Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

Advance care directives for health care have been promoted as a way to improve end-of-life decision making. These documents allow a patient to state, in advance of incapacity, the types of medical treatments they would like to receive, to name a surrogate to make those decisions, or to do both. Although studies have shown that both physicians and patients generally have positive attitudes about the use of these documents, relatively few individuals have actually completed one.What underlies this discrepancy between attitudes (...) and behavior with regard to advance care directives? One obvious explanation is lack of access. Emanuel et al. estimated that approximately 90 percent of the population desire an advance care directive, and they pointed to access as the major barrier. Yet interventions that increase accessibility have typically failed to yield more than a 20 percent completion rate. Thus, it appears that access is not the sole determinant of advance care directive completion. (shrink)

A major shift has taken place since the 1960s concerning disclosure to patients that they have a diagnosis of cancer and that their disease is considered terminal. Full disclosure is now considered the patient's right in the United States. However, there remain many countries in which nondisclosure is still the norm. When patients from those countries are diagnosed with cancer in America, differences in attitudes and expectations can cause conflict and misunderstanding.

... PREFACE Paul Gochet (Liege) "[...] une entite physique ne peut etre envisagee que comme une sorte de concretisation, de consolidation locale dans un ...

It is widely agreed that fiction is necessarily incomplete, but some recent work postulates the existence of universal fictions—stories according to which everything is true. Building such a story is supposedly straightforward: authors can either assert that everything is true in their story, define a complement function that does the assertoric work for them, or, most compellingly, write a story combining a contradiction with the principle of explosion. The case for universal fictions thus turns on the intuitive priority we assign (...) to the law of non-contradiction. My goal in this paper is to show that our critical and reflective literary practices set constraints on story-telling which preclude universal fictions. I will raise four stumbling blocks for universal fictionalists: the gap between saying and making true, our actual interpretive reactions to story-level contradictions, the criteria we accept for what counts as a story in our literary practices, and the undesirability of the universal fictionalist’s closure principles. (shrink)

The premise that every work belongs to an art-kind has recently inspired a kind-centred approach to theories of art. Kind-centred analyses posit that we should abandon the project of giving a general theory of art and focus instead on giving theories of the arts. The main difficulty, however, is to explain what makes a given kind an art-kind in the first place. Kind-centred theorists have passed this buck on to appreciative practices, but this move proves unsatisfactory. I argue that the (...) root of this dissatisfaction stems not from the act of kicking the can down the road, but from not kicking it far enough. The missing ingredient, I argue, is a notion of convention which does the work of marking the difference between art and non-art for a given physical medium. (shrink)

It is widely believed, among philosophers of literature, that imagining contradictions is as easy as telling or reading a story with contradictory content. Italo Calvino’s The Nonexistent Knight, for instance, concerns a knight who performs many brave deeds, but who does not exist. Anything at all, they argue, can be true in a story, including contradictions and other impossibilia. While most will readily concede that we cannot objectually imagine contradictions, they nevertheless insist that we can propositionally imagine them, and regularly (...) do, simply by entertaining a text which prompts us to do so. I argue that this narrative does not bear scrutiny for two main reasons. First, because propositional imagining is beside the point, where truth in fiction is concerned; evaluating truth in fiction engages the cognitive architecture in ways that prohibit the mobilization of merely propositional imagination to that end. And second, because it is not obvious, given the strategies usually suggested, that we ever propositionally imagine contradictions in the first place—in fact, it seems we go out of our way to avoid directly imagining them. (shrink)

Schopenhauer’s invective is legendary among philosophers, and is unmatched in the historical canon. But these complaints are themselves worthy of careful consideration: they are rooted in Schopenhauer’s philosophy of language, which itself reflects the structure of his metaphysics. This short chapter argues that Schopenhauer’s vitriol rewards philosophical attention; not because it expresses his critical take on Fichte, Hegel, Herbart, Schelling, and Schleiermacher, but because it neatly illustrates his philosophy of language. Schopenhauer’s epithets are not merely spiteful slurs; instead, they reflect (...) deep-seated theoretical and methodological commitments to transparency of exposition. (shrink)

Michel Weber, Éléments de routine ayurvédique. Autonomie, rituel et ascèse, Les Éditions Chromatika, 2021. (978-2-930517-82-7 ; pdf 978-2-930517-83-4 ; 104 pp., 14€) -/- L’Ayurvéda propose une philosophie de vie qui articule un vaste système métaphysique (une cosmologie théorique) avec une visée thérapeutique profonde (une anthropologie pratique). -/- À la croisée de la théorie et de la pratique, on trouve la routine (« dinacharya ») dont le but est de susciter l’individuation et la solidarité, c’est-à-dire l’autonomie (de chacun) respectueuse de (...) la communauté (de tous). Ce faisant, elle constitue une ascèse dont l’efficacité a été longuement éprouvée et rarement égalée. (shrink)

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and (...) Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

The COVID-19 pandemic has both exposed and created deep rifts in society. It has thrust us into deep ethical thinking to help justify the difficult decisions many will be called upon to make and to protect from decisions that lack ethical underpinnings. This paper aims to highlight ethical issues in six different areas of life highlighting the enormity of the task we are faced with globally. In the context of COVID-19, we consider health inequity, dilemmas in triage and allocation of (...) scarce resources, ethical issues associated with research, ethical considerations relating to tracing apps, and exit strategies such as immunity passports and COVID-19 vaccines. Finally, we consider environmental issues in light of COVID-19. The paper also offers some ethical reflection on these areas as many parts of the world contemplate the recovery phase. (shrink)

This comprehensively updated and expanded revision of the successful second edition continues to provide detailed coverage of the ever-growing range of research topics in vision. In Part I, the treatment of visual physiology has been extensively revised with an updated account of retinal processing, a new section explaining the principles of spatial and temporal filtering which underlie discussions in later chapters, and an up-to-date account of the primate visual pathway. Part II contains four largely new chapters which cover recent psychophysical (...) evidence and computational model of early vision: edge detection, perceptual grouping, depth perception, and motion perception. The models discussed are extensively integrated with physiological evidence. All other chapters in Parts II, III, and IV have also been thoroughly updated. (shrink)

‘Philosophical dialogue’ indicates both a form of philosophical inquiry and its corresponding literary genre. In its written form, it typically features two or more characters who engage in a discussion concerning morals, knowledge, as well as a variety of topics that can be widely labelled as ‘philosophical’. Our philosophical dialogue takes place in Krakow, Poland. It is a rainy morning and two strangers are waiting at a tram stop. One of them is dressed neatly, and cannot stop fidgeting with his (...) closed umbrella. The other was caught unprepared by the morning downpour and water is dripping from his worn, soaked jacket. (shrink)

A key ethical issue arising in data linkage research relates to consent requirements. Patients’ consent preferences in the context of health research have been explored but their consent preferences regarding data linkage specifically have been under-explored. In addition, the views on data linkage are often those of patient groups. As a result, little is known about lay people’s views and their preferences about consent requirements in the context of data linkage. This study explores lay people’s views and justifications regarding the (...) acceptability of conducting data linkage research without obtaining consent. (shrink)

There is a growing expectation, or even requirement, for researchers to deposit a variety of research data in data repositories as a condition of funding or publication. This expectation recognizes the enormous benefits of data collected and created for research purposes being made available for secondary uses, as open science gains increasing support. This is particularly so in the context of big data, especially where health data is involved. There are, however, also challenges relating to the collection, storage, and re-use (...) of research data. This paper gives a brief overview of the landscape of data sharing via data repositories and discusses some of the key ethical issues raised by the sharing of health-related research data, including expectations of privacy and confidentiality, the transparency of repository governance structures, access restrictions, as well as data ownership and the fair attribution of credit. To consider these issues and the values that are pertinent, the paper applies the deliberative balancing approach articulated in the Ethics Framework for Big Data in Health and Research to the domain of Openness in Big Data and Data Repositories. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. (shrink)

Over the last two decades our understanding of the relationship of gender, politics and the state has been transformed almost beyond recognition by the mutual interrogation of feminism and political science. This volume provides an overview of this dynamic and growing field, which reflects both its expanding empirical scope and the accompanying theoretical development and debate. The first three essays focus primarily on conceptual and theoretical issues: the meaning of 'gender'; the state's role in the construction of gender within the (...) public and private sphere; and the political representation of gender differences within liberal democracy. The remaining six provide analyses of more concrete issues of state policy and participation in differeing national political contexts: abortion politics in Ireland; the local politics of prostitution in Britain, the impact on women's political participation of economic change in China, Latin America and political change in Russia, and the gender impact of state programmes of land reform. (shrink)

The COVID-19 pandemic has had a significant impact globally. Most affected, however, are those individuals and groups routinely disadvantaged by the social injustice created by the misdistribution of power, money, and resources. Simple measures that prevent the spread of COVID-19, such as frequent hand washing and social distancing, are unavailable to millions of people in the wealthiest of nations and in the poorest of nations. Disadvantaged groups are impacted more directly and in disproportionately higher numbers due to existing poor health, (...) and the disruption of services central to securing an income and an education will have lasting consequences for their futures. The unintended effect of exclusionary government policies is that privileged citizens and healthcare systems are also at greater risk. This paper seeks to highlight the impact of COVID-19 on those already suffering health inequities through consideration of some of the social determinants of health on groups in affluent and poorer nations. It also highlights some of the factors that may assist in tackling health inequities as we emerge from this pandemic. (shrink)

This paper recommends that experimental analysts of language development abandon for the purposes of experimental inquiry both the term "language" and the concept it designates. In support of this recommendation, the paper dis cusses the multiple meanings of "language," the proposal that "language" refers to behavior, the implicit acceptance by behavior analysts of psycholinguistic thought despite their ostensible rejection of it, and the nature of language as a subject matter. In addition, the nature of common-sense psychology, the domain of behavior (...) analysis, the formal nature of Chomskyan linguistics, and the rela tion between psychology and behavior analysis are discussed. (shrink)

Anthropology diffracted : originary humanicity -- Just figures?: forensic clairvoyance, mathematics, and the language question -- Enumerating language : "The unreasonable effectiveness of mathematics" -- Natural convers(at)ions : or, what if culture was really nature all along? -- (Con)founding "the human" : rethinking the incest taboo -- Culpability and the double-cross : Irigaray with Merleau-Ponty.

Unmet legal needs contribute to housing, income, and food insecurity, along with other conditions that harm health and drive health inequity. Addressing health injustice requires new tools for the next generations of lawyers, doctors, and other healthcare professionals. An interprofessional group of co-authors argue that law and medical schools and other university partners should develop and cultivate Academic Medical-Legal Partnerships (A-MLPs), which are uniquely positioned to leverage service, education, and research resources, to advance health justice.

This article aims to present a Žižekian reading of the British author David Herbert Lawrence. The contemporary continental philosopher has tackled each of the British author’s reoccurring themes individually and thus may be used as a keystone for a valid literary interpretatio n. The paper begins by shedding light on the representation of Western ideology, moves further into the comprehension of the impacts of modern cultural capital and the limitations of industrialization. While at the same time the dissertation targets another (...) component of the romantic poet’s many writings which are characterized by the regeneration of the subject’s carnal presence as a defense mechanism against the prevalent culture of de-humanization. The argument at hand is that the reconstruction of the bodily image rendered through Lawrence’s erotic literature is not one that portrays promiscuity, but rather demonstrates a transgression of the Lacanian symbolic and the attainment of a partial rendition of a Hegelian totality. Lawrence’s six novels and set of poems are thoroughly analyzed from a strictly Žižekian p erspective to demonstrate that th e two authors share thematic representations, a common worldview and propose a manifestation of how literary analyses may be conveyed using Žižek as a philosophical lens for literary interpretation. (shrink)

The objective of this article is to show that Hannah Arendt’s understanding of totalitarianism is indebted to the analysis of National Socialism elaborated by Franz Neumann in Behemoth: The Structure and Practice of National Socialism. It is argued that Arendt adopted the central thesis of Neumann according to which Nazi Germany is a ‘non-state’ and that this thesis as well as its presuppositions are discernible in her overall approach, developed in The Origins of Totalitarianism.

In exploring phenomenological literature, it is evident that the term ‘phenomenology’ holds rather different meanings depending upon the context. Phenomenology has been described as both a philosophical movement and an approach to human science research. The phenomenology of Husserl, Heidegger, Gadamer, and Merleau-Ponty was philosophical in nature and not intended to provide rules or procedures for conducting research. The Canadian social scientist, van Manen, however, introduced specific guidelines for conducting human science research, which is rooted in hermeneutic phenomenology and this (...) particular method has been employed in professional disciplines such as education, nursing, clinical psychology, and law. The purpose of this paper is to explore the difference between the phenomenological method as described by van Manen and that of other philosophers such as Husserl, Heidegger, Gadamer, and Merleau-Ponty. In so doing, the author aims to address the blurred boundaries of phenomenology as a research method and as a philosophical movement and highlight the influence of these blurred boundaries on nursing knowledge development. (shrink)

CSR is now an important issue for all companies, large and small. Companies are under pressure to behave responsibly from their consumers, in their purchasing activities, from the government and regulators, from the investment community and from potential employees.

CSR is now an important issue for all companies, large and small. Companies are under pressure to behave responsibly from their consumers, in their purchasing activities, from the government and regulators, from the investment community and from potential employees.

This review of Madhav Kkhosla’s book, India’s Founding Moment, sees his approach as one of “best lights” understandings, that is, an effort to identify and explain the conceptual underpinnings of India’s founding constitution in their best lights. Khosla emphasizes as key the ways in which the constitution’s requirements of full adult suffrage, its intense specificity of language, and its strongly centralized government form, all contribute conceptually to the creation of the democratic citizen of India—a citizen whose rights across the country (...) were secured by a common constitution and central government, whose knowledge of and ability to exercise rights were enhanced by the constitution’s codified approach, and a citizen whose capacities to participate in democratic processes would be developed by the exercise of democratic rights. The review focuses attention on choices about suffrage, comparing India’s with the less inclusionary founding impulses of the United States constitution. It explores nuances of how codification would and would not promote exercises of citizenship rights, noting the importance of adjudication in the construction of the “common knowledge” to which the founders aspired. And the review argues that today, as more illiberal, authoritarian regimes are on the rise, the book’s emphasis on the importance of ideas, words, and common knowledge in constructing liberal, democratic politics is of urgent contemporary importance. (shrink)

This paper examines the connection between politics and public space at a time when photography and the new media have put the classical distinction between the public and the private into question. My focus is on the body which, according to Hannah Arendt and the classical philosophers, is the most private thing there is. Drawing on the work of Weimar photojournalist Erich Salomon – who was among the first to infiltrate the spaces where political talks were held and decisions taken (...) – I argue for an understanding of the body as an aesthetic object and a site where public and private criss-cross and intersect. The body in photography leads me to the final part of the paper where I trace the figuring of the body in the texts of Plato, Aristotle and the Stoics, and argue that far from being a recent phenomenon, the aestheticisation of politics is already at work in the tradition that celebrates deliberation and the public use of reason. (shrink)

'...as an introductory text, the book is admirable: it sets out the questions clearly and specifies the terms of the debate at every juncture.' - Ann Oakley, British Book News.

BackgroundCarefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/aids, without increasing burdens. Such studies, however, must navigate a ‘vulnerability paradox’, since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science research, linked to a cohort study involving Adolescents Living with HIV/aids (ALH) in Kenya, we develop an account of researchers’ responsibilities towards young people, incorporating concepts of vulnerability, resilience, and agency (...) as ‘interacting layers’.MethodsUsing a qualitative, iterative approach across three linked data collection phases including interviews, group discussions, observations and a participatory workshop, we explored stakeholders’ perspectives on vulnerability and resilience of young people living with HIV/aids, in relation to home and community, school, health care and health research participation. A total of 62 policy, provider, research, and community-based stakeholders were involved, including 27 ALH participating in a longitudinal cohort study. Data analysis drew on a Framework Analysis approach; ethical analysis adapts Luna’s layered account of vulnerability.ResultsALH experienced forms of vulnerability and resilience in their daily lives in which socioeconomic context, institutional policies, organisational systems and interpersonal relations were key, interrelated influences. Anticipated and experienced forms of stigma and discrimination in schools, health clinics and communities were linked to actions undermining ART adherence, worsening physical and mental health, and poor educational outcomes, indicating cascading forms of vulnerability, resulting in worsened vulnerabilities. Positive inputs within and across sectors could build resilience, improve outcomes, and support positive research experiences.ConclusionsThe most serious forms of vulnerability faced by ALH in the cohort study were related to structural, inter-sectoral influences, unrelated to study participation and underscored by constraints to their agency. Vulnerabilities, including cascading forms, were potentially responsive to policy-based and interpersonal actions. Stakeholder engagement supported cohort design and implementation, building privacy, stakeholder understanding, interpersonal relations and ancillary care policies. Structural forms of vulnerability underscore researchers’ responsibilities to work within multi-sectoral partnerships to plan and implement studies involving ALH, share findings in a timely way and contribute to policies addressing known causes of vulnerabilities. (shrink)

International research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment. Strong calls have been made for the active involvement of children and adolescents in developing research proposals and policies, including in decision-making about research participation. Much evidence and debate on this topic has focused on high-income settings, while the greatest health burdens and research gaps occur in low-middle income countries, highlighting the need to take (...) account of voices from more diverse contexts. Between January and March 2014, 56 community representatives and secondary school students were involved in eight group discussions to explore views on the acceptability of involving children and adolescents in research, and how these groups should be involved in decision-making about their own participation. Discussions were voice-recorded and transcriptions analyzed using Framework Analysis, combining deductive and inductive approaches. Across these discussions, the idea of involving children and adolescents in decision-making about research participation was strongly supported given similar levels of responsibility carried in everyday life; existing capacity that should be recognized; the opportunity for learning involved; varying levels of parental control; and generational shifts towards greater understanding of science for adolescents than their parents. Joint decision-making processes were supported for older children and adolescents, with parental control influenced by perceptions of the risks involved in participation. Moves towards more active involvement of children and adolescents in planning studies and in making decisions about their participation are supported by these findings from Kenya. Important emerging considerations include the need to take account of the nature of proposed studies and prevailing attitudes and understanding of research in identifying children’s and adolescents’ roles. More research is needed to expand diversity and develop approaches to joint assent and consent processes that would fairly represent children’s and adolescents’ wishes and interests, towards their long term benefit. (shrink)

With contributions from leading scholars in constitutional law, this volume examines how carefully designed and limited doctrines of proportionality can improve judicial decision-making, how it is applied in different jurisdictions, its role on constitutionalism outside the courts, and whether the principle of proportionality actually advances or detracts from democracy. Contributions from some of the seminal thinkers on the development of scholarship on proportionality extend their prior work and engage in an important dialogue on the topic. Some offer substantial critiques, others (...) defend the doctrine and offer important clarifications and extensions of their prior work. Throughout, the authors engage not only with case law from around the world but also with existing scholarly treatments of the subject. Mathematical treatments are avoided, making the book accessible to readers from both 'soft' and hard' social science backgrounds. (shrink)