized professional knowledge and from ethical codes is appraised. This is contrasted with various theoretical approaches to practical reasoning, which are offered as a more relevant perspective on professional misconduct. Practical reason necessarily addresses itself to a reality much more uncertain, fluid and contingent than envisaged by the standard conceptions of professional knowledge and ethics. Rather then being derived strictly from impersonal abstract rules and formal knowledge, practical reason in large part reflects the character and personality of its owner. It is argued that, since professional responsibility is always partly personal, professional misconduct can be understood as a failure of practical reason. (shrink)

A number of Artificial Intelligence (AI) ethics frameworks have been published in the last 6 years in response to the growing concerns posed by the adoption of AI in different sectors, including healthcare. While there is a strong culture of medical ethics in healthcare applications, AI-based Healthcare Applications (AIHA) are challenging the existing ethics and regulatory frameworks. This scoping review explores how ethics frameworks have been implemented in AIHA, how these implementations have been evaluated and whether they have been successful. (...) AI specific ethics frameworks in healthcare appear to have a limited adoption and they are mostly used in conjunction with other ethics frameworks. The operationalisation of ethics frameworks is a complex endeavour with challenges at different levels: ethics principles, design, technology, organisational, and regulatory. Strategies identified in this review are proactive, contextual, technological, checklist, organisational and/or evidence-based approaches. While interdisciplinary approaches show promises, how an ethics framework is implemented in an AI-based Healthcare Application is not widely reported, and there is a need for transparency for trustworthy AI. (shrink)

BackgroundSome people with progressive neurological diseases find they need additional support with eating and drinking at mealtimes, and may require artificial nutrition and hydration. Decisions concerning artificial nutrition and hydration at the end of life are ethically complex, particularly if the individual lacks decision-making capacity. Decisions may concern issues of life and death: weighing the potential for increasing morbidity and prolonging suffering, with potentially shortening life. When individuals lack decision-making capacity, the standard processes of obtaining informed consent for medical interventions (...) are disrupted. Increasingly multi-professional groups are being utilised to make difficult ethical decisions within healthcare. This paper reports upon a service evaluation which examined decision-making within a UK hospital Feeding Issues Multi-Professional Team.MethodsA three month observation of a hospital-based multi-professional team concerning feeding issues, and a one year examination of their records. The key research questions are: a) How are decisions made concerning artificial nutrition for individuals at risk of lacking decision-making capacity? b) What are the key decision-making factors that are balanced? c) Who is involved in the decision-making process?ResultsDecision-making was not a singular decision, but rather involved many different steps. Discussions involving relatives and other clinicians, often took place outside of meetings. Topics of discussion varied but the outcome relied upon balancing the information along four interdependent axes: Risks, burdens and benefits; Treatment goals; Normative ethical values; Interested parties.ConclusionsDecision-making was a dynamic ongoing process with many people involved. The multiple points of decision-making, and the number of people involved with the decision-making process, mean the question of ‘who decides’ cannot be fully answered. There is a potential for anonymity of multiple decision-makers to arise. Decisions in real world clinical practice may not fit precisely into a model of decision-making. The findings from this service evaluation illustrate that within multi-professional team decision-making; decisions may contain elements of both substituted and supported decision-making, and may be better represented as existing upon a continuum. (shrink)

The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The objective of the current study was to explore in-depth and to explain the decision-making process from the perspective of Mexican oncologists, parents, and affected adolescents and to identify the ethical principles that guide such decision-making. Purposive, qualitative design based on individual, fact-to-face, semi-structured, in-depth interviews. The participants were thirteen paediatric oncologists, 13 (...) parents or primary carers, and six adolescents with incurable cancer. The participants were recruited from the paediatric oncology services of three national tertiary-care medical centres in Mexico City. The oncologists stated that they broach the subject of palliative management when they have determined that curative treatment has failed. Respect for autonomy was understood as the assent of the parent/adolescent to what the oncologist determined to be in the best interest of the adolescent. The oncologists thought that the adolescent should be involved in the decision-making. They also identified the ability to count on a palliative care clinic or service as an urgent need. For the parents, it was essential that the oncologist be truly interested in their adolescent child. The parents did not consider it necessary to inform the child about impending death. The adolescents stated that the honesty of their oncologists was important; however, several of them opted for a passive role in the decision-making process. The findings of this study evidence that to achieve good medical practice in low-middle income countries, like Mexico, it is urgent to begin effective implementation of palliative care, together with appropriate training and continuing education in the ethics of clinical practice. (shrink)

Contributions to the philosophical genre of popular culture and philosophy aim to popularize philosophical ideas with the help of references to the products of popular culture with TV series like The Simpsons, Hollywood blockbusters like The Matrix and Jurassic Park, or popular music groups like Metallica. While being commercially successful, books in this comparatively new genre are often criticized for lacking scientific rigor, providing a shallow cultural commentary, and having little didactic value to foster philosophical understanding. This paper discusses some (...) of these methodological and didactic objections and seeks to encourage a constructive discussion of concerns with the genre. It shows how the genre similar to previous attempts to foster public understanding of philosophy and that it is a methodologically viable approach to reach a broad range of readers with diverse informational preferences and educational backgrounds. Considering what makes this approach to the popularization of philosophical thinking successful will shed light on some of the criteria for popularization of philosophy in general. (shrink)

In this article, I investigate how we may include investigations of actual context in the investigation of moral problems in philosophy. The article has three main parts. The focus of the first is a survey of the dominant view of how to incorporate context into moral philosophy and to exemplify this view, I investigate examples from influential introductions to moral philosophy, identifying what I call the assumption of abstraction. In the second part I present three traditions which attribute a more (...) prominent place to context in philosophical work and which therefore offer resources for thinking about context: moral contextualism, particularism and contextualism in political philosophy. Unconvinced that these resources are sufficient for an understanding of how actual context may be of importance in philosophy, I in the third part turn to a systematic investigation of three suggestions for how to incorporate actual context onto philosophy: the application approach, the bottom-up approach and the contextual approach. Furthermore, I argue that the third and most radical approach develops a superior understanding of how to include context in moral philosophy, reflecting the impossibility of making normatively neutral investigations of context in moral philosophy. (shrink)

Malaysia had its first four patients with COVID-19 on 25 January 2020. In the same week, the World Health Organization declared it as a public health emergency of international concern. The pandemic has since challenged the ethics and practice of medicine. There is palpable tension from the conflict of interest between public health initiatives and individual’s rights. Ensuring equitable care and distribution of health resources for patients with and without COVID-19 is a recurring ethical challenge for clinicians. Palliative care aims (...) to mitigate suffering caused by a life-limiting illness, and this crisis has led to the awareness and urgency to ensure it reaches all who needs it. We share here the palliative care perspectives and ethical challenges during the COVID-19 pandemic in Malaysia. (shrink)

Public health ethics, like the field of public health it addresses, traditionally has focused more on practice and particular cases than on theory, with the result that some concepts, methods, and boundaries remain largely undefined. This paper attempts to provide a rough conceptual map of the terrain of public health ethics. We begin by briefly defining public health and identifying general features of the field that are particularly relevant for a discussion of public health ethics.Public health is primarily concerned with (...) the health of the entire population, rather than the health of individuals. Its features include an emphasis on the promotion of health and the prevention of disease and disability; the collection and use of epidemiological data, population surveillance, and other forms of empirical quantitative assessment; a recognition of the multidimensional nature of the determinants of health; and a focus on the complex interactions of many factors—biological, behavioral, social, and environmental—in developing effective interventions. (shrink)

While the implementation of digital technology in psychiatry appears promising, there is an urgent need to address the implications of the absence of ethical design in the early development of such technologies. Some authors have noted the gap between technology development and ethical analysis and have called for an upstream examination of the ethical issues raised by digital technologies. In this paper, we address this suggestion, particularly in relation to digital healthcare technologies for patients with schizophrenia spectrum disorders. The introduction (...) of digital technologies in psychiatry offers a broad spectrum of diagnostic and treatment options tailored to the health needs and goals of patients’ care. These technologies include wearable devices, smartphone applications for high-immersive virtual realities, smart homes, telepsychiatry and messaging systems for patients in rural areas. The availability of these technologies could increase access to mental health services and improve the diagnostics of mental disorders.Additional Instruction AbstractIn this descriptive review, we systematize ethical concerns about digital technologies for mental health with a particular focus on individuals suffering from schizophrenia. There are many unsolved dilemmas and conflicts of interest in the implementation of these technologies, such as (1) the lack of evidence on efficacy and impact on self-perception; (2) the lack of clear standards for the safety of their daily implementation; (3) unclear roles of technology and a shift in the responsibilities of all parties; (4) no guarantee of data confidentiality; and (5) the lack of a user-centered design that meets the particular needs of patients with schizophrenia. mHealth can improve care in psychiatry and make mental healthcare services more efficient and personalized while destigmatizing mental health disorders. To ensure that these technologies will benefit people with mental health disorders, we need to heighten sensitivity to ethical issues among mental healthcare specialists, health policy makers, software developers, patients themselves and their proxies. Additionally, we need to develop frameworks for furthering sustainable development in the digital technologies industry and for the responsible usage of such technologies for patients with schizophrenia in the clinical setting. We suggest that digital technology in psychiatry, particularly for schizophrenia and other serious mental health disorders, should be integrated into treatment with professional supervision rather than as a self-treatment tool. (shrink)

The American Journal of Bioethics, Volume 11, Issue 9, Page 20-21, September 2011.

Informed consent is normally understood as something that a patient gives prior to a medical intervention that can render it morally permissible. Whether or not it must be given prior to the intervention is debated. Some have argued that subsequent consent—that is, consent given after a medical intervention—can also render an otherwise impermissible act permissible. If so, then a patient may give her consent to an intervention that has already been performed and thereby justify a physician’s act retroactively. The purpose (...) of this paper is to argue that even if subsequent consent can render an otherwise impermissible act permissible, doctors are still blameworthy if they rely on it when prior consent could be given, because they would be banking on the justification of their interventions. Since doctors can only guess if patients will consent after the fact, they would be placing their patients at unreasonable risk of being disrespected as persons. (shrink)

This paper challenges the foundational claim that the human family is no more than a social construction. It advances the position that the family is a central category of experience, being, and knowledge. Throughout, the analysis argues for the centrality of the family for human flourishing and, consequently, for the importance of sustaining family-oriented practices within social policy, such as more family-oriented approaches to consent to medical treatment. Where individually oriented approaches to medical decision-making accent an ethos of isolated personal (...) autonomy family-oriented approaches acknowledge the central social and moral reality of the family. I argue that the family ought to be appreciated as more than a mere network of personal relations and individual undertakings; the family possesses a being that is social and moral such that it realizes a particular structure of human good and sustains the necessary conditions for core areas of human flourishing. Moreover, since the family exists as a nexus of face-to-face relationships, the consent of persons, including adults, to be members of a particular family, subject to its own respective account of family sovereignty, is significantly more amply demonstrated than the consent of citizens to be under the authority of a particular state. As a result, in the face of a general Western bioethical affirmation of the autonomy of individuals, as if adults and children were morally and socially isolated agents, this paper argues that social space must nevertheless be made for families to choose on behalf of their own members. (shrink)

OBJECTIVES: To determine the epidemiology and the underlying pathological conditions of natural deaths among motor vehicle drivers. Sudden death while driving may cause damage to properties, other vehicles or road users. Although the Medical Commission on Accident Prevention recommended restrictions to drivers at risk of sudden death due to their medical conditions, these restrictions are useless if they do not result in greater safety to the public. DESIGN: A retrospective study of natural deaths of motor vehicle drivers. SETTING: Natural deaths (...) of motor vehicle drivers reported to the coroner for Birmingham and Solihull. SUBJECTS: 86 consecutive natural deaths of motor vehicle drivers in a five-year period between 1984 and 1988. RESULTS: Of the 86 fatalities reviewed, 80 (93%) sudden deaths were caused by ischaemic heart disease. Fifty vehicles were involved in collision with 32 properties, 20 other vehicles and six pedestrians. Fifty-one out of 80 cardiac deaths had past cardiac history and three had reported chest pain prior to the sudden death. CONCLUSION: An applied normative ethical assessment based on the basic moral principles of autonomy, justice, beneficence and non-maleficence are discussed. We conclude that medical screening of drivers has little benefit for the drivers or other persons. (shrink)

In order to involve children in the decision-making process about participation in medical research it is widely recommended that the child’s assent be sought in addition to parental consent. However, the concept of assent is fraught with difficulties, resulting in confusion among researchers and ethics committees alike.

Bioethicists often remind health care professionals to pay close attention to issues of diversity and inclusion. Approaches to ethics consultation, where the perspective of the bioethicist is taken to be more morally correct or necessarily authoritative, have been critiqued as inappropriately authoritarian. Despite such apparent recognition of the importance of respecting moral diversity and the inclusion of different viewpoints, authoritarianism is all too often the approach adopted, especially as bioethics has shifted evermore into concerns for public policy. Yet, secular values (...) and philosophical principles are not morally neutral; nor are the private moral convictions of bioethicists. Such analysis is always grounded in particular understandings of the right and the good, the virtuous and the just. Critical examination of common treatments and new alternatives is essential for the careful scientific practice of medicine. The same is true with regard to bioethics. Stagnating in customary or accepted claims of a common secular morality or a standard set of bioethical principles out of an unwillingness to explore the real diversity of moral thought, including traditional religious and cultural worldviews, fails to tap the human capacity to find innovative solutions to the complex challenges facing medicine. (shrink)

This paper argues that substantive ethical rules serve a critical ethical function, even in those cases where we should deviate from those rules. Assuming that the rules are valid provides decision-makers with the context essential to reaching a well-justified decision. Recognizing this helps to reconcile two attractive but incompatible positions regarding the evaluation of healthcare ethics consultants. The first position is that ethical rules can validly be used to evaluate the quality of consultants’ advice, ensuring conformity to standards promoted by (...) a significant portion of medical ethicists. The second position—the message of ethical particularism—is that we should not evaluate consultants according to strict rules, since good ethical advice may deviate from even the most carefully wrought moral rules. Steering a path between these extremes, I argue that we should evaluate the quality of consultations by examining whether consultants have communicated the relevant ethical rules to participants as ethical presumptions. In communicating presumptions, a consultant provides an indispensable ingredient to ethical decision-making, while leaving open the possibility that the ethical course of action involves violating the very ethical rules that one should presume. (shrink)

The Pharmaceutical Benefits Scheme, operating in Australia under the National Health Act 1953, provides citizens equal access to subsidised pharmaceuticals. With ever-increasing costs of medicines and global financial pressure on all commodities, the sustainability of the PBS is of crucial importance on many social and political fronts. Direct-to-consumer advertising (DTCA) of prescription medicines is fast expanding, as pharmaceutical companies recognise and reinforce marketing potentials not only in healthcare professionals but also in consumers. DTCA is currently prohibited in Australia, but pharmaceutical (...) companies continuously lobby for the ban to be lifted. There is evidence that such marketing strategies influence consumer behaviour and concerns have been raised about whether DTCA could affect government expenditure on the PBS in Australia. This pharmacy-based study explored Australian consumer attitudes towards DTCA and whether consumer attitudes regarding DTCA differ based on socioeconomic status, measured in terms of income and education. Consumers from different socioeconomic areas in Sydney were asked to respond to a survey about an advertisement created specifically for the promotion of a mock prescription medicine. Their views about the intent, value and reliability of the advertisement were explored. The study found that consumers of lower socioeconomic status were more likely to perceive DTCA as a source of valuable and reliable medical information, and that they were more likely to request an advertised medication from their physician. If DTCA of prescription medicines was to be introduced in Australia, an increase in government expenditure on the PBS would be anticipated. Findings of this study also expose a deficit in respect for patients’ right to autonomy and informed consent which should be based on evidence-based, unbiased, information rather than advertisements. (shrink)

The right to refuse treatment is generally accepted in the legal and bioethics discourses; however, the use of advance directives remains contentious. Some jurisdictions have introduced statutory frameworks to govern the creation and implementation of advance directives, underpinned primarily by the recognition of respect for personal autonomy. Although there are no legislation and judicial decisions on advance decision-making in Malaysia, the considered view is that healthcare practitioners perceived its utility in managing patient care. This paper examines the potential and challenges (...) of applying a statutory framework in Malaysia, drawing from relevant regulatory examples. It argues for greater public awareness within the healthcare discourse and knowledge dissemination regarding the availability, usage and clinical guidance on advance decision-making. The main conclusion drawn from this exploratory analysis is that further understanding of and education about advance decision-making within the population and healthcare practitioners should precede the implementation of a statutory regime in Malaysia. (shrink)

This article aims to explore the attitudes and behaviors of persons with intellectual and developmental disabilities related to their information privacy when using information technology. Six persons with IDD were recruited to participate to a series of 3 semistructured focus groups. Data were analyzed following a hybrid thematic analysis approach. Only 2 participants reported using IT every day. However, they all perceived IT use benefits, such as an increased autonomy. Participants demonstrated awareness of privacy concerns, but not in situations involving (...) the use of technology; their awareness is not transferred to the abstract context of IT use. Privacy breaches were revealed to be a major risk for persons with IDD, who did not seem to understand how their personal information was used. Most protection mechanisms and tools reported were those suggested and implemented by caregivers and close relatives who had a great influence on the participants’ attitudes and behaviors toward IT and privacy. Our findings suggest that when using IT, persons with IDD often experience the consequences of a trade-off between autonomy and privacy. Further research and action is needed to support persons with IDD to understand and balance the benefits of IT use and the inherent threats to information privacy. (shrink)

One of the ethical issues that has been raised recently regarding emerging neurotherapies is that people will be coerced explicitly or implicitly in the workplace or in schools to take cognitive enhancing drugs. This article builds on this discussion by showing how the law may pressure people to adopt emerging neurotherapies. It focuses on a range of private law doctrines that, unlike the criminal law, do not come up very often in neuroethical discussions. Three doctrines—the doctrine of mitigation, the standard (...) of care in negligence, and child custody determinations in family law—are addressed to show how the law may pressure people to consent to treatment by offering a choice between accepting medical treatment and suffering a legal disadvantage. The doctrines considered in this article apply indirect pressure to submit to treatment, unlike court-ordered medical treatment, which applies direct pressure and is not addressed here. The outcome of this discussion is to show that there is a greater range of social pressures that may encourage the uptake of novel neurotherapies than one might initially think. Once treatments that were developed and offered with therapeutic benefits in mind become available, their existence gives rise to unintended legal consequences. This certainly does not mean we should cease developing new therapies that may be of tremendous benefit to patients, but it does raise some questions for physicians and for legal policy-makers. How should physicians, who are required by medical ethical principles to obtain valid consent to treatment, react to a patient’s reluctant consent that is driven by legal pressure? From the legal policy perspective, are our legal doctrines satisfactory or should they be changed because, for example, they unduly promote the collective interest over individual freedom to reject medical treatment or because they channel us toward economically efficient treatments to the detriment of more costly but potentially superior approaches of dealing with behavioural problems? (shrink)

On reading “Algorithms for Ethical Decision-Making in the Clinical: A Proof of Concept,” I imagined that for some the fundamental problem with the authors' approach is the very...

Next SectionThe dominant conception of medical ethics being taught in British and American medical schools is at best pointless and at worst dangerous, or so it will be argued. Although it is laudable that medical schools have now given medical ethics a secure place in the curriculum, they go wrong in treating it like a scientific body of knowledge. Ethics is a unique subject matter precisely because of its widespread familiarity in all areas of life, and any teaching has to (...) start from this shared ethical understanding and from the familiar ethical concepts of ordinary language. Otherwise there is a real risk that spurious technocratic jargon will be deployed by teacher and student alike in the futile search for intellectual respectability, culminating in a misplaced sense of having “done” the ethics module. There are no better examples of such jargon than “consequentialism”, “deontology”, and the “Four Principles”. At best, they cannot do the work they were designed to do and, at worst, they can lead student and practitioner into ignoring their own healthy ethical intuitions and vocabulary. (shrink)

Consider manipulation in which one agent, avoiding force, threat, or fraud mobilizes some non-concern motive of another so as to induce this other to behave or move differently than she would otherwise have behaved or moved, given her circumstances and her initial ranking of concerns. As an instance, imagine that I get us to miss the opening of a play that I have grudgingly agreed to attend by engaging your sublimated compulsive tendency to check the stove when we are halfway (...) to the theatre. Such motive manipulation is, I take it, widely regarded as morally worrisome. If it really is morally worrisome, then we should be able to explain adequately why it is so. But existing condemnations of manipulation come up short in this regard. In this paper, I develop and defend a more plausible account of the moral status of this phenomenon. (shrink)

The use of drones in public healthcare is suggested as a means to improve efficiency under constrained resources and personnel. This paper begins by framing drones in healthcare as a social experiment where ethical guidelines are needed to protect those impacted while fully realizing the benefits the technology offers. Then we propose an ethical framework to facilitate the design, development, implementation, and assessment of drones used in public healthcare. Given the healthcare context, we structure the framework according to the four (...) bioethics principles: beneficence, non-maleficence, autonomy, and justice, plus a fifth principle from artificial intelligence ethics: explicability. These principles are abstract which makes operationalization a challenge; therefore, we suggest an approach of translation according to a values hierarchy whereby the top-level ethical principles are translated into relevant human values within the domain. The resulting framework is an applied ethics tool that facilitates awareness of relevant ethical issues during the design, development, implementation, and assessment of drones in public healthcare. (shrink)

Morally contoured empathy is a form of reasonable partiality essential to the healthy care of dependents. It is critical as an epistemic aid in determining proper moral responsiveness; it is also, within certain richly normative roles and relationships, itself a crucial constitutive mode of moral connection. Yet the achievement of empathy is no easy feat. Patterns of incuriosity imperil connection, impeding empathic engagement; inappropriate empathic engagement, on the other hand, can result in self-effacement. Impartial moral principles and constraints offer at (...) best meager protection against these perils, and hence serve poorly in securing morally contoured empathy. More nuanced and practical guidance should be sought in normatively substantive conceptions of our roles and relationships and their defining moral stakes. These, joined with more abstract moral tools, can facilitate rich, narratively textured interpretations of moralitys demands. While the content of our normative conceptions must be continually debated, engaging in this debate is vital to the achievement of proper empathy, and thus to effective, respectful, morally healthy care of dependents. (shrink)

A barrier to the development and refinement of ethics education in and across health professional schools is that there is not an agreed upon instrument or method for assessment in ethics education. The most widely used ethics education assessment instrument is the Defining Issues Test (DIT) I & II. This instrument is not specific to the health professions. But it has been modified for use in, and influenced the development of other instruments in, the health professions. The DIT contains certain (...) philosophical assumptions (“Kohlbergian” or “neo-Kohlbergian”) that have been criticized in recent years. It is also expensive for large institutions to use. The purpose of this article is to offer a rubric—which the authors have named the Health Professional Ethics Rubric—for the assessment of several learning outcomes related to ethics education in health science centers. This rubric is not open to the same philosophical critiques as the DIT and other such instruments. This rubric is also practical to use. This article includes the rubric being advocated, which was developed by faculty and administrators at a large academic health science center as a part of a campus-wide ethics education initiative. The process of developing the rubric is described, as well as certain limitations and plans for revision. (shrink)

Should there be a female age limit on public funding for assisted reproductive technology (ART)? The question bears significant economic and sociopolitical implications and has been contentious in many countries. We conceptualise the question as one of justice in resource allocation, using three much-debated substantive principles of justice—the capacity to benefit, personal responsibility, and need—to structure and then explore a complex of arguments. Capacity-to-benefit arguments are not decisive: There are no clear cost-effectiveness grounds to restrict funding to those older women (...) who still bear some capacity to benefit from ART. Personal responsibility arguments are challenged by structural determinants of delayed motherhood. Nor are need arguments decisive: They can speak either for or against a female age limit, depending on the conception of need used. We demonstrate how these principles can differ not only in content but also in the relative importance they are accorded by governments. Wide variation in ART public funding policy might be better understood in this light. We conclude with some inter-country comparison. New Zealand and Swedish policies are uncommonly transparent and thus demonstrate particularly well how the arguments we explore have been put into practice. (shrink)

This Introduction to the collection of essays surveys the philosophical literature to date with respect to five central questions: justice, care, agency, metaphilosophical issues regarding the language and representation of cognitive disability, and personhood. These themes are discussed in relation to three specific conditions: intellectual and developmental disabilities, Alzheimer's disease, and autism, though the issues raised are relevant to a broad range of cognitive disabilities. The Introduction offers a brief historical overview of the treatment cognitive disability has received from philosophers, (...) and explains the specific challenges that cognitive disability poses to philosophy. In briefly summarizing the essays in the collection, it highlights the distinctive contributions the collection makes to ethics, political philosophy, bioethics, and the philosophy of disability. We hope that the richness of the topics explored by these essays will be a spur to further investigation. (shrink)

We clarify options for conceptualizing equity, or what we refer to as justice, in resource allocation. We do this by systematically differentiating, expounding, and then illustrating eight different substantive principles of justice. In doing this, we compare different meanings that can be attributed to “need” and “the capacity to benefit”. Our comparison is sharpened by two analytical tools. First, quantification helps to clarify the divergent consequences of allocations commended by competing principles. Second, a diagrammatic approach developed by economists Culyer and (...) Wagstaff offers a visual and conceptual aid. Of the eight principles we illustrate, only two treat as relevant both a person’s initial health state and a person’s CTB per resource unit expended: allocate resources so as to most closely equalize final health states and allocate resources so as to equally restore health states to population norms. These allocative principles ought to be preferred to the alternatives if one deems relevant both a person’s initial health state and a person’s CTB per resource unit expended. Finally, we examine some possibilities for conceptualizing benefits as relative to how badly off someone is, extending Parfit’s thought on Prioritarianism. Questions arise as to how much intervention effects accruing to the worse off count for more and how this changes with improving health. We explicate some recent efforts to answer these questions, including in Dutch and British government circles. These efforts can be viewed as efforts to operationalize need as an allocative principle. Each effort seeks to maximize in the aggregate quanta of effect that are differentially valued in favor of the worst off. In this respect, each effort constitutes one type of Prioritarianism, which Parfit failed to differentiate from other types. (shrink)

In “There’s No Harm in Talking,” McCarthy, Homan, and Rozier note that in recent years theological bioethicists have not felt the need to translate their insights for a broader pluralistic a...

Developing and implementing artificial intelligence (AI) systems in an ethical manner faces several challenges specific to the kind of technology at hand, including ensuring that decision-making systems making use of machine learning are just, fair, and intelligible, and are aligned with our human values. Given that values vary across cultures, an additional ethical challenge is to ensure that these AI systems are not developed according to some unquestioned but questionable assumption of universal norms but are in fact compatible with the (...) societies in which they operate. This is particularly pertinent for AI research and implementation across Africa, a ground where AI systems are and will be used but also a place with a history of imposition of outside values. In this paper, we thus critically examine one proposal for ensuring that decision-making systems are just, fair, and intelligible—that we adopt a principle of explicability to generate specific recommendations—to assess whether the principle should be adopted in an African research context. We argue that a principle of explicability not only can contribute to responsible and thoughtful development of AI that is sensitive to African interests and values, but can also advance tackling some of the computational challenges in machine learning research. In this way, the motivation for ensuring that a machine learning-based system is just, fair, and intelligible is not only to meet ethical requirements, but also to make effective progress in the field itself. (shrink)

Recent developments in biogerontology—the study of the biology of ageing—suggest that it may eventually be possible to intervene in the human ageing process. This, in turn, offers the prospect of significantly postponing the onset of age-related diseases. The biogerontological project, however, has met with strong resistance, especially by deontologists. They consider the act of intervening in the ageing process impermissible on the grounds that it would (most probably) bring about an extended maximum lifespan—a state of affairs that they deem intrinsically (...) bad. In a bid to convince their deontological opponents of the permissibility of this act, proponents of biogerontology invoke an argument which is grounded in the doctrine of double effect. Surprisingly, their argument, which we refer to as the ‘double effect argument’, has gone unnoticed. This article exposes and critically evaluates this ‘double effect argument’. To this end, we first review a series of excerpts from the ethical debate on biogerontology in order to substantiate the presence of double effect reasoning. Next, we attempt to determine the role that the ‘double effect argument’ is meant to fulfil within this debate. Finally, we assess whether the act of intervening in ageing actually can be justified using double effect reasoning. (shrink)

Feminist health activists and medical researchers frequently disagree on the adequacy of the informed consent processes in clinical trials. I argue for an informed consent process that reflects the central importance of patient-participant autonomy. Such a standard may raise concerns for medical researchers about their capacity to control the quantity and quality of the information they disclose to potential participants. These difficulties might be addressed by presenting potential participants with differently sized disclosure packages.

Feminist health activists and medical researchers frequently disagree on the adequacy of the informed consent processes in clinical trials. I argue for an informed consent process that reflects the central importance of patient-participant autonomy. Such a standard may raise concerns for medical researchers about their capacity to control the quantity and quality of the information they disclose to potential participants. These difficulties might be addressed by presenting potential participants with differently sized disclosure packages.

Two hundred years after it was first published, Mary Shelley’s Frankenstein; or, the modern Prometheus remains relevant. This novel has endured because of its literary merits and because its themes lend themselves to analysis from multiple viewpoints. Scholars from many disciplines have examined this work in relation to controversial scientific research. In this paper, we review the academic literature where Frankenstein is used to discuss ethics, bioethics, science, technology and medicine. We searched the academic literature and carried out a content (...) analysis of articles discussing the novel and films derived from it, analyzing the findings qualitatively and quantitatively. We recorded the following variables: year and language of publication, whether it referred to the novel or to a film, the academic discipline in which it was published, and the topics addressed in the analysis. Our findings indicate that the scientific literature on Frankenstein focuses mainly on science and the personality of the scientist rather than on the creature the scientist created or ethical aspects of his research. The scientist’s responsibility is central to the ethical interest of Frankenstein; this issue entails both the motivation underlying the scientist’s acts and the consequences of these acts. (shrink)

Medical-legal partnerships (MLPs) — collaborative endeavors between health care clinicians and lawyers to more effectively address issues impacting health care — have proliferated over the past decade. The goal of this interdisciplinary approach is to improve the health outcomes and quality of life of patients and families, recognizing the many non-medical influences on health care and thus the value of an interdisciplinary team to enhance health. This article examines the unique, interrelated ethical issues that confront the clinical and legal partners (...) involved in MLPs. We contend that the ethical precepts of the clinical and legal professions should be seen as opportunities, not barriers, to further the interdisciplinary nature of MLPs. The commonalities in ethical approaches represent a potential bridge between legal and health care advocacy for patient/client well-being. Bioethics has a role to play in building and analyzing this bridge: bioethics may serve as a discourse and method to enhance collaboration by highlighting common ethical foundations and refocusing legal and clinical partners on their similar goals of service for patients/clients. This article explores this bridging role of bioethics, through a series of case studies. It concludes with recommendations to strengthen the collaborations. (shrink)

Medical-legal partnerships — collaborative endeavors between health care clinicians and lawyers to more effectively address issues impacting health care — have proliferated over the past decade. The goal of this interdisciplinary approach is to improve the health outcomes and quality of life of patients and families, recognizing the many non-medical influences on health care and thus the value of an interdisciplinary team to enhance health. There are currently over 180 MLPs at over 200 hospitals and health centers in the United (...) States, with increasing federal interest and potential legislative support of this model.This article examines the unique, interrelated, and often similar ethical issues that confront the clinical and legal partners involved in MLPs. We contend that the ethical precepts of the clinical and legal professions should be seen as opportunities, not barriers, to further the interdisciplinary nature of MLPs. (shrink)