Can we deploy creative practices to critically address the fatal interlocking of global surveillance technologies, neo-colonial expansionism, environmental degradation and the lethal threat of drone warfare? Throughout the following conversation, Shona Illingworth and Anthony Downey examine these and other questions in relation to the recent publication of Topologies of Air (Sternberg Press and The Power Plant, 2022). Edited by Downey, the book includes discussion and documentation of two major bodies of work by Illingworth, including Topologies of Air (...) (2021) and Lesions in the Landscape (2015), alongside an extended series of essays that analyse the psychological and environmental impact of military, industrial and corporate transformations of airspace and outer space. Employing interdisciplinary research and collaborative processes, Illingworth’s practice, as detailed in the discussion below, uses creative methodologies to visualize and interrogate this proliferating exploitation of airspace. The conversation between Illingworth and Downey also outlines the work of the Airspace Tribunal, an ongoing series of public hearings that brings together diverse disciplines, methodologies, knowledge and lived experiences to propose a new human right that will counter the colonization of the sky and, in time, protect individuals, communities and ecologies from ever-increasing threats from above. (shrink)

IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical evidence addressing patients’ (...) and public views and attitudes towards the use of health data for research purposes. The literature databases PubMed, Embase, Scopus and Google Scholar were searched in April 2019 to identify relevant publications. Patients’ and public attitudes were extracted from selected references and thematically categorised.ResultsTwenty-seven papers were included for review, including both qualitative and quantitative studies and systematic reviews. Results suggest widespread—though conditional—support among patients and the public for data sharing for health research. Despite the fact that participants recognise actual or potential benefits of data research, they expressed concerns about breaches of confidentiality and potential abuses of the data. Studies showed agreement on the following conditions: value, privacy, risk minimisation, data security, transparency, control, information, trust, responsibility and accountability.ConclusionsOur results indicate that a social license for data-intensive health research cannot simply be presumed. To strengthen the social license, identified conditions ought to be operationalised in a governance framework that incorporates the diverse patient and public values, needs and interests. (shrink)

Pragmatic trials aim to directly inform health care decision-making through the collection of so-called ‘real world data’ from observations of comparative treatment effects in clinical practice. In order to ensure the applicability and feasibility of a pragmatic trial, design features may be necessary that deviate from standard research ethics requirements. Examples are traditional requirements to seek written informed consent and to perform extensive data and safety monitoring. Proposals for deviations from standard research ethics practice have resulted in controversy about their (...) ethical acceptability. One of the justifications for altered procedures is the allegedly high social value of pragmatic trials. In order to properly operationalize the concept in the ethical assessment of pragmatic trial designs, specification is warranted. We identified three determinants from common claims about a pragmatic trial's social value: the extent to which the research question has real world relevance, the trial design's ability to generate a real world answer and the probability of direct uptake of the results by decision-makers in practice. Subsequently, we discuss how these determinants should be applied to the practice of pragmatic trials, and to what extent they might be applicable to explanatory trials. (shrink)

Large-scale linkage of international clinical datasets could lead to unique insights into disease aetiology and facilitate treatment evaluation and drug development. Hereto, multi-stakeholder consortia are currently designing several disease-specific translational research platforms to enable international health data sharing. Despite the recent adoption of the EU General Data Protection Regulation, the procedures for how to govern responsible data sharing in such projects are not at all spelled out yet. In search of a first, basic outline of an ethical governance framework, we (...) set out to explore relevant ethical principles and norms. We performed a systematic review of literature and ethical guidelines for principles and norms pertaining to data sharing for international health research. We observed an abundance of principles and norms with considerable convergence at the aggregate level of four overarching themes: societal benefits and value; distribution of risks, benefits and burdens; respect for individuals and groups; and public trust and engagement. However, at the level of principles and norms we identified substantial variation in the phrasing and level of detail, the number and content of norms considered necessary to protect a principle, and the contextual approaches in which principles and norms are used. While providing some helpful leads for further work on a coherent governance framework for data sharing, the current collection of principles and norms prompts important questions about how to streamline terminology regarding de-identification and how to harmonise the identified principles and norms into a coherent governance framework that promotes data sharing while securing public trust. (shrink)

In the dissertation I provide an account of action descriptions which emphasizes their role as explanations of consequences. By showing that consequences are ascribed to an action under a description, and only when that description can explain the consequence, I undermine the view that consequences are brute events. Roughly, I reason as follows. If consequences were brute events, then their ascription to an action wouldn't hinge on how we understand the action. We could, for instance, say in ordinary circumstances "John (...) tensed his finger" and as a consequence "Mary became a widow" without any untowardness at all. I show both that we do not do this and that we cannot do it. That we do not do it is supported primarily by linguistic intuitions; mainly I show that there is an infelicity in ascribing to an action a consequence which is not explained by that action. To support the claim that we cannot do this I argue that if there were no "fit" between action and consequence that would make communication difficult. ;I then use this characterization of action descriptions and consequences to serve as a criterion for identifying the privileged description of an action. Any one action may have several action descriptions. In light of this, there is a question raised about which, if any, of these descriptions is privileged. I show that within the wider social context there is a description of the action which is dominant. Then I argue that this description is and should be chosen in virtue of the explanatory power of action descriptions with respect to consequences. (shrink)

This Is A New Release Of The Original 1905 Edition.

Machine generated contents note: -- Acknowledgements -- Introduction -- Overcoming Indifference -- Social Capital -- Ethics for Enduring Social Capital -- Social Capital and Happiness -- Social Capital and Law -- Giving Back -- Global People -- Bibliography -- Index.

Recent figures show that 151.7 million nonelderly Americans who had private insurance received that insurance from their employers (out of 167.5 million with private insurance). Employers who contract with health plans on behalf of their employees influence the health of their employees and, in turn, the nature and quality of the healthcare system in the United States. Despite the magnitude of their influence, they have been relatively free from both government and ethical guidance with respect to the specific substantive benefits (...) they offer their employees. Employers have enormous discretion with respect to what substantive benefits they include in employer health plans because they are governed by the Employment Retirement Security Act (ERISA). But the decisions that employers make when they choose benefits for their employees are just as much rationing decisions in need of bioethical analysis as are the rationing decisions that are made at the bedside by patients, physicians, and their families. Moreover, even strong discretion, of the kind employers have, is subject to ethical standards. (shrink)

Purpose – The purpose of this study is to explore Australian public and stakeholders views towards the regulation of the Internet and its content. The federal government called for submissions addressing their proposal, and this paper analyses these submissions for themes and provides clarity as to the Australian public and stakeholders key concerns in regards to the proposed policy. Design/methodology/approach – The paper uses a qualitative approach to analyse the public consultations to the Australian Federal Government. These documents are coded (...) and analysed to determine negative and positive viewpoints. Findings – The research has shown, based upon the analysis of the consultation, that there was no public support for any of the measures put forward, that the Australian Federal Government in its response has not recognised this public feedback and instead has only utilised some of the qualitative feedback obtained through the public consultation process to try to justify its case to proceed with its proposals. Research limitations/implications – The study is focussed on Australia. Practical implications – The paper analyses a proposed national approach to filtering the content of the Internet and discussed the public reaction to such an approach. Social implications – The paper looks at how different parts of Australian society view Internet filtering in a positive or negative manner. Originality/value – The only study that directly looks at the viewpoint of the Australian public. (shrink)

With a sound mixture of common sense and clear-sighted temperance, 'Political Justice' reconstructs classical philosophy through direct dialogue with modern liberalism, dismantling the fallacies and follies of the latter brick by brick, even while rediscovering the principles of a just political order.

In GIVING WELL: THE ETHICS OF PHILANTHROPY, an accomplished trio of editors bring together an international group of distinguished philosophers, social scientists, lawyers and practitioners to identify and address the most urgent moral questions arising today in the practice of philanthropy.

This article draws on the free‐text commentaries from trans‐Tasman studies that used the MISSCARE questionnaire to explore the reasons why nurses miss care. In this paper, we examine the idea that nurses perpetuate a self‐effacing approach to care, at the expense of patient care and professional accountability, using what they describe as the art of nursing to frame their claims of both nursing care and missed nursing care. We use historical dialogue alongside a paradigmatic analysis to examine why nurses allow (...) themselves to continue working within settings that put their professional/personal selves aside in an attempt to deliver care within constraints that make completing care an impossible task. The findings suggest an ambivalence and conflict confront nurses attempting to provide care within the New Public Management environment. This can be seen in the tensions that draw a line between care as an art, and care as a financial target, juxtaposed with the inherent clash of values arising from the way nursing care is conceptualised within two contradictory paradigms. (shrink)

In this paper, we provide an overview of how the outcomes of the Uruguay Round affected the application of pharmaceutical intellectual property rights globally. Second, we explain how specific pharmaceutical policy tools can help developing states mitigate the worst effects of the TRIPS Agreement. Third, we put forward solutions that could be implemented by the World Bank to help overcome the divide between creating private incentives for research and development of innovative medicines and ensuring access of the poor to medicine. (...) Fourth, we evaluate these solutions on the basis of utilitarian considerations and urge that equitable pricing is morally preferable to the other solutions. (shrink)

Issues of balancing data accessibility with ethical considerations and governance of a genomics research biobank, Generation Scotland, are explored within the evolving policy landscape of the past ten years. During this time data sharing and open data access have become increasingly important topics in biomedical research. Decisions around data access are influenced by local arrangements for governance and practices such as linkage to health records, and the global through policies for biobanking and the sharing of data with large-scale biomedical research (...) data resources and consortia. We use a literature review of policy relevant documents which apply to the conduct of biobanks in two areas: support for open access and the protection of data subjects and researchers managing a bioresource. We present examples of decision making within a biobank based upon observations of the Generation Scotland Access Committee. We reflect upon how the drive towards open access raises ethical dilemmas for established biorepositories containing data and samples from human subjects. Despite much discussion in science policy literature about standardisation, the contextual aspects of biobanking are often overlooked. Using our engagement with GS we demonstrate the importance of local arrangements in the creation of a responsive ethical approach to biorepository governance. We argue that governance decisions regarding access to the biobank are intertwined with considerations about maintenance and viability at the local level. We show that in addition to the focus upon ever more universal and standardised practices, the local expertise gained in the management of such repositories must be supported. A commitment to open access in genomics research has found almost universal backing in science and health policy circles, but repositories of data and samples from human subjects may have to operate under managed access, to protect privacy, align with participant consent and ensure that the resource can be managed in a sustainable way. Data access committees need to be reflexive and flexible, to cope with changing technology and opportunities and threats from the wider data sharing environment. To understand these interactions also involves nurturing what is particular about the biobank in its local context. (shrink)

In this paper, I claim that the doctor-patient relationship can be viewed as a vessel of trust. Nonetheless, trust within the doctor-patient relationship has been impaired by managed care. When we conceive of trust as social capital, focusing on the role that it plays in individual and social well-being, trust can be viewed as a public good and a scarce medical resource. Given this, there is a moral obligation to protect the doctor-patient relationship from the cost-containment mechanisms that compromise its (...) ability to produce trust. (shrink)

Although the right to health is universal, many nations that honor it fail to do so in the case of non-citizen immigrants. In this essay, we argue that the reasons typically given for not extending the right to health to immigrants are without merit and that there are good reasons for nations to protect, respect and fulfill the health right of all immigrants. Contrary to the standard view, we argue that health can be understood as a global public good. Two (...) important points follow: because health is non-excludable and non-rivalrous, it is in the health interests of nations to respect, protect and fulfill immigrants’ right to health. Furthermore, meeting the health needs of immigrants is an important way for receiving nations to meet the duties that may be generated by the benefits they incur as a result of health’s global public good dimension, thus ensuring that receiving nations are not free riders. We then argue that because citizens and immigrants dwell together, nations have duties of solidarity to immigrants with respect to health. Using the insights of social psychology, we show that solidarity among diverse people is both a reasonable expectation and a morally desirable one. (shrink)

Dr. Wayne proposes that an autonomy-based approach to the treatment and care of older patients with dementia be replaced with an agency-based approach. In this commentary, I suggest that such a shift is unnecessary and would undermine patients’ moral, legal, and human rights.

Purpose The information society has developed rapidly since the end of the twentieth century. Many countries (including Australia) have been looking at ways to protect their citizens against the variety of risks associated with the continued evolution of the internet. The Australian Federal Government in 2013 proposed data retention as one possible method of protecting Australian society and aiding law enforcement agencies to investigate and prosecute cyber-crime. Design/methodology/approach The aim of this paper is to consider the issue of data retention (...) from a stakeholder’s perspective by analysing the public submissions garnered by the Australian Federal Government and identify the key issues and concerns that were raised by these stakeholders. The paper used a qualitative approach to undertake theme analysis. Findings The paper shows the concerns and wishes that different stakes holders have regarding data retention within Australia. Originality/value This is a unique study into implementation of data retention at a national level, in terms of the paper focussing on Australia. (shrink)

I argue that because bluffing, puffing, and spinning are features of corporate life, they are likely to characterize the doctor-patient relationship in managed care medicine. I show that managed-care organizations (MCOs) and the physicians who contract with them make liberal use of puffing and spinning. In this way, they create a context in which it is likely that patients will also use deceptive mechanisms. Unfortunately, patients risk their health when they deceive their doctors. Using the warranty theory of truth I (...) argue that although bluffing may be ethical in business because all participants agree to it and business has not warranted truth-telling, it is not ethical in a medical context because physicians and MCOs have warranted truth-telling and the quality of medical care depends on it. (shrink)

It is unclear that United States schools are doing sufficient work to identify and protect the interests of their LGB students this analysis, we rely on certain public-health research in social epidemiology to show that discrimination against LGB adolescents imposes morally significant harms to both adolescents and community. We apply "trust” and “social capital” to educational standards and practices as foundations for educational practices that work toward full equality of LGB students in regard to opportunity and other primary social goods.

Offering a format that is significantly different than that offered by other books, Ethical Health Care beings by asking what is meant by health and how it is achieved. The book then proceeds to explore with care and context the nature of the relationship between patients and clinicians, health care providers and the societies in which they inhabit, and finally the relationship between the health care enterprise and the international community. By emphasizing the ethical issues that arise in the broad (...) quest to foster human health, and appreciating that health is not primarily a function of medical interventions, Ethical Health Care introduces students to problems such as the international distribution of pharmaceuticals and the dangers of reemerging infections. To a far greater extent than is done traditionally, Ethical Health Care provides an interdisciplinary perspective to bioethics, relying heavily upon the teachings of economics, law, and public health. (shrink)

This comment on Professor ter Meulen's paper, "Solidarity and Justice in Health Care," offers additional perspectives on solidarity's importance for health. Noting the findings of social epidemiology, the paper explains that health has important public good dimensions. It is both non-rivlalrous because one person's health does not diminish another's, and it is largely determined by non-excludable access goods, including social networks, social determinants, and public health efforts. The public good dimension of health underscores the mutual dependence and shared stake that (...) people have with respect to health, and highlights the importance of coming together in solidarity for the sake of health. This is not to say that solidarity cannot also foster exclusionary tendencies; however, the recognition of mutual dependency with respect to health can foster an inclusive solidarity for the health of all people. (shrink)

In his well‐researched new book, Solidarity and Justice in Health and Social Care, Ruud ter Meulen traces the history of the concept of solidarity and describes the important role that it can play in health care. He contrasts solidarity with other normative concepts, such as autonomy and justice. According to ter Meulen, solidarity entails a commitment and willingness to help others who are “in need of it due to circumstances out of their control” (p. 170). Thus, solidarity exists when people (...) act for the sake of other people who are vulnerable in some way. Ter Meulen treats solidarity as a distinct normative concept and believes that it is critical for health care. No doubt insofar as social ties and cohesion are good for health, so is solidarity. (shrink)

Purpose The aim of the paper is to assess the hacktivist group called the Syrian Electronic Army and determine what their motivations in terms of ethical and poetical motivations. Design/methodology/approach This paper looks at chronological examples of Syrian Electronic Army activities and assess them using a developed hacktivist criteria to try and gain a greater understanding of the motivations of the Syrian Electronic Army. The paper uses a netnography research approach. Findings This paper determines that the Syrian Electronic Army is (...) motivated to protect the Syrian Government. This protection is highlighted by the new media and social media organisations that the Syrian Electronic Army attacks online. Research limitations/implications This paper focuses only on one group the Syrian Electronic Army. Practical implications A greater understanding of the Syrian Electronic Army. Social implications A greater understanding of the development of hacktivism. Originality/value A unique study into the motivation of the Syrian Electronic Army. (shrink)

Experiential evidence shows that pain is associated with common meanings. These include a meaning of threat or danger, which is experienced as immediately distressing or unpleasant; cognitive meanings, which are focused on the long-term consequences of having chronic pain; and existential meanings such as hopelessness, which are more about the person with chronic pain than the pain itself. This interdisciplinary book - the second in the three-volume Meanings of Pain series edited by Dr Simon van Rysewyk - aims to better (...) understand pain by describing experiences of pain and the meanings these experiences hold for the people living through them. The lived experiences of pain described here involve various types of chronic pain, including spinal pain, labour pain, rheumatic pain, diabetic peripheral neuropathic pain, fibromyalgia, complex regional pain syndrome, endometriosis-associated pain, and cancer-related pain. Two chapters provide narrative descriptions of pain, recounted and interpreted by people with pain. Language is important to understanding the meaning of pain since it is the primary tool human beings use to manipulate meaning. As discussed in the book, linguistic meaning may hold clues to understanding some pain-related experiences, including the stigmatisation of people with pain, the dynamics of patient-clinician communication, and other issues, such as relationships between pain, public policy and the law, and attempts to develop a taxonomy of pain that is meaningful for patients. Clinical implications are described in each chapter. This book is intended for people with pain, their family members or caregivers, clinicians, researchers, advocates, and policy makers. (shrink)

BackgroundThe rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social (...) licence for achieving such ethical governance.Main textWe performed a narrative review of the social licence as presented in the biomedical literature. We used a systematic search and selection process, followed by a critical conceptual analysis. The systematic search resulted in nine publications. Our conceptual analysis aims to clarify how societal permission can be granted to health research projects which rely upon the reuse and/or linkage of health data. These activities may be morally demanding. For these types of activities, a moral legitimation, beyond the limits of law, may need to be sought in order to preserve trust. Our analysis indicates that a social licence encourages us to recognise a broad range of stakeholder interests and perspectives in data-intensive health research. This is especially true for patients contributing data. Incorporating such a practice paves the way towards an ethical governance, based upon trust. Public engagement that involves patients from the start is called for to strengthen this social licence.ConclusionsThere are several merits to using the concept of social licence as a guideline for ethical governance. Firstly, it fits the novel scale of data-related risks; secondly, it focuses attention on trustworthiness; and finally, it offers co-creation as a way forward. Greater trust can be achieved in the governance of data-intensive health research by highlighting strategic dialogue with both patients contributing the data, and the public in general. This should ultimately contribute to a more ethical practice of governance. (shrink)

In this paper, we provide an overview of how the outcomes of the Uruguay Round affected the application of pharmaceutical intellectual property rights globally. Second, we explain how specific pharmaceutical policy tools can help developing states mitigate the worst effects of the TRIPS Agreement. Third, we put forward solutions that could be implemented by the World Bank to help overcome the divide between creating private incentives for research and development of innovative medicines and ensuring access of the poor to medicine. (...) Fourth, we evaluate these solutions on the basis of utilitarian considerations and urge that equitable pricing is morally preferable to the other solutions. (shrink)

An increasing number of European research projects return, or plan to return, individual genomic research results (IRR) to participants. While data access is a data subject’s right under the General Data Protection Regulation (GDPR), and many legal and ethical guidelines allow or require participants to receive personal data generated in research, the practice of returning results is not straightforward and raises several practical and ethical issues. Existing guidelines focusing on return of IRR are mostly project-specific, only discuss which results to (...) return, or were developed outside Europe. To address this gap, we analysed existing normative documents identified online using inductive content analysis. We used this analysis to develop a checklist of steps to assist European researchers considering whether to return IRR to participants. We then sought feedback on the checklist from an interdisciplinary panel of European experts (clinicians, clinical researchers, population-based researchers, biobank managers, ethicists, lawyers and policy makers) to refine the checklist. The checklist outlines seven major components researchers should consider when determining whether, and how, to return results to adult research participants: 1) Decide which results to return; 2) Develop a plan for return of results; 3) Obtain participant informed consent; 4) Collect and analyse data; 5) Confirm results; 6) Disclose research results; 7) Follow-up and monitor. Our checklist provides a clear outline of the steps European researchers can follow to develop ethical and sustainable result return pathways within their own research projects. Further legal analysis is required to ensure this checklist complies with relevant domestic laws. (shrink)