Family carers of individual’s living with Huntington’s Disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of the definitive measure of quality of life for this group. The Huntington’s Disease Quality of Life Battery for carers (HDQoL-C) was expanded and then administered to an international sample of 1716 partners and family carers from 13 countries. In terms of the psychometric properties of the tool, exploratory analysis of half (...) of the sample, demonstrated good internal consistency and reliability. Some items on the full version did not meet psychometric thresholds and a short version (HDQoL-Cs) was developed based on more stringent criteria. Confirmatory Factor Analysis of the model structure showed a good fit for all Factors and, indicated that the HDQoL-C and HDQoL-Cs are psychometrically robust measures of quality of life. We found that carers who lived with and looked after their spouse/partner had reduced sense of coping, hope for the future and overall quality of life. Carers with children who were at risk, carried the gene or were symptomatic also had poorer quality of life outcomes. Findings indicated the HDQoL-C and HDQoL-Cs are valid in multiple languages and across varied cultures as measures of self-reported quality of life in family carers of individual’s living with HD. These psychometrically validated tools can aid and guide the implementation of therapeutic interventions to improve life quality in this population. (shrink)

As the expansion of the Internet and the digital formatting of all kinds of creative works move us further into the information age, intellectual property issues have become paramount. Computer programs costing thousands of research dollars are now copied in an instant. People who would recoil at the thought of stealing cars, computers, or VCRs regularly steal software or copy their favorite music from a friend's CD. Since the Web has no national boundaries, these issues are international concerns. The contributors-philosophers, (...) legal theorists, and business scholars, among others-address questions such as: Can abstract ideas be owned? How does the violation of intellectual property rights compare to the violation of physical property rights? Can computer software and other digital information be protected? And how should legal systems accommodate the ownership of intellectual property in an information age? Intellectual Property is a lively examination of these and other issues, and an invaluable resource for librarians, lawyers, businesspeople, and scholars. (shrink)

The COVID-19 pandemic has inspired numerous opportunities for telehealth implementation to meet diverse healthcare needs, including the use of virtual communication platforms to facilitate the growth of and access to clinical ethics consultation (CEC) services across the globe. Here we discuss the conceptualization and implementation of two different virtual CEC services that arose during the COVID-19 pandemic: the Clinical Ethics Malaysia COVID-19 Consultation Service and the Johns Hopkins Hospital Ethics Committee and Consultation Service. A common strength experienced by both platforms (...) during virtual delivery included improved ability for local practitioners to address consultation needs for patient populations otherwise unable to access CEC services in their respective locations. Additionally, virtual platforms allowed for enhanced collaboration and sharing of expertise among ethics consultants. Both contexts encountered numerous challenges related to patient care delivery during the pandemic. The use of virtual technologies resulted in decreased personalization of patient-provider communication. We discuss these challenges with respect to contextual differences specific to each service and setting, including differences in CEC needs, sociocultural norms, resource availability, populations served, consultation service visibility, healthcare infrastructure, and funding disparities. Through lessons learned from a health system in the United States and a national service in Malaysia, we provide key recommendations for health practitioners and clinical ethics consultants to leverage virtual communication platforms to mitigate existing inequities in patient care delivery and increase capacity for CEC globally. (shrink)

Increasingly the body is a possession that does not belong to us. It is bought and sold, bartered and stolen, marketed wholesale or in parts. The professions - especially reproductive medicine, transplant surgery, and bioethics but also journalism and other cultural specialists - have been pliant partners in this accelerating commodification of live and dead human organisms. Under the guise of healing or research, they have contributed to a new 'ethic of parts' for which the divisible body is severed from (...) the self, torn from the social fabric, and thrust into commercial transactions -- as organs, secretions, reproductive capacities, and tissues -- responding to the dictates of an incipiently global marketplace. Breaking with established approaches which prioritize the body as 'text', the chapters in this book examine not only images of the body-turned-merchandise but actually existing organisms considered at once as material entities, semi-magical tokens, symbolic vectors and founts of lived experience. The topics covered range from the cultural disposal and media treatment of corpses, the biopolitics of cells, sperm banks and eugenics, to the international trafficking of kidneys, the development of 'transplant tourism', to the idioms of corporeal exploitation among prizefighters as a limiting case of fleshly commodity. This insightful and arresting volume combines perspectives from anthropology, law, medicine, and sociology to offer compelling analyses of the concrete ways in which the body is made into a commodity and how its marketization in turn remakes social relations and cultural meanings. (shrink)

Ever since its inception, the theory of evolution has been reified into an “-ism”: Darwinism. While biologists today tend to shy away from the term in their research, the term is still actively used in the broader academic and societal contexts. What exactly is Darwinism, and how precisely are its various uses and abuses related to the scientific theory of evolution? Some call for limiting the meaning of the term “Darwinism” to its scientific context; others call for its abolition; yet (...) others claim the term refers to a myth-like story. In this paper we propose a conceptually grounded overview of the term. We show how the scientific dimension of Darwinism feeds into, and is influenced by, guises of Darwinism as a methodology and as an ethically and politically charged “worldview”. The full meaning of Darwinism, as well as how this meaning has changed over time, can only be understood through the complex interaction between these three dimensions. (shrink)

As research in the areas of unethical and ethical leadership grows, we note the need for more consideration of the normative assumptions in the development of constructs. Here, we focus on a subset of this literature, the “dark side” of supervisory behavior. We assert that, in the absence of a normative grounding, scholars have implicitly adopted different intuitive ethical criteria, which has contributed to confusion regarding unethical and ethical supervisory behaviors as well as the proliferation of overlapping terms and fragmentation (...) of research. Accordingly, we offer a definition of unethical supervision grounded in the normative theories and develop a framework of unethical supervision by analyzing the constructs associated with unethical supervision from a normative perspective. Our analysis suggests a heavy emphasis on violations of the right to dignity. We also note that utilitarianism and certain forms of rights as well as justice have been largely overlooked in the unethical supervision literature. We conclude by considering the implications of our conceptualization for theory on the antecedents and consequences of unethical supervision and by explaining how our approach extends to the larger literature on unethical and ethical leadership. (shrink)

Sandia National Laboratories, located in Albuquerque, New Mexico, was originally a part of Los Alamos Laboratory. In 1949, AT&T agreed to manage Sandia, which they did for the next 44 years. During those Cold War years, Sandia was the prime weapons engineering laboratory for Los Alamos and Lawrence Livermore. As such, it bore prime responsibility for designing and adapting nuclear weapons for the military services' delivery systems, and ensuring the safety and reliability of the stockpile. The Labs' history has been (...) unevenly documented, hindered by the secret nature of its work and the desire of management to maintain a low public profile. There have been three history programs at Sandia: a restricted history published internally in 1963; another history program in the early 1980s that resulted in a history of the Labs' first decade; and the current history program dating from the mid-1990s, which has published a general history and several monographs. This article discusses the challenges and problems inherent in documenting the history of a national weapons laboratory during the last 50 years. (shrink)

Dementia affects millions of people throughout the world. Thinking through Dementia offers a critique of the main models used to understand dementia-the biomedical, neuropsychological, and social constructionist. It discusses clinical issues and cases, together with philosophical work that might help us to better understand and treat this illness.

In this volume, the sixth in Blackwell's Great Debates in Philosophy series, Smart and Haldane discuss the case for and against religious belief. The debate is unusual in beginning with the negative side. After a short jointly authored introduction, there is a fairly extended presentation of the atheist position by Smart. Haldane then offers an equally extended defense of theism. The authors respond to one another in the same order, and the book concludes with a brief co-authored treatment of antirealism, (...) which both reject. The discussion is broad-ranging, in part reflecting the size of the topic. It addresses the existence of God and the problem of evil, along with related issues having to do with God's nature and his involvement with the world: necessary being, eternity versus sempiternity, the relation between divine sovereignty and human freedom, and the possibility of miracles. But there is also discussion of subjects having to do with revealed religion, such as the reliability of scripture, and the roles of faith and reason in the life of the believer. The fact that the book commences with the case for atheism also contributes to its scope, since without a specific version of theism on which to focus, Smart has to aim broadly. The result is that topics that might otherwise have been ignored—moral arguments, and Pascal's wager, to cite two—are at least broached, though not pursued. (shrink)

Does the content of a physically dangerous job affect the moral permissibility of hiring for that job? To what extent may employers consider costs in choosing workplace safety measures? Drawing on Kantian ethical theory, this article defends two strong ethical standards of workplace safety. First, the content of a hazardous job does indeed affect the moral permissibility of offering it. Unless employees need hazard pay to meet basic needs, it is permissible to offer a dangerous job only if prospective employees (...) have a reason other than hazard pay to choose this job instead of safer alternatives. Second, employers typically cannot justify omitting expensive safety measures by paying employees more, even if employees prefer higher pay to greater safety. Employers offering dangerous jobs must meet these two standards to avoid treating their employees merely as means. (shrink)

Though political philosophers often presuppose that coercive enforcement is fundamental to law, many legal philosophers have doubted this. This article explores doubts of two types. Some legal philosophers argue that given an adequate account of coercion and coerciveness, the enforcement of law in actual legal systems will generally not count as coercive. Others accept that actual legal systems enforce many laws coercively, but they deny that law has a necessary connection with coercion. There can be individual laws that lack coercive (...) sanctions, and it is at least conceptually possible for there to be a legal system that lacks coercive enforcement altogether. This article then examines why most political philosophers and some legal philosophers have been reluctant to treat the conceptual possibility of non-coercive law as significant. (shrink)

Successful tutoring depends in part on child tutors’ ability to recognise and interpret accurately signals of misunderstanding by their tutees. Age- and gender-related differences were investigated in a study which exposed 80 children to a video-recorded episode involving a target child receiving ambiguous instructions in her attempts to move a model car along a designated route on a playmat roadway from one destination to another. The results showed that explicit, general and facial modes of displaying puzzlement by the target child (...) were judged as equally powerful expressions of degree of puzzlement, but 8-10 year olds judged the target child as significantly more puzzled than did 7 year olds. Older children were also more likely to attribute the puzzlement of the target child to the ambiguous instructions than to her verbal or facial expression of puzzlement. Girls were generally more accurate than boys in judging facial expressions and less likely than boys to give wrong or alternatively ambiguous responses when given the opportunity to correct the video-recorded ambiguous instructions. The results throw some light on the developing sensitivities of boys and girls in recognising and attributing failures of understanding by other children. (shrink)

Recently, dramatic price increases by several pharmaceutical companies have provoked public outrage. These scandals raise questions both about how pharmaceutical firms should be regulated and about how pharmaceutical executives ethically ought to make pricing decisions when drug prices are largely unregulated. Though there is an extensive literature on the regulatory question, the ethical question has been largely unexplored. This article defends a Kantian approach to the ethics of pharmaceutical pricing in an unregulated market. To the extent possible, pharmaceutical companies must (...) price drugs so that those who genuinely need them can get them without financial ruin. This requirement is an ethical side constraint, like the moral prohibitions on deception and theft, that takes precedence over a business’s interest in maximizing profit. That said, the requirement’s application is sensitive to the need to recoup the costs of research and to produce a return that financially justifies the original investment. It may not be either feasible or desirable for government to attempt to enforce the ethical requirements concerning just pharmaceutical pricing. Either price regulation or subsidy could fulfill government’s obligation to protect patients from being objectionably vulnerable to pricing decisions by private companies. (shrink)

Dementia is an illness that raises important questions about our own attitudes to illness and aging. It also raises very important issues beyond the bounds of dementia to do with how we think of ourselves as people--fundamental questions about personal identity. Is the person with dementia the same person he or she was before? Is the individual with dementia a person at all? In a striking way, dementia seems to threaten the very existence of the self.LThis book brings together philosophers (...) and practitioners to explore the conceptual issues that arise in connection with this increasingly common illness. Drawing on a variety of philosophers such as Descartes, Lock, Hume, Wittgenstein, the authors explore the nature of personal identity in dementia. They also show how the lives and selfhood of people with dementia can be enhanced by attention to their psychological and spiritual environment. Throughout, the book conveys a strong ethical message, arguing in favor of treating people with dementia with all the dignity they deserve as human beings. The book covers a range of topics, stretching from talk of basic biology to talk of a spiritual understanding of people with dementia. Accessibly written by leading figures in psychiatry and philosophy, the book presents a unique and long overdue examination of an illness that features in so many of our lives. (shrink)

In this paper I consider, in connection with dementia, two views of the person. One view of the person is derived from Locke and Parfit. This tends to regard the person solely in terms of psychological states and his/her connections. The second view of the person is derived from a variety of thinkers. I have called it the situated-embodied-agent view of the person. This view, I suggest, more readily squares with the reality of clinical experience. It regards the person as (...) embedded in a history and culture. The human person is also an embodied agent. I contend that this view encourages a more appropriate approach towards the ethical issues that arise in dementia and towards people with dementia. (shrink)

Government’s use of imprisonment raises distinctive moral issues. Even if government has broad authority to make and to enforce law, government may not be entitled to use imprisonment as a punishment for all the criminal laws it is entitled to make. Indeed, there may be some serious crimes that it is wrong to punish with imprisonment, even if the conditions of imprisonment are humane and even if no adequate alternative punishments are available.

Power and authority in terms of the Ten Commandments (TCs) are discussed. The paper reviews the TCs in Christianity, Judaism, and Islam. The treatment and basis for power and authority in each religion are clarified. Implications of power and authority using the perspective of the TCs are provided. The paper suggests that in today's business environment people tend to be selective in identifying only with certain elements of the TCs that fit their interest and that the TCs should be viewed (...) as general moral guidelines. (shrink)

It might seem too obvious to start with this quotation:O day and night, but this is wondrous strange!And therefore as a stranger give it welcome.There are more things in heaven and earth, Horatio,Than are dreamt of in your philosophy.But then, I think it is obviously correct, as Professor Waterman suggests, that "There are more things in heaven and earth" than simply the application of the scientific method to medical practice. Perhaps there are two quick comments to make about the quotation. (...) First, in Shakespeare's time, "philosophy" would have included science; second, Shakespeare apparently contemplated using "our" rather than "your." So Hamlet is speaking to us, not just to Horatio, and he's speaking about our... (shrink)

When a business has competitors that break a burdensome law, is it morally required to obey this law, or may it break the law to avoid an unfair competitive disadvantage? Though this ethical question is pervasive in the business world, many non-skeptical theories of the obligation to obey the law cannot give it a clear answer. A broadly Kantian account, by contrast, can explain why businesspeople ought to obey laws of a certain type even under competitive pressure, namely laws that (...) play a direct role in defining rights to use physical or financial resources free from substantial interference. Businesspeople must obey these laws even at the cost of allowing their businesses to fail and even when the acts proscribed are mala prohibita. This argument for obeying the law in competitive contexts has limited scope. Considerations of fairness or self-preservation may justify violating laws of other types under competitive pressure. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Introduction:The Heat of Mild Cognitive ImpairmentJulian C. Hughes (bio)Keywordsaging, explanation, mild cognitive impairment, understanding, valuesDebates about mild cognitive impairment (MCI) are generating heat, albeit civilized heat. But under the surface, as I think the papers in this special issue demonstrate, the civilized heat comes from a good deal of passion. One way in which philosophy can contribute to the debate is by making plain the sources of this (...) passion, so that the motivating forces are clearer.One motivating force is this: There will be people who do not have dementia but who have symptoms or signs that might predict dementia, which cause them concern, whom we might help by early intervention. The intervention might involve advice and support, or it might involve some form of drug treatment; and in the utopia of our dreams, it might involve prevention. All of this is very motivating for clinical scientists. It also offers a laudable motivation to pharmaceutical companies, who simultaneously must have regard to the possibility of profits for their shareholders.Here, however, is an alternative motivation: The effects of aging must not be ignored if help can be given, but older people must not be stigmatized by a medical process that thrusts disabling labels on them. People age, but they age differently, and it is better to recognize difference, both from a biological and from a philosophical perspective. Thus, a passionate commitment to the cause of individual agency in old age and a desire for authentic autonomy for older people provide strong motivation too.At root, then, the conflicting passions over MCI reflect the age-old struggle in the philosophy of psychiatry between the natural sciences (Naturwissenschaften) and the human or cultural sciences (Geisteswissenschaften): the tension is between a tendency to approach the problem with the aim of eliciting a scientific explanation and a tendency to try to achieve a human and cultural understanding of the phenomena (Phillips 2004). So, although MCI can be regarded as an explanatory diagnostic entity with some predictive value, it can also be regarded as a label that might cause harm or as a human phenomenon that requires understanding. Furthermore, MCI raises ontological questions about the nature of disease entities. And there is a wider issue as well about how aging itself should be regarded.From a biological perspective, it turns out there is no clear cutoff between what is normal and what [End Page 1] is not. Hence, in a number of ways, values seem to be as important as facts (Sadler 2005). Perhaps philosophy should content itself with saying no more than this: MCI ought not to be considered or debated as if it lies outside the realm of evaluative judgment. The very possibility of its existence as a clinical entity is a matter worthy of moral and social discourse.The direction of thought indicated here and in the papers that follow, however, is more radical than the easily won point that the "diagnosis" of MCI is not value free. On the back of the biological point, that there is a continuum between physiological and pathological aging, is the broader philosophical point that aging can neither be understood solely in terms of physiology nor in terms of pathology, nor even in terms of both. Ageing represents, inter alia, a social and cultural phenomenon manifest in the context of particular psychological and spiritual responses to a mixture of physiological adaptations and pathological predispositions. Without the broader picture, we tend to characterize old age, as Michael Bavidge has suggested elsewhere, in terms of deteriorations: "We should think of old age as offering alternative rather than impaired ways of experiencing life" (2006, 49). The difficulty is that any diagnosis seems to suggest impairment in one form or another. The radical suggestion, therefore, might be to commend descriptions that encourage shared understanding over and above the giving of names and labels.In a brief critique of the scientific approach to "banal memory disorders and MCI", Jean-Marie Léger, like Bavidge, regrets the extent to which people with cognitive impairment "are described in terms of what they have lost, with no regard for the wealth of faculties which are still present." Léger... (shrink)

In response to Frederick Schauer's book The Force of Law, I argue that the available evidence indicates that non-coercive law could influence many people's behavior. It may sometimes be best to forgo coercive enforcement of an important law.

ABSTRACT Digital mental health interventions have emerged as a promising means of expanding access to mental healthcare. Prospective participants reporting severe symptoms or suicidal ideation are often excluded from DMHI trials and may struggle to access alternative treatments. However, evidence suggests that DMHIs are efficacious for people reporting these characteristics. We suggest that there are risks to both including and excluding people from DMHI trials, and we urge researchers to ensure that their eligibility criteria are designed in an evidence-based and (...) ethically conscious manner. We also make specific recommendations for those working in various other capacities within the academic community. (shrink)

Many assume that whenever government is entitled to make a law, it is entitled to enforce that law coercively. I argue that the justification of legal authority and the justification of governmental coercion come apart. Both in ideal theory and in actual human societies, governments are sometimes entitled to make laws that they are not entitled to enforce coercively.

It is widely agreed that foreign sponsors of research in low- and middle-income countries (LMICs) are morally required to ensure that their research benefits the broader host community. There is no agreement, however, about how much benefit or what type of benefit research sponsors must provide, nor is there agreement about what group of people is entitled to benefit. To settle these questions, it is necessary to examine why research sponsors have an obligation to benefit the broader host community, not (...) only their subjects. Justifying this claim is not straightforward. There are three justifications for an obligation to benefit host communities that each apply to some research, but not to all. Each requires a different amount of benefit, and each requires benefit to be directed toward a different group. If research involves significant net risk to LMIC subjects, research must provide adequate benefit to people in LMICs to avoid an unjustified appeal to subjects’ altruism. If research places significant burdens on public resources, research must provide fair compensation to the community whose public resources are burdened. If research is for profit, research sponsors must contribute adequately to the upkeep of public goods from which they benefit in order to avoid the wrong of free-riding, even if their use of these public goods is not burdensome. (shrink)