This article investigates a high-profile and ongoing dilemma for healthcare professionals, namely whether the existence of a duty of care to genetic relatives of a patient is a help or a hindrance in deciding what to do in cases where a patient’s genetic information may have relevance to the health of the patient’s family members. The English case ABC v St George’s Healthcare NHS Trust and others considered if a duty of confidentiality owed to the patient and a putative duty (...) of care to the patient’s close relatives could coexist in this context. This article examines whether embracing the concept of coexisting duties could enable HCPs to respect duties in line with their clinical judgement, thereby providing legal support and clarity to professionals to allow them to provide the best possible genetics service to both the patient and their family. We argue that these dual duties, framed as a novel, composite duty to consider the interests of genetic relatives, could allow HCPs to exercise and act on their professional judgements about the relative value of information to family members, without fears of liability for negligence or breach of confidence. (shrink)
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. No data are available. (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)
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)
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)
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.
International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice locally, (...) and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status. (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)
Los cuatro pertenecían a una generación que mantuvo contacto directo con Wittgenstein, Carnap o Russell. La potencia conceptual de la filosofía analítica sobrevuela, por fortuna, a sus protagonistas y no se extingue con ellos.
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)
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)
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)
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)
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)
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)
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)
El presente trabajo nació como una reflexión posterior a la traducción del libro de Stanley Cavell Contesting Tears: The Hollywood Melodrama of the Unknown Woman. La reflexión era necesaria habida cuenta de las dudas suscitadas por la traducción del título del libro. Para ser más exacto, la reflexión giraba en torno a las lágrimas que forman parte de la primera parte del título, las lágrimas vertidas por las mujeres desconocidas que protagonizan los melodramas analizados en el libro. En mi opinión, (...) llegar a entender la razón y la naturaleza de esas lágrimas es clave para comprender lo que Cavell nos viene contando desde hace cinco décadas. Por ello, lo que sigue intenta reunir mis propios comentarios sobre la obra de Cavell en general, con la justificación de la traducción final del título: Más allá de las lágrimas. (shrink)
In this contribution to the Common Knowledge symposium “Fuzzy Studies,” the authors, all of whom work in the field of science, technology, and society, begin from the assumption that, as Bruno Latour has put it, “we have never been modern.” They accept the STS thesis that, while modern practices purport to be entirely rational and coherent, on closer inspection they turn out to be as much noncoherent as coherent. This article poses the question of what forms “noncoherences” take and how (...) they are managed. The basic argument is that there is a range of styles of noncoherence or “modes of syncretism.” In small case studies, the authors identify six such modes or styles, which they term denial, domestication, separation, care, conflict, and collapse. Given that consistency and coherence seem less important now than they were once taken to be — and given that the conditions of possibility for purity are, in any case, in decline — this list and its supporting case studies, while not meant to be definitive, are offered as a way of understanding how practices that do not cohere may still function and fit together admirably. (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.
This study of philanthropy among large Black-owned businesses provides insights into a sector of business giving which has not been studied. Results indicate that philanthropy and ethical justifications play a more important role in minority business enterprises than in non-minority firms studied previously.
The Tuskegee Syphilis Study is often cited as a major reason for low research participation rates among racial/ethnic minorities. We use data from a random-digit-dial telephone survey of 510 African Americans and 253 Latinos drawn from low income Los Angeles neighborhoods to investigate associations between knowledge of the study and endorsement of HIV/aids conspiracy theories. Results indicate African Americans were significantly more likely than Latinos to endorse HIV/aids conspiracy theories and were more aware of the study. Nevertheless, few Americans and (...) Latinos had ever heard of Syphilis Study suggesting that awareness is not a major factor in low participation rates. (shrink)
In 1997 President Clinton apologized to the survivors of the U.S. Public Health Service Syphilis Study. Since then, two of his recommendations have received little attention. First, he emphasized the need to remember the shameful past so we can build a better future for racial'ethnic minority populations. Second, he directed the creation in partnership with higher education to prepare training materials that would instruct biomedical researchers on the application of ethical principles to research with racial/ethnic minority populations. This article proposes (...) the inclusion of these issues in the implementation of the Affordable Care Act. It asks, What is the right or good thing to do? What are our obligations to one another? Two challenges are examined: (a) Conducting research with African Americans without knowledge of bioethics specific to this population, and (b) the ethical dilemma of conducting research that does not adequately take into account the diversity within the Black population that is a contributing factor in health disparities. Training and policy recommendations responsive to President Clinton's Apology are presented. (shrink)
Barcelona has become one of the most touristic cities in the world, with more than 18 million visitors per year, coming to a city with only 1.7 million inhabitants. The model of tourism is depredatory, destroying old neighborhoods and pushing Catalans out of the city. At the same time, people from the Global South come to the city, but in more precarious conditions. They find a city that does not welcome them and that puts them in the worst conditions. I (...) want to focus on two movies that present Barcelona as an ill city. On the one hand, we have Woody Allen’s Vicky, Cristina, Barcelona, a movie that shows the upper-class American tourism in a European city. On the other hand, Alejandro González Iñárritu’s Biutiful, also starred by Javier Bardem, shows us another story about Barcelona. This is a movie that pays attention to the bottom of the well, Spanish lower-class workers struggling shoulder to shoulder with lower class migrants, people who will never enjoy the life that Allen`s characters have. In this paper I want to show how film can represent illness in different ways. To do so, I first explain, very briefly, the Barcelona model, a model of inclusive, modern city that Vicky and Cristina enjoy. But, this model insofar as it includes people, it excludes them. I will show the construction of the City from 1888 to 1992/2004 and how it has created spaces of inclusion and exclusion. In the second part, I will analyze the right to housing and the housing crisis that is currently affecting the city. In this part, I want to focus both in the crisis and in the social mobilization that it has brought about. After constructing this context, I will analyze the two movies, as instruments to show/hide the diseases of the city. (shrink)
Machiavelli's ambiguous treatment of religion has fueled a contentios and long-standing debate among scholars. Whereas some insist that Machiavelli is a Christian, others maintain he is a pagan. Sullivan mediates between these divergent views by arguing that he is neither but that he utilizes elements of both understandings arrayed in a wholly new way. She develops her argument by distinguishing among the three Romes that can be understood as existing in Machiavelli's political thought: the first is the Rome of the (...) Christian era, dominated by the pope; the second is the republican Rome of pagan times, which Machiavelli praises; and the third is an idealized Rome that is neither entirely pagan nor entirely Christian. Sullivan draws primarily from the Florentine Histories, The Prince, and the Discourses to offer a unique study of Machiavelli's political thought. Her examination of Machiavelli's three Romes will engage readers concerned with political thought, philosophy of the state, and Machiavelli. (shrink)
Parents who are facing decisions about life-sustaining treatment for their seriously ill or dying child are supported by their child's doctors and nurses. They also frequently seek other information sources to help them deal with the medical and ethical questions that arise. This might include written or web-based information. As part of a project involving the development of such a resource to support parents facing difficult decisions, some ethical questions emerged. Should this information be presented in a strictly neutral fashion? (...) Is it problematic if narratives, arguments or perspectives appear to favour stopping over continuing life-sustaining treatment? Similar questions might arise with written materials about decisions for adults, or for other ethically contentious decisions. This paper explores the meaning of ‘balance’ in information provision, focusing particularly on written information about life-sustaining treatment for children. We contrast the norm of non-directiveness in genetic counselling with the shared decision-making model often endorsed in end-of-life care. We review evidence that parents do not find neutrality from medical professionals helpful in discussions. We argue that balance in written information must be understood in the light of the aim of the document, the most common situation in which it will be used, and any existing biases. We conclude with four important strategies for ensuring that non-neutral information is nevertheless ethically appropriate. (shrink)
There is wide agreement that community engagement is important for many research types and settings, often including interaction with ‘representatives’ of communities. There is relatively little published experience of community engagement in international research settings, with available information focusing on Community Advisory Boards or Groups (CAB/CAGs), or variants of these, where CAB/G members often advise researchers on behalf of the communities they represent. In this paper we describe a network of community members (‘KEMRI Community Representatives’, or ‘KCRs’) linked to a (...) large multi-disciplinary research programme on the Kenyan Coast. Unlike many CAB/Gs, the intention with the KCR network has evolved to be for members to represent the geographical areas in which a diverse range of health studies are conducted through being typical of those communities. We draw on routine reports, self-administered questionnaires and interviews to: 1) document how typical KCR members are of the local communities in terms of basic characteristics, and 2) explore KCR's perceptions of their roles, and of the benefits and challenges of undertaking these roles. We conclude that this evolving network is a potentially valuable way of strengthening interactions between a research institution and a local geographic community, through contributing to meeting intrinsic ethical values such as showing respect, and instrumental values such as improving consent processes. However, there are numerous challenges involved. Other ways of interacting with members of local communities, including community leaders, and the most vulnerable groups least likely to be vocal in representative groups, have always been, and remain, essential. (shrink)
Anorexia nervosa remains an enigma among Western cultures. Various causal explanations have been offered, encompassing biological, psychological, and sociocultural models. These explanations, however, focus on the immediate or proximal mechanisms of causation. A more thorough understanding of anorexia nervosa can be achieved by understanding the relationship between these factors and ultimate causation, the level of explanation which deals with individual reproductive fitness. This paper reviews the biological, psychological, sociocultural, and evolutionary models and indicates a necessary synthesis between proximate and ultimate (...) levels of causation in examining the anorexia nervosa puzzle. (shrink)
The article discusses three versions of context. First, UK Government legislation, the British Cattle Tracing System, as a context that frames and guides good farming practices to promote accountability for cattle movements and to control disease. It describes how the legislative context creates particular constructions of farmers, cows, and good and bad farming practices. Second, the article creates context as the local farm-based practices of cattle movement and monitoring. Differences and similarities between the legislative requirements and the farm-based practices are (...) discussed. The farming practices are primarily practices of responsibility and care that are embodied, relational, collective, and responsive. The article draws upon feminist insights into responsibility and accountability that accountability is mundane practices of touch, regard, looking back, and becoming with. Thereby, the article creates a third context in which local farming practices, legislation, and feminism meet and interact with one another. Within this “meta-context” of interferences between contexts, accountability is revisioned as the very condition of farm-based practices of care and responsibility. At the same time, the article revisions context as emergent in interferences and enacts alternative versions of farmers, cows, and good and bad practices. (shrink)