Global health emergencies such as the COVID-19 pandemic are contexts in which it is critical to draw upon learning from prior research and to conduct novel research to inform real-time decision-making and pandemic responses. While research is vitally important, however, emergencies are radically non-ideal contexts for its conduct, due to exceptional uncertainty, urgency, disruption, health needs, and strain on existing health systems, amongst other challenges. This generates novel ethical challenges and a broader conception of research ethics is necessary to effectively (...) address the complexity of pandemic research contexts. Going beyond traditional approaches to research ethics centring on the design of specific studies, this broader conception requires consideration of fundamental questions relating to the exercise of power and influence throughout research pathways, and a broader attention to both salient ethical issues, and the ethical responsibilities of stakeholders. These include important questions about responsibilities to gather evidence and generate knowledge systematically during emergencies, to implement policy responses in ways that are amenable to evaluation, and even potential moral obligations to participate in research. In situations of heightened uncertainty, additional questions arise about what constitutes sufficient evidence to justify the development and implementation of policy responses, and the responsibilities of scientific and social science researchers involved in policy-making processes. The four cases in this chapter prompt reflection on evolving and at times competing values and responsibilities of policy-makers, regulators, health authorities and researchers during the design and conduct of research, and proposed early implementation of research findings. These cases highlight issues arising when conducting research of national importance in a pandemic, where researchers are required to liaise with authorities responsible for pandemic responses and address complex ethical issues, including protecting the interests of participants and publics when tensions arise between prioritising the completion of research and accelerating the rollout of novel health interventions. This chapter invites reflection on the practical ethical implications of commitments to undertake research during emergencies, including the nature and scope of the relevant responsibilities of a range of stakeholders. (shrink)

Within the research community, it is generally accepted that consent processes for research should be culturally appropriate and tailored to the context, yet researchers continue to grapple with what valid consent means within specific stakeholder groups. In this study, we explored the consent practices and attitudes regarding essential information required for the consent process within hospital-based trial communities from four referral hospitals in Vietnam. We collected surveys from and conducted semi-structured interviews with study physicians, study nurses, ethics committee members, and (...) study participants and family members regarding their experiences of participating in research, their perspectives toward research, and their views about various elements of the consent process. In our findings, we describe three interrelated themes related to the consent process: words and regulation; reimbursement, suspicions, and joining; and responsibilities. In general, stakeholders had highly varied perspectives of nghiên cứu and researchers used varying levels of detail regarding all aspects of the study in the consent process to build trust with and/or promote potential research participants’ choices about taking part in research. Findings additionally highlight how researchers felt that offering financial reimbursements in a hospital setting, where payment for services was routine, would be unfamiliar to participants and could raise suspicions about the research. Participants, however, focused their discussions on reimbursement or alternative reasons for joining the study, such as health related benefits or altruism. Finally, participants often relied on their physician to help them decide about joining a study or not. Further research is needed to understand how researchers and participants make sense of and practice consent, and how that impacts participants’ decision-making about research participation. To promote valid consent within this context, it is important to engage with hospital-based trial communities as a whole. The data from this study will inform future research on consent, guide the revisions of consent related policies within our research sites and point to several larger issues surrounding researcher-participant expectations, communication, and trust. (shrink)

Biometrics is the science of establishing the identity of an individual based on their physical attributes. Ethical concerns surrounding the appropriate use of biometrics have been raised, especial...

Research funders, regulatory agencies, and journals are increasingly expecting that individual-level data from health research will be shared. Broad consent to such sharing is considered appropriate, feasible and acceptable in low- and middle-income settings, but to date limited empirical research has been conducted to inform the design of such processes. We examined stakeholder perspectives about how best to seek broad consent to sharing data from the Mahidol Oxford Tropical Medicine Research Unit, which implemented a data sharing policy and broad consent (...) to data sharing in January 2016. Between February and August 2017 qualitative data were collected at two sites, Bangkok and the Thai-Myanmar border town of Mae Sot. We conducted eighteen semi-structured interviews. We also conducted four focus group discussions with a total of nineteen people. Descriptive and thematic coding informed analysis of aspects of data sharing that are considered most important to inform participants about, and the best ways to explain complex and abstract topics relating to data sharing. The findings demonstrated that clinical trial participants prioritise information about the potential benefits and harms of data sharing. Stakeholders made multiple suggestions for clarifying information provided about data sharing on such topics. There was significant variation amongst stakeholders’ perspectives about how much information should be provided about data sharing, and it was clear that effective information provision should be responsive to the study, the study population, the individual research participant and the research context. Effectively communicating about data sharing with research participants is challenging in practice, highlighting the importance of robust and effective data sharing governance in this context. Broad consent should incorporate effective and efficient explanations of data sharing to promote informed decision-making, without impeding research participants’ understandings of key aspects of the research from which data will be shared. Further work is required to refine both the development of core information about data sharing to be provided to all research participants, and appropriate solutions for context specific-challenges arising when explaining data sharing. (shrink)

Since January 2016, the Mahidol Oxford Tropical Medicine Research Unit has trialled a data-sharing policy where requests to access research datasets are processed through a Data Access Committee. In this paper, we share our experiences establishing data management systems and data-sharing infrastructure including a data-sharing policy, data access committee and related procedures. We identified a number of practical and ethical challenges including requests for datasets collected without specific or broad consent to data sharing and requests from pharmaceutical companies for data (...) to support drug registration applications. We also encountered significant resource constraints which required the development of appropriate human resources and infrastructure. We suggest a research agenda to promote responsible and equitable data sharing while safeguarding the rights and interests of research participants and researchers. (shrink)

COVID-19 poses an exceptional threat to global public health and well-being. Recognition of the need to develop effective vaccines at unprecedented speed has led to calls to accelerate research pathways ethically, including by conducting challenge studies ) with SARS-CoV-2. Such research is controversial, with concerns being raised about the social, legal, ethical and clinical implications of infecting healthy volunteers with SARS-CoV-2 for research purposes. Systematic risk evaluations are critical to inform assessments of the ethics of any proposed SARS-CoV-2 CHIs. Such (...) evaluations will necessarily take place within a rapidly changing and at times contested epidemiological landscape, in which differing criteria for the ethical acceptability of research risks have been proposed. This paper critically reviews two such criteria and evaluates whether the use of effective treatment should be a necessary condition for the ethical acceptability of SARS-CoV-2 CHIs, and whether the choice of study sites should be influenced by COVID-19 incidence levels. The paper concludes that ethical evaluations of proposed SARS-CoV-2 CHIs should be informed by rigorous, consultative and holistic approaches to systematic risk assessment. (shrink)

This article analyses the connections between forms of solitary automobile habitation and the use of mobile sound technologies in automobiles: the radio, cassette, sound system and mobile phone. It does this through an empirically informed analysis of automobile use. In doing so it re-evaluates our understanding of the occupation of space and place, arguing that traditional concepts of urban space have underestimated the active role that the users of these communication technologies might have in transforming the meaning of these spaces (...) as they pass through them. The article points to the powerful, and potentially problematic, role that sound technologies play in the daily experience of moving through the city. (shrink)

BackgroundGenome-wide association studies (GWAS) provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.DiscussionWe explore ethical (...) issues in three key areas: protecting the interests of research participants, regulation of international collaborative genomics research and protecting the interests of scientists in low income countries. With regard to participants, important challenges are raised about community consultation and consent. Genomics research raises ethical and governance issues about sample export and ownership, about the use of archived samples and about the complexity of reviewing such large international projects. In the context of protecting the interests of researchers in low income countries, we discuss aspects of data sharing and capacity building that need to be considered for sustainable and mutually beneficial collaborations.SummaryMany ethical issues are raised when genomics research is conducted on populations that are characterised by lower average income and literacy levels, such as the populations included in MalariaGEN. It is important that such issues are appropriately addressed in such research. Our experience suggests that the ethical issues in genomics research can best be identified, analysed and addressed where ethics is embedded in the design and implementation of such research projects. (shrink)

This open access casebook addresses complex and important ethical challenges arising when health-related research in conducted in the context of epidemics and pandemics. This book provides contextually-rich real-world case studies illustrating research ethics issues encountered by researchers, ethics reviewers and regulators around the globe during the COVID-19 pandemic. The accompanying commentaries outline relevant conceptual approaches and ethical considerations. These promote understanding and reflection on relevant ethical issues, ethical approaches and competing considerations in a manner supporting thoughtful evaluation of their implications (...) for practice. As such the casebook is relevant to academic and professional audiences with an interest in global health, research ethics, and outbreaks and epidemics. (shrink)

This casebook offers a window into important aspects of the ethical landscapes that researchers, communities, health professionals, policy makers – and ethicists – had to navigate during the first 15 months of the COVID-19 pandemic. The cases presented in this casebook are inevitably a selection informed by and constrained by the processes through which they were sought, and by the pandemic itself. Additional cases could valuably complement all the thematic chapters in this casebook. In addition, this casebook calls for a (...) broader approach to research ethics, both in terms of the issues to be considered, and the range of stakeholders having ethical responsibilities relating to the conduct of research. However a broad range of stakeholders have differing values, remits, authorities and capacities to exercise power in pandemic contexts, and in many situations, exercises of power, and their impact on research, are not direct and explicit. As such they are less amenable to clear representation in real-world cases, highlighting the importance of complementing discussions of the cases in this casebook with conceptual literature. Reflection on the research that has not been conducted is also critical. The COVID-19 pandemic has reemphasized that global health emergencies are never only about health. The wide-ranging impacts of the pandemic on economies, employment, education and a range of socially and culturally important activities, accentuates the importance of an equally comprehensive research agenda, which goes beyond a narrow conception of ‘health’, and addresses a broad range of pandemic impacts on populations. A further way in which we believe debate on pandemic research ethics both could and should be broadened is in relation to aspects of pandemic science beyond those relating to ‘response’. Inevitably, in the context of an emerging and continuing pandemic, scientific research attention has tended to focus on interventions that can enable more effective responses. However pandemic science can be thought of as divisible into four interdependent and overlapping domains: prevention, preparedness, response, and recovery. Research is essential to the development, evaluation, and deployment of interventions in each of these domains and effective, valuable, trustworthy and trusted research will require ethical questions to be identified and addressed. This chapter concludes by inviting the connection of additional cases and conceptual resources to this casebook, to enhance and expand the themes and topics covered. (shrink)

In recent years, there has been an increase in the establishment of biobanks for genetic and genomic studies around the globe. One example of this is the Human Heredity and Health in Africa Initiative (H3Africa), which has established biobanks in the sub‐region to facilitate future indigenous genomic studies. The concept of ‘broad consent’ has been proposed as a mechanism to enable potential research participants in biobanks to give permission for their samples to be used in future research studies. However, questions (...) remain about the acceptability of this model of consent. Drawing on findings from empirical research about the role of trust in decision‐making, we argue that an account of entrustment may be an appropriate way of addressing current challenges of seeking consent for biobank research in Africa. We propose a set of key points to consider that can support the proposed entrustment framework. (shrink)

BackgroundObtaining informed consent for participation in genomic research in low-income settings presents specific ethical issues requiring attention. These include the challenges that arise when providing information about unfamiliar and technical research methods, the implications of complicated infrastructure and data sharing requirements, and the potential consequences of future research with samples and data. This study investigated researchers’ and participants’ parents’ experiences of a consent process and understandings of a genome-wide association study of malaria involving children aged five and under in Mali. (...) It aimed to inform best practices in recruiting participants into genomic research.MethodsA qualitative rapid ethical assessment was undertaken. Fifty-five semi-structured interviews were conducted with the parents of research participants. An additional nine semi-structured interviews were conducted with senior research scientists, research assistants and with a member of an ethics committee. A focus group with five parents of research participants and direct observations of four consent processes were also conducted. French and translated English transcripts were descriptively and thematically coded using OpenCode software.ResultsParticipants’ parents in the MalariaGEN study had differing understandings of the causes of malaria, the rationale for collecting blood samples, the purposes of the study and the kinds of information the study would generate. Genomic aspects of the research, including the gene/environment interaction underlying susceptibility or resistance to severe malaria, proved particularly challenging to explain and understand.ConclusionsThis study identifies a number of areas to be addressed in the design of consent processes for genomic research, some of which require careful ethical analysis. These include determining how much information should be provided about differing aspects of the research and how best to promote understandings of genomic research. We conclude that it is important to build capacity in the design and conduct of effective and appropriate consent processes for genomic research in low and middle-income settings. Additionally, consideration should be given to the role of review committees and community consultation activities in protecting the interests of participants in genomic research. (shrink)

Integrated information systems are increasingly used in schools, and the advent of the technology-rich classroom requires a new degree of ongoing classroom assessment. Able to track web searches, resources used, task completion time, and a variety of other classroom behaviors, technology-rich classrooms offer a wealth of potential information about teaching and learning. This information can be used to track student progress in languages, STEM, and in 21st Century skills, for instance. However, despite these changes, there has been little change in (...) the kind of data made available to teachers, administrators, students, and parents. Measuring and Visualizing Learning in the Information-Rich Classroom collects research on the implementation of classroom assessment techniques in technology-enhanced learning environments. Building on research conducted by a multinational and multidisciplinary team of learning technology experts, and specialists from around the globe, this book addresses these discrepancies. With contributions from major researchers in education technology, testing and assessment, and education psychology, this book contributes to a holistic approach for building the information infrastructure of the 21st Century school. (shrink)

Background: Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods: The study used a rapid assessment incorporating multiple qualitative methods (...) including in depth interviews, focus group discussions and observations of consent processes. Differences between verbal information provided during community engagement processes, and consent processes during the enrolment of cases and controls were identified, as well as the factors influencing the tailoring of such information. Results: MalariaGEN participants and field staff seeking consent were generally satisfied with their understanding of the project and were familiar with aspects of the study relating to malaria. Some genetic aspects of the study were also well understood. Participants and staff seeking consent were less aware of the methodologies employed during genomic research and their implications, such as the breadth of data generated and the potential for future secondary research.Moreover, trust in and previous experience with the Navrongo Health Research Centre which was conducting the research influenced beliefs about the benefits of participating in the MalariaGEN study and subsequent decision-making about research participation. Conclusions: It is important to recognise that some aspects of complex genomic research may be of less interest to and less well understood by research participants and that such gaps in understanding may not be entirely addressed by best practice in the design and conduct of consent processes. In such circumstances consideration needs to be given to additional protections for participants that may need to be implemented in such research, and how best to provide such protections.Capacity building for research ethics committees with limited familiarity with genetic and genomic research, and appropriate engagement with communities to elicit opinions of the ethical issues arising and acceptability of downstream uses of genome wide association data are likely to be important. (shrink)

For many decades, access to human biological samples, such as cells, tissues, organs, blood, and sub-cellular materials such as DNA, for use in biomedical research, has been central in understanding the nature and transmission of diseases across the globe. However, the limitations of current ethical and regulatory frameworks in sub-Saharan Africa to govern the collection, export, storage and reuse of these samples have resulted in inconsistencies in practice and a number of ethical concerns for sample donors, researchers and research ethics (...) committees. This paper examines stakeholders’ perspectives of and responses to the ethical issues arising from these research practices. (shrink)

Paediatric research in low-income countries is essential to tackle high childhood mortality. As with all research, consent is an essential part of ethical practice for paediatric studies. Ethics guidelines recommend that parents or another proxy provide legal consent for children to participate, but that children should be involved in the decision through providing assent. However, there remain uncertainties about how to judge when children are ready to give assent and about appropriate assent processes. Malawi does not yet have detailed guidelines (...) on assent. Understanding perspectives among children and their parents can assist in developing contextually-appropriate assent guidance. Qualitative research was conducted with children and parents in three settings in Southern Malawi, to take account of any variations between socioeconomic and cultural contexts. In each setting, interviews were conducted with parents and their children who had participated in paediatric research to understand their experiences of assent and views on appropriate assent practice. Focus groups were also conducted with children and parents, to understand broader social perspectives. We found widespread support for involving children in decisions on research participation. Participants identified a range of factors that affect children’s capacity to give assent, including intellectual capacity, emotional development, life experience and cultural norms. Age was often mentioned as a consideration, but deemed an unreliable sole indicator of capacity to assent. In relation to appropriate assent processes, participants emphasised considerations such as supporting effective understanding and minimizing harms. Views on how to achieve these aims varied; for example, there were different ideas about the appropriate order in which to approach children and parents, and about whose decision to respect in the event of disagreement. Parents and children agreed about the value of involving children in decisions on research, and about the need to promote children’s decision-making capacity while respecting parents’ interests in children’s welfare. Developing practical guidance that meets these principles is challenging, particularly given the need for flexible approaches that suit different study types, children’s capacities and family environments. Further discussion within the Malawi research and ethics community will help develop contextually-appropriate guidelines. (shrink)

Preface to the second edition -- Preface to the first edition -- Psycho-mythology : meschugge? -- Dreams and fantasies : manifestations 0f the mythological unconscious -- African-American dreaming and the "lion in the path" : racism and the cultural unconscious -- "Hapless" the Centaur : an archetypal image, amplification, and active imagination -- Pegasus and visionary experience : from the white winged horse to the "flying red horse" -- The bull, the labyrinth, and the Minotaur : from archaeology to (...) "archetypology" (with an apology to Ariadne) -- Griffins, gold, and dinosaurs : mythology and "fantastic paleontology" -- Dreaming of a unicorn : a comparison of Lacanian and Jungian interpretation -- "Destiny" and the call to heroism : a dream of vocation and individuation -- List of publications by Michael Vannoy Adams. (shrink)

This chronological collection of Moore's most compelling and dramatic images, taken as the movement progressed through Alabama, Mississippi, Tennessee, and Georgia, highlights activity from 1958 to 1965. Included are the iconic scenes of black protestors huddled in a doorway to escape the crippling blasts of fire hoses in Birmingham; a white bigot swinging a baseball bat seconds before cracking it on the head of a black woman during the desegregation of the Capitol Cafeteria in Montgomery; a young and stunned Dr. (...) Martin Luther King Jr. pinned to the counter of a police precinct, his arm twisted behind his back; the devastating aftermath of "Bloody Sunday" on the Edmund Pettus Bridge in Selma; and Bull Connor's police dogs tearing mercilessly at the legs of a protestor in downtown Birmingham. Celebrity protestors--comedian Dick Gregory, poet Galway Kinnell, singers Joan Baez, Mary Travers, Pete Seeger, and Harry Bellafonte, actor Pernell Roberts, and writer James Baldwin--are featured alongside the many nameless but committed participants and the recognized major leaders of the movement. (shrink)

Introduction -- Part 1. The nature of order in world politics: the concept of order in world politics; does order exist in world politics?; how is order maintained in world politics?; order versus justice in world politics -- Part 2. Order in the contemporary international system: the balance of power and international order; international law and international order; diplomacy and international order; war and international order; the great powers and international order -- Part 3. Alternative paths to world order: alternatives (...) to the contemporary states system; the decline of the states system; the obsolescence of the states system; the reform of the states system; conclusion. (shrink)

Malcolm Bull offers a detailed analysis of nihilism in Nietzsche's works. Along with accompanying commentaries by Cascardi and Clark, he explores the significance of Nietzscheís views given the fact that a wide range of readers have come to embrace his ideas as new orthodoxy. There seem to be no anti-Nietzscheans today, but Bull demonstrates that this wide embrace of Nietzsche runs counter to the very meaning of nihilism as Nietzsche understood it.

In this paper I outline the PAIR account of joint attention as a perceptual-practical, affectively charged intentional relation. I argue that to explain joint attention we need to leave the received understanding of propositions and propositional attitudes and the picture of content connected to it behind and embrace the notions of subject mode and position mode content. I also explore the relation between joint attention and communication.

Nietzsche remains what he wanted to be - the limit-philosopher of a modernity that never ends. This book argues that merely to reject Nietzsche is not to escape his lure. His appeals to our desire for victory, our creativity, our very humanity are seductions we cannot resist simply by disagreeing with him.

Morals from Motives develops a virtue ethics inspired more by Hume and Hutcheson's moral sentimentalism than by recently-influential Aristotelianism. It argues that a reconfigured and expanded "morality of caring" can offer a general account of right and wrong action as well as social justice. Expanding the frontiers of ethics, it goes on to show how a motive-based "pure" virtue theory can also help us to understand the nature of human well-being and practical reason.

This book fills a gap in studies of meaning by providing detailed case studies of attested corpus data on the meanings of words and phrases.

The American Journal of Bioethics, Volume 12, Issue 7, Page 27-30, July 2012.

Chapter i The study of moral judgement The contemporary scene We are witnessing today a dramatic growth of interest in the processes of giving moral ...

Theories of discourse bring to realism new ideas about how knowledge develops and how representations of reality are influenced. We gain an understanding of the conceptual aspect of social life and the processes by which meaning is produced. This collection reflects the growing interest realist critics have shown towards forms of discourse theory and deconstruction. The diverse range of contributions address such issues as the work of Derrida and deconstruction, discourse theory, Eurocentrism and poststructuralism. What unites all of the contributions (...) is a sense that it is essential to provide a realist alternative to the hitherto dominance of social constructionism, hermeneutics and postmodernism, over many of the issues discussed. By developing a realist perspective the different authors attempt to embed discourse within the structured nature of the reality of the world. Realism can situate language, discourse and ideology within context specific, or 'causally efficacious' circumstances. Realism can help to uncover issues of power, representation, and subjectivity and how discursive and other social practices produce real effects. This can help us understand the manner in which social structures are reproduced through various forms of ideology and discourse. And by knowing this, we can start to address questions concerning human emancipation and how the world is to be transformed. (shrink)

The definitive work on the philosophical nature and impact of the theories of Charles Darwin, written by a well-known authority on the history and philosophy of Darwinism. Broadly explores the theories of Charles Darwin and Darwin studies Incorporates much information about modern Biology Offers a comprehensive discussion of Darwinism and Christianity – including Creationism – by one of the leading authorities in the field Written in clear, concise, user-friendly language supplemented with quality illustrations Examines the status of evolutionary theory as (...) a genuine theory and its implications for philosophy, epistemology and ethics Provides a strong understanding of the philosophical nature and impact of Darwin's thought Holds wide appeal for general audiences outside the world of academic philosophy Strongly supports Darwinism and fully explores modern naturalistic explanations of religion. (shrink)

Michael Quante focuses on what Hegel has to say about such central concepts as action, person and will, and then brings these views to bear on contemporary debates in analytic philosophy. This book enables professional analytic philosophers and their students to understand the significance of Hegel's philosophy to contemporary theory of action. As such, it will contribute to the ever-increasing erosion of the barrier between the continental and analytic approaches to philosophy.

How can a critical analysis of entrepreneurial intention inform an appreciation of ethics in social enterprise business models? In answering this question, we consider the ethical commitments that inform entrepreneurial action and the hybrid organisations that emerge out of these commitments and actions. Ethical theory can be a useful way to reorient the field of social enterprise so that it is more critical of bureaucratic and market-driven enterprises connected to neoliberal doctrine. Social enterprise hybrid business models are therefore reframed as (...) outcomes of both ethical and entrepreneurial intentions. We challenge the dominant conceptualisation of social enterprise as a hybrid blend of mission and market by reframing hybridity in terms of the moral choice of economic system and social value orientation. We deconstruct the political foundations of charitable trading activities, co-operative and mutual enterprises and socially responsible businesses by examining the rationalities and ethical commitments that underpin them. Whilst conceptual modelling of social enterprise is not new, this paper contributes to knowledge by developing a theory of social enterprise ethics based on the moral/political choices that are made by entrepreneurs when choosing between systems of economic exchange and social value orientation, then expressing it through a legal form. (shrink)

Divided into four parts, this treatise begins with well-known criticisms of nonreligious ethics and then develops an atheistic metaethics. In Part 2, Martin criticizes the Christian foundation of ethics, specifically the ’divine command theory’ and the idea of imitating the life of Jesus as the basis of Christian morality. Part 3 demonstrates that life can be meaningful in the absence of religious belief. Part 4 criticizes the theistic point of view in general terms as well as the specific Christian doctrines (...) of the atonement, salvation, and the resurrection. (publisher, edited). (shrink)