Background: Dignity, an abstract and complex concept, is an essential part of humanity and an underlying guiding principle in healthcare. Previous literature indicates dignity is compromised in people with dementia (PwD), but those PwD maintain the capacity to live with dignity with appropriate external support. Alzheimer’s disease and related dementias (ADRDs) lead to progressive functional decline and increased vulnerability and dependence, leading to heightened risks of PwD receiving inappropriate or insufficient care that diminishes dignity. Considering the (...) increased disease prevalence and the continuously escalating costs of dementia care, establishing a productive value-based guideline may prevent suffering, maximize dignity, and thus promote quality of life (QoL). Aim: The goal of this project is to identify actionable targets for integrating dignity harmoniously and practically into care planning and management for PwD. Research Design: We conducted a concept analysis using Walker and Avant’s eight-step process. A comprehensive literature search was conducted (PubMed and CINAHL) with the keywords “dignity,” “dementia,” “Alzheimer’s disease,” and “dementia care.” Results: A total of 42 out of 4910 publications were included. The concept of dignity in PwD is operationalized as the promotion of worthiness and the accordance of respect that allows the presence and expression of a person’s sense of self, regardless of physical, mental, or cognitive health. The concept has two subdimensions: absolute dignity which encompasses the inherent self and relative dignity characterized by its dynamic reflective nature. Worthiness and respect are the two main attributes, while autonomy is an underlying component of dignity. Specific antecedents of dignity in PwD are empowerment, non-maleficence, and adaptive environmental scaffolding. As a consequence of facilitating dignity in PwD, QoL may be enhanced. Conclusion: As a foundational and necessary humanistic value, incorporating dignity into dementia care can lead to efficient and effective care that optimizes QoL in PwD throughout their disease progression. (shrink)

Publicity for (and laterly increased economic stringency which makes more likely), failures of care in the NHS engender concern for care quality while its assurance remains the subject of a fragmented and unhelpful literature. A selective attempt is made to examine some underlying principles by posing and answering three questions. What is the quality of care? What basic principles must be followed in defining `standards'? How then may quality be assured? Any definition of care must be multi-faceted and in (...) common use pervaded with the patients' pre-occupation with a search for cures. Nevertheless, it is argued that there are gains in restricting the technical use of the term `care' to those systematic processes of health services and their culture which impinge on the personal experience of patients and which fashion their response. In contemporary society care ought to be designed to restore and enhance the independence, dignity and choice of the patient. Although there is a contrary tendency to abandon problems of care to the professionals, standards for care should be judged ultimately not from the specialised professional but from the viewpoint of lay people whose behaviour in the outside world fashions those norms by which independence, dignity and choice are judged. A number of difficulties in identifying and securing improvements in care are discussed. In particular, it is argued that such is the interdependence of the style of management of an institution and the style of care it provides that enforcement of high quality care is likley to be a contradiction in terms. Only trained and sensitive staff can act intuitively and pre-emptively to prevent even incipient deterioration in care. They cannot carefully foster at all times the independence and dignity of their patients unless they are treated in a similar way as professional employees. As an initial step in improving the quality of care a simple start is urged upon implementing an inventory of checks. These are designed to establish the identification and operation of health care policies and practices which give appropriate recognition to the characteristics of care that patients and public expect, coming as they do from a lay rather than professional world. The article concludes with an appropriate inventory of questions to be put to professionals by those laymen who are increasingly imported into health care management through community representation (in CHCs) and staff participation (in joint consultation) and whose interest and concern should be harnessed appropriately. (shrink)

: Gill and Sade, in the preceding article in this issue of the Kennedy Institute of Ethics Journal, argue that living individuals should be free from legal constraints against selling their organs. The present commentary responds to several of their claims. It explains why an analogy between kidneys and blood fails; why, as a matter of public policy, we prohibit the sale of human solid organs, yet allow the sale of blood; and why their attack on Kant's putative argument against (...) the sale of human body parts is misplaced. Finally, it rejects the claim that the state is entitled to interfere with the actions of individuals only if such actions would harm others. We draw certain lines grounded in what Rawls has termed "public reason" beyond which we do not give effect to the autonomous self-regarding decisions of individuals. Public resistance to the sale of human body parts, no matter how voluntary or well informed, is grounded in the conviction that such a practice would diminish human dignity and our sense of solidarity. A system of organ donation, in contrast, conveys our respect for persons and honors our common humanity. (shrink)

In describing his seven and a half years as a prisoner of war in North Vietnam, the late Vice Admiral James B. Stockdale has said: "In that atmosphere of death and hopelessness, stripped of the niceties, the amenities of civilization, my ideas on life and leadership crystallized." Despite torture, intimidation, and isolation, Stockdale fulfilled his duties as senior officer among the prisoners with intelligence and courage, defining rules of conduct and maintaining morale. He often described the intense pressures of that (...) situation as a "melting" experience, in which preconceived feelings, fears, and bias melt as one comes to realize that, under the gun, you must grow or fail—or, in some cases, grow or die. This collection of his essays and speeches from the 1980s and 1990s reinforces how that experience formed a lifelong basis for his philosophical thought on issues of character, leadership, integrity, personal and public virtue, and ethics. The selections in this volume all reflect, in one way or another, a central theme: how man can rise with dignity to prevail in the face of adversity. (shrink)

This article discusses the importance of ‘public conscience’ in B. R. Ambedkar’s political thought. Ambedkar consistently defended public conscience as a democratic value in his writings and speeches. Public conscience referred to collective responsibility, social justice and the public deliberation of what constitutes the social good. Ambedkar consistently expressed the unequivocal belief that public conscience would bring about a moral transformation in Indian society through a collective ethical stance against all forms of social oppression. He conceptualized public conscience as a (...) method by which a democratic and ethical Indian society could come about and flourish. This article interrogates his ideas concerning public conscience through a detailed reading of his works, focusing particularly on his 1943 speech, Ranade, Gandhi and Jinnah. (shrink)

Dr. B. R. Ambedkar is one of the most eminent intellectual figures of modern India. The present year is being celebrated as 125th Birth Anniversary of Dr. B. R. Ambedkar. Educationist and humanist from all over the world are celebrating 125th Birth Anniversary of Dr. B. R. Ambedkar by organizing various events and programmes. In this regard the Centre for Positive Philosophy and Interdiscipinary Studies (CPPIS) Pehowa (Kurukshetra) took an initiative to be a part of this mega event by organizing (...) an national level esssay competition for students, publication of books, posters and research journals on Dr. B.R. Ambedkar. Dr. B.R. Ambedkar’s ideas, writings and outlook could well be characterized as belonging to that trend of thought called Social Humanism. He developed a socio-ethical philosophy and steadfastly stood for human dignity and freedom, socio-economic justice, material prosperity and spiritual discipline. He showed the enlightening path for Indian society via his ideals of freedom, equality and fraternity and made India a democratic country. The complete works of Dr. B.R. Ambedkar published by the Governemtn of Maharastra and it has taken about 25 years to complete this initiative in 21 Volumes with the name, “Dr. Babasaheb Ambedkar: Writing and Speeches” and covers 14000 pages. In the words of Trilochan Sing, “Above all, Dr. Ambedkar is a philosopher. Those who read his books cannot be failed to be impressed with steadffastness with which he pursues truth; and only those who have dispassionately read his books can frame true estimate of the greatness of the man”. These 21 Volumes includes books published by Dr. B.R. Ambedkar himself and unpublished writings and speaches too. The present volume entitled “Dr. B.R. Ambedkar: The Maker of Modern India” contains 12 research papers on the different aspects of philosophy of Dr. B.R. Ambedkar written by academicians from different branches of knowledge. You can find a variety of dialogues and concen about the theme of the book here. We are not defending this book as a highly an intellectual work but a smaller step to know the various aspects of this great personality and is a start to study his vast wisdom. You suggestions and comments are welcome to its first hand review version. (shrink)

“Dissecting Bioethics,” edited by Tuija Takala and Matti Häyry, welcomes contributions on the conceptual and theoretical dimensions of bioethics.The section is dedicated to the idea that words defined by bioethicists and others should not be allowed to imprison people's actual concerns, emotions, and thoughts. Papers that expose the many meanings of a concept, describe the different readings of a moral doctrine, or provide an alternative angle to seemingly self-evident issues are therefore particularly appreciated.The themes covered in the section so far (...) include dignity, naturalness, public interest, community, disability, autonomy, parity of reasoning, symbolic appeals, and toleration.All submitted papers are peer reviewed. To submit a paper or to discuss a suitable topic, contact Tuija Takala at [email protected]. (shrink)

Genes are functional cell segments of DNA within an organism, as well as basic physical units of biological inheritance, which have consequences for human dignity and public interest. Genes and genetic material (DNA strands of nucleotides, genetically altered plants and animals e.g., see Appendix B) are patentable. In the US and around the globe, governments grant genetic patents for new, non-obvious, and useful gene inventions. A wide range of interest groups such as religious leaders, scientists, biotech pharmaceuticals, medical practitioners, (...) health care providers, venture capitalists, medical patients and persons have interests in defining what is subject to patents. Yet, it is at least questionable that genetic inventions, and the ownership of discoveries of gene mutations leading to possible diseases, should be subject to influence by interest groups. Although some genes (cDNA) are currently legally patentable, the question in this examination is whether gene patents should be legally and morally justified. In this work I examine whether gene patents should legally and morally be justified, given the principles of biomedical ethics such as human Beneficence /Autonomy and Justice. I argue that gene patenting is not justifiable, and I consider what can be done to create a system that delivers access to genetic information in the current genetic Intellectual Patent system. This interdisciplinary work is more complex than whether bio-science researchers and corporate entities should hold gene patents, or differentiating the legal question of whether genes are an invention or a discovery in the human genome. Mere responses to these questions would not ultimately solve the genetic justice problem. The justification for genetic appropriation is more complexity, since it is grounded in axiological claims about human dignity and public interest set in an ever changing biomedical/biogenetic technology. To address this complexity, I will draw upon the ideas of “the capability approach” to genetic justice found in the work of Nussbaum and Sen. This work is an interdisciplinary examination of the proper appropriation of natural genetic material and its impact on human dignity. It is argued that genetic material and information should be accessible to all, via heath care, for example. We must look to new ways to achieve genetic justice that promote human flourishing as a public good. (shrink)

Many working in bioethics today are engaging in forms of normative interpretation concerning the meaningful contexts of relational agency and institutional structures of power. Using the framework of relational bioethics, this article focuses on two significant social practices that are significant for health policy and public health: the practices of solidarity and the practices of care. The main argument is that the affirming recognition of, and caring attention paid to, persons as moral subjects can politically motivate a society in three (...) respects. The recognition of solidarity and the attention of care can prompt progressive change toward a democratic willingness: (a) to provide for equal respect for rights and dignity; (b) to provide the social resources and services needed for just health and well‐being; and (c) to focus its creativity and wealth on the actualization of potential flourishing of each and all. Solidarity is discussed as a morally developmental stance that moves from standing up for another, standing up with another, and standing up as another. Care is discussed as a morally developmental stance that moves from the attentive rehabilitation of another, attentive companionship with and for another, and attentive commitment to another. (shrink)

This essay analyzes the concept of public trust in science and offers some guidance for ethicists, scientists, and policymakers who use this idea defend ethical rules or policies pertaining to the conduct of research. While the notion that public trusts science makes sense in the abstract, it may not be sufficiently focused to support the various rules and policies that authors have tried to derive from it, because the public is not a uniform body with a common set of interests. (...) Well-focused arguments that use public trust to support rules or policies for the conduct of research should specify (a) which public is being referred to (e.g. the general public or a specific public, such as a particular community or group); (b) what this public expects from scientists; (c) how the rule or policy will ensure that these expectations are met; and (d) why is it important to meet these expectations. (shrink)

In 2007, the Ethics and Governance Council of the UK Biobank commissioned a Report on ‘Concepts of Public Good and Pubic Interest in Access Policies’. This study considered the Biobank’s role as a ‘public good’ in respect to supporting and promoting health throughout society. However, the conditions under which access by third parties to UK Biobank are justified in the public interest have not been well considered. In this article, I propose to analyse the conditions that should allow such access. (...) My argument develops UK Biobank’s function as a ‘public good’ and in terms of its responsibilities as a public health institution; both to protect the rights of the participants and in having a role in reinforcing public goals. Although these two tasks may conflict, it is possible that resolute opposition to some third-party access demands—if properly justified in terms of a public interest—will be damaging to, rather than protective of, participants’ rights. To illustrate my argument, I consider the appropriate response to an extraordinary public emergency , such as a serious criminal investigation or disaster response, in terms of an ethical access policy. (shrink)

In 2035 global egg demand will have risen 50% from 1985. Because we are not able to tell in the egg whether it will become a male or female chick, billons of one day-old male chicks will be killed. International research initiatives are underway in this area, and governments encourage the development of an alternative with the goal of eliminating the culling of day-old male chicks. The Netherlands holds an exceptional position in the European egg trade, but is also the (...) only country in the European Union where the downside of the egg sector, the practice of killing day-old male chicks, is a recurrent subject of societal debate. ‘Preventing the killing of young animals’ and ‘in ovo sex determination’ are the two alternative approaches available to solve this problem. It is clear that both approaches solve the problem of killing day-old male chicks, either by keeping them alive or by preventing them from living, but they also raise a lot of new animal welfare-related dilemmas. A thorough analysis was undertaken of these dilemmas and the results are presented in this article. The analysis resulted in an ethical framework based on the two main approaches in bioethics: a consequentialist approach and a deontological approach. This ethical framework was used to develop an online survey administered to ascertain Dutch public opinion about these alternative approaches. The results show that neither alternative will be fully accepted, or accepted by more than half of Dutch society. However, the survey does provide an insight into the motives that are important for people’s choice: food safety and a good treatment of animals. Irrespective of the approach chosen, these values should be safeguarded and communicated clearly. (shrink)

Those objecting to human DNA patenting frequently do so on the grounds that the practice violates or threatens human dignity. For example, from 1993 to 1994, more than thirty organizations representing indigenous peoples approved formal declarations objecting to the National Institutes of Health's bid to patent viral DNA taken from subjects in Papua New Guinea and the Solomon Islands. Although these were not patents on human DNA, the organizations argued that the patents could harm and exploit indigenous peoples and (...) violate their cultural values. NIH eventually dropped one of its patent applications.On May 18, 1995, 180 religious leaders, led by biotechnology critic Jeremy Rifkin, held a press conference objecting to DNA patenting in Washington, D.C. In their “Joint Appeal against Human and Animal Patenting,” these leaders decried any attempt to patent nature. Some of the more outspoken members of the Joint Appeal likened DNA patenting to slavery, while others objected to treating human beings as marketable commodities. In his recent book, The Biotech Century, Rifkin rehashed the objections to DNA patenting voiced by members of the Joint Appeal. (shrink)

Social scientists have begun elucidating the variables that influence public trust in science, yet little is known about hype in biotechnology and its effects on public trust. Many scholars claim that hyping biotechnology results in a loss of public trust, and possibly public enthusiasm or support for science, because public expectations of the biotechnological promises will be unmet. We argue for the need for empirical research that examines the relationships between hype, public trust, and public enthusiasm/support. We discuss the complexities (...) in designing empirical studies that provide evidence for a causal link between hype, public trust, and public enthusiasm/support, but also illustrate how this may be remedied. Further empirical research on hype and public trust is needed in order to improve public communication of science and to design evidence-based education on the responsible conduct of research for scientists. We conclude that conceptual arguments made on hype and public trust must be nuanced to reflect our current understanding of this relationship. (shrink)

Mill contends that the fullest publicity and freedom of discussion is essential for all citizens to share in political freedom. Previous commentators have focused on Mill's strictures against censorship; they have paid little attention to his understanding of how freedom of discussion and political will formation are mediated in the public sphere by the distribution of social power in civil society, particularly control of the means of communication. This article shows that Mill's account of the sociology and political economy (...) of how public opinion forms is central to his understanding of freedom of discussion and democratic political freedom. (shrink)

Increased productivity may have negative impacts on farm animal welfare in modern animal production systems. Efficiency gains in production are primarily thought to be due to the intensification of production, and this has been associated with an increased incidence of production diseases, which can negatively impact upon FAW. While there is a considerable body of research into consumer attitudes towards FAW, the extent to which this relates specifically to a reduction in production diseases in intensive systems, and whether the increased (...) incidence of diseases represents a barrier to consumer acceptance of their increased use, requires further investigation. Therefore a systematic review of public attitudes towards FAW was conducted, with a specific focus on production diseases in intensive systems. Four databases were searched to identify relevant studies. A screening process, using a set of pre-determined inclusion criteria, identified 80 studies, with the strength of evidence and uncertainty assessed for each. A thematic analysis led to the identification of 6 overarching themes constructed from 15 subthemes. The results demonstrate that the public are concerned about FAW in modern production systems. Concern varied in relation to age, gender, education and familiarity with farming. Naturalness and humane treatment were central to what was considered good welfare. An evidence gap was highlighted in relation to attitudes towards specific production diseases, with no studies specifically addressing this. However, the prophylactic use of antibiotics was identified as a concern. A number of dissonance strategies were adopted by consumers to enable guilt free meat consumption. (shrink)

This chapter explores how what is dismissed as “trans activism” is often public philosophy. It considers how so‐called “public philosophy” on trans issues often does a substantially worse job of living up to the name. The chapter discusses how the dichotomy between “trans activism” and “public philosophy” provides a pretext for marginalizing trans voices. To draw on Black feminist philosophical thought, lived experience is a criterion for knowledge of the needs of marginalized people. Like other marginalized communities, trans communities have (...) encountered many areas in which hermeneutical liberation is needed. Public philosophy as trans activism is often systemically and systematically ignored or willfully misinterpreted as being biased and motivated by self‐interest, whereas anti‐trans (public) philosophy is seen as asking the important questions. (shrink)

This paper presents a novel perspective on an evolving policy area. The UK’s withdrawal from the EU has led to the creation of a new Agriculture Act and proposals for significant changes to the way farming subsidies are structured in England. Underpinned by a ‘public money for public goods’ approach, where public goods are those outputs from the farm system which are not rewarded by markets, yet which provide benefits to many members of society. New schemes include the Animal Health (...) and Welfare Pathway, where certain aspects of farm animal health and welfare (FAHW) will be subsidised through government support, raising a much-debated issue in the literature regarding the representation of FAHW as a public good. For policy to be responsive to societal demands and accountable to citizens, understanding public attitudes and preferences towards FAHW as a public good, and how the public might prioritise this in relation to a wider suite of environmental public goods from farming, is important. An online survey of 521 members of the UK public was conducted and analysed with descriptive statistics and ordered logistic regression. Findings reveal low awareness of the changing agricultural policy context, but strong support for public money being used to provide public goods, particularly for FAHW. Findings also indicate a need for more effective public communication of farming and FAHW issues from farming stakeholders to ensure public policy in this domain is responsive and accountable to its citizens. Further work is needed to inform future debates and engagement surrounding FAHW, including through which combination of funding mechanisms (public or private) it is provided. (shrink)

Countries, companies and farming communities are increasingly involved in issues of sharing and protecting plant genetic resources, knowledge and technologies. Intellectual Property Rights and Access and Benefit-Sharing policies currently regulate the transfer and usage of much of this genetic material, information and related production, which is employed in multiple research projects involving public research institutes. Strikingly, not much is known about how these institutes deal with the transfer and usage regulations. And what, furthermore, are their responsibilities while serving a civil (...) society in which there is such a range of diverging interests in and opinions about such regulations? In order to shed more light on these questions, two public research institutes will here be studied, the International Potato Centre in Peru and Wageningen University & Research Centre in the Netherlands. These institutes are both heavily involved in research into genetic resources, knowledge and technologies related to the potato, and work together with a wide spectrum of stakeholders that have a direct interest in the sharing and/or protection of these resources. The two institutes are continuously weighing up the various stakeholder interests in their attempts to strike a balance between policies geared towards sharing and those aimed at protection. It will be argued that public research institutes must dare to share, and that they need to develop new ways of sharing and protecting in order to adhere to their mission and best serve the public interest. (shrink)

This letter responds to the article “The Social Risks of Science,” by Jonathan Herington and Scott Tanona, published in the November‐December 2020 issue of the Hastings Center Report.

Public health ethics is a relatively new academic field. Crucially, it is distinguished from traditional medical ethics by its focus on populations rather than individuals. Still, the ethics of public health cannot be perceived completely detached from the ethics of individuals, as populations are made up of individuals. One issue that clearly falls within the intersection of a population- and an individual based perspective on ethics is resource allocation. Resource allocation takes place at various stages within the organisation of healthcare, (...) i.e. at the micro-, meso- and macro level [3]. Resources are almost always limited, with the consequence that some healthcare is prioritised while other care is rationed. In this manner, resource allocation creates winners and losers; those who get the best care available, those who do not receive the best care and those who do not receive care at all. It seems prudent to assume that any adequate public health ethics involved in population-based decision-making will have to address all ethical aspects of resource allocation, all the way from the macrolevel policy-making process to the micro-level implementation where it affects specific and identifiable individuals. More specifically, such an ethics must be able to deal with the ethical tensions arising between population-based concerns framing the policy design process, and individual concerns in the realisation of the resource allocations. In the following, I will identify an inherent ethical tension involved in ‘legitimate resource allocation’, which is related to the challenge of meeting the ethical requirements from a population- and an individual based perspective at the same time. (shrink)

Two years ago in two articles in a thematic issue of this journal the three of us engaged in a critique of principlism. In a subsequent issue, B. Andrew Lustig defended aspects of principlism we had criticized and argued against our own account of morality. Our reply to Lustig's critique is also in two parts, corresponding with his own. Our first part shows how Lustig's criticisms are seriously misdirected. Our second and philosophically more important part picks up on Lustig's challenge (...) to us to show that our account of morality is more adequate than principlism. In particular we show that recognition of morality as public and systematic enables us to provide a far better description of morality than does principlism. This explains why we adopt the label “Dartmouth Descriptivism.”. (shrink)

The public health measures implemented in response to the COVID-19 pandemic have resulted in a substantially increased shared reliance on private infrastructure and digital services in areas such as healthcare, education, retail, and the workplace. This development has (i) granted a number of private actors significant (informational) power, and (ii) given rise to a range of digital surveillance practices incidental to the pandemic itself. In this paper, we reflect on these secondary consequences of the pandemic and observe that, even though (...) collateral data disclosure and additional activity monitoring appears to have been generally socially accepted as inevitable consequences of the pandemic, part and parcel of a larger conglomeration of emergency compromises, these increased surveillance practices were not directly justified by appeals to solidarity and public health in the same way that the instigating public health measures were. Based on this observation, and given the increased reliance on private actors for maintaining the digital space, we argue that governments have a duty to (i) seek and ensure that there are justifications for collateral data disclosure and activity monitoring by private actors in the context of (future) public health emergencies like the COVID-19 pandemic, and (ii) regulate and provide accountability mechanisms for and oversight over these private surveillance practices on par with governmental essential services that engage in surveillance activities. (shrink)

Rape, traditionally a spoil of war, became a weapon of war in the ethnic cleansing campaign in Bosnia. The ICTY Kunarac court responded by transforming wartime rape from an ignored crime into a crime against humanity. In its judgment, the court argued that the rapists violated the Muslim women’s right to sexual self-determination. Announcing this right to sexual integrity, the court transformed women’s vulnerability from an invitation to abuse into a mark of human dignity. This close reading of the (...) trial, guided by the phenomenological themes of the lived body and ambiguity, feminist critiques of the autonomous subject and the liberal sexual/social contract, critical legal theory assessments of human rights law and institutions, and psychoanalytic analyses of the politics of desire, argues that the court, by validating women’s epistemic authority (their right to establish the meaning of their experience of rape) and affirming the dignity of the vulnerable body (thereby dethroning the autonomous body as the embodiment of dignity), shows us that human rights instruments can be used to combat the epidemic of wartime rape if they are read as de-legitimating the authority of the masculine autonomous subject and the gender codes it anchors. (shrink)