M. Smith

Research conducted during epidemics may warrant adaptations or adaptive designs owing to practical constraints, time pressures, uncertainty, the importance of flexibility, and the potential for research to detract from epidemic response. Adapting research entails choosing different research designs or methods if research goals, contexts or constraints justify or require a different approach. Adaptive research, by contrast, is a type of research that prospectively plans for modifications after research has been initiated, while maintaining the validity and integrity of the research. While adaptation and adaptive designs introduce an important degree of flexibility to research conducted during epidemics and help to address research objectives and constraints, adaptation and adaptive designs require close ethical scrutiny and are no different from other research in that they are expected to align with universally accepted ethical standards. Important ethical questions exist regarding the conditions that justify adaptations to research, the kinds of adaptive research designs that can be ethically justified, and how ethics review bodies ought to evaluate such novel approaches to research in epidemic contexts. The five cases included in this chapter prompt reflection on the ethical considerations and implications of adapting research in response to epidemic-related risks and the public health measures deployed in response to those risks, as well as the ethical implications of not adapting research in such contexts. These cases also highlight ethical questions and issues arising during the conduct of adaptive trials, including when treatments under study, treatment doses, sample size, and other study features are reviewed in response to evolving evidence. This chapter invites reflection on these key ethical dimensions when considering adaptive designs and adaptations to standard research procedures during epidemics. What these cases make clear is that adaptive designs and adaptations to research do not reduce the need for rigorous scientific evaluation and adherence to universal ethical standards, and must be explicitly ethically justified and reviewed through transparent and inclusive processes.

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.

Some organisations make vaccination a condition of employment. This means prospective employees must demonstrate they have been vaccinated (eg, against measles) to be hired. But it also means organisations must decide whether _existing_ employees should be expected to meet newly introduced vaccination conditions (eg, against COVID-19). Unlike prospective employees who will not be _hired_ if they do not meet vaccination conditions, existing employees who fail to meet new vaccination conditions risk being _fired_. The latter seems worse than the former. Hence, objections to vaccination mandates commonly centre on the harms that will be visited on existing employees who are unwilling to be vaccinated. However, because this objection does not necessarily entail the claim that vaccination is unnecessary for the effective and safe performance of certain jobs, those making this objection should have less of an objection, or no objection at all (at least on these grounds), to introducing vaccination requirements in some cases for _prospective_ employees. Yet, in this paper, I shall argue that if one has reason to believe vaccination requirements can be justified for prospective employees, one should also believe they are justified for existing employees _despite_ any asymmetry in consequences experienced by the two groups. As a consequence, common objections made against vaccination mandates grounded solely in the harms that may be experienced by existing employees who are unwilling to be vaccinated should be considered unpersuasive.

IntroductionThe value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes.MethodsWe conducted a scoping review to summarize the available empirical literature on the experiences of families in the context of trisomy 13 and 18 (T13/18) with subsequent thematic analysis of the 17 included articles.FindingsThemes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time.InterpretationOur thematic analysis was guided by the moral experience framework conceived by Hunt and Carnevale (2011) in association with the VOICE (Views On Interdisciplinary Childhood Ethics) collaborative research group.RelevanceThis article will be of interest and value to healthcare professionals and bioethicists who support families navigating the medically and ethically complex landscape of T13/18.

In his 2000 book, From Chaos to Coercion: Detention and the Control of Tuberculosis, Richard Coker makes a number of important observations and arguments regarding the use of coercive public health measures in response to infectious disease threats. In particular, Coker argues that we have a tendency to neglect public health threats and then demand immediate action, which can leave policymakers with fewer effective options and may require (or may be perceived as requiring) more aggressive, coercive measures to achieve public health goals. While Coker makes a convincing case as to why we should find it ethically problematic when governments find themselves in this position and resort to coercion, left outstanding is the question of whether this should preclude governments and health authorities from using coercion if and when they do find themselves in this position. In this paper, I argue that, while we should consider it ethically objectionable when governments resort to coercion because they have neglected a public health threat, its causes, and other possible responses to that threat, this should not then necessarily rule out the use of coercion in such circumstances; that there are ethically objectionable antecedents for why coercion is being considered should not necessarily or automatically cause us to think coercion in such cases cannot be justified. I address an objection to this argument and draw several conclusions about how governments’ use of coercion in public health should be evaluated.

The ' state of nature ' could be understood in two senses; both in terms of its nature 's current condition and of that unmediated and pre-contractual relation between humanity and the environment posited by political philosophers like Locke and Rousseau and now championed by anarcho- primitivism. Primitivism is easily dismissed as an extreme, naïve and impractical form of radical environmentalism but its emergence signifies contemporary disaffection with the ideology of 'progress' so central to modernity and capitalism. This paper offers an ethico-political interpretation of primitivism 's critical relation to modernity in terms of the dialectic between amorality and immorality within what is characterised as modernity's ' culture of contamination '.

Language is commonly regarded as an exclusively human attribute and the possession of the word has long served to demarcate culture from nature. This is often taken to imply that nature is incapable of meaningful expression, that any meaning it acquires is merely bestowed upon it by humanity. This anthropic logocentrism seriously undermines those forms of 'environmental advocacy' which claim to find and speak of the meaning and value of nature perse. However, shorn of their own anthropocentric presuppositions, the expressivist hermeneutics of Hans-Georg Gadamer and Walter Benjamin might offer an alternative understanding of the nature of language and the language of nature

Technology regulation is one of the most important public policy issues facing society and governments at the present time, and further clarity could improve decision making in this complex and challenging area. Since the rise of the internet in the late 1990s, a number of approaches to technology regulation have been proposed, prompted by the associated changes in society, business and law that this development brought with it. However, over the past decade, the impact of technology has been profound and the associated issues for government have extremely challenging, ranging across cyber security, artificial intelligence, and many other areas. To that end, this article introduces a Theory of Institutional Technology Actors and Norms (TITAN), a normatively informed and institutionally-based account of technology regulation. It focuses on the moral and legal (including regulatory) rights and responsibilities of the relevant actors and seeks to inform the development of regulation that is both fit for purpose, rights compliant and fair for all concerned. The account incorporates the perspectives of four key categories of groups in society: producers of technology, users of technology, government regulators, and normative policy shapers.

Forensic genomics now enables law enforcement agencies to undertake rapid and detailed analysis of suspect samples using a technique known as massively parallel sequencing (MPS), including information such as physical traits, biological ancestry, and medical conditions. This article discusses the implications of MPS and provides ethical analysis, drawing on the concept of joint rights applicable to genomic data, and the concept of collective moral responsibility (understood as joint moral responsibility) that are applicable to law enforcement investigations that utilize genomic data. The widespread and unconstrained use of this technology without appropriate legal protections of individual moral rights and associated accountability mechanisms, could potentially not only involve violations of individual moral rights but also lead to an unacceptable shift in the balance of power between governments and the citizenry. We argue that in light of the rights of victims and the security benefits for society, there is a collective moral responsibility for individuals to submit their DNA to law enforcement and for MPS to be used where other, less invasive techniques are not effective. However, this application should be limited by legislation, including that any data obtained should be directly relevant to the investigation and should be destroyed at the conclusion of the investigation.

The power and the promise of deep ecology is seen, by its supporters and detractors alike, to lie in its claims to speak on behalf of a natural world threatened by human excesses. Yet, to speak of trees as trees or nature as something worthy of respect in itself has appeared increasingly difficult in the light of social constructivist accounts of “nature.” Deep ecology has been loath to take constructivism’s insightsseriously, retreating into forms of biological objectivism and reductionism. Yet, deep ecology actually has much in common with, and much to gain from, some varieties of constructivism and can add a new dimension to constructivism’s own critique of current ideologies.

Biometric facial recognition is an artificial intelligence technology involving the automated comparison of facial features, used by law enforcement to identify unknown suspects from photographs and closed circuit television. Its capability is expanding rapidly in association with artificial intelligence and has great potential to solve crime. However, it also carries significant privacy and other ethical implications that require law and regulation. This article examines the rise of biometric facial recognition, current applications and legal developments, and conducts an ethical analysis of the issues that arise. Ethical principles are applied to mediate the potential conflicts in relation to this information technology that arise between security, on the one hand, and individual privacy and autonomy, and democratic accountability, on the other. These can be used to support appropriate law and regulation for the technology as it continues to develop.

This article considers individual rights and fundamental tenets of the criminal justice system in the context of DNA evidence, in particular recent advancements in genomics that have significantly advanced law enforcement investigative capabilities in this area. It discusses a technique known as Investigative Genetic Genealogy (IGG) which utilizes genomic data held by commercial direct-to-consumer ancestry and health companies to investigate the identity of suspects linked to serious crimes. Using this technique, even if only a small proportion of the population (e.g. 5%) has submitted genomic data to these companies, almost anyone in the population can be identified. We discuss this phenomenon in the context of the existing literature and arguments in relation to universal forensic DNA databases, as well as relevant recent developments in both liberal democracies and authoritarian states. We introduce the concept of a quasi-universal forensic DNA database and consider associated implications for the criminal justice system and society from the perspectives of privacy, the right not to self-incriminate, joint rights, and collective responsibility.

The COVID‐19 pandemic has infected millions around the world. Governments initially responded by requiring businesses to close and citizens to self‐isolate, as well as funding vaccine research and implementing a range of technologies to monitor and limit the spread of the disease. This article considers the use of smartphone metadata and Bluetooth applications for public health surveillance purposes in relation to COVID‐19. It undertakes ethical analysis of these measures, particularly in relation to collective moral responsibility, considering whether citizens ought, or should be compelled, to comply with government measures.

Mr. F. is a fifty‐year‐old father of two school‐aged daughters. Six years ago, he received a double lung transplant because he was suffering from interstitial lung disease, a fatal illness that causes suffocation by progressive scarring of the lungs. He is now experiencing chronic rejection of the transplant and is being considered to receive another. Without it, he is expected to survive only a year and a half. With it, his prognosis will improve, but the numbers are still not good. Three years after his lung transplant, Mr. F. stopped attending his office visits. For a period of sixteen months he went without the studies and attention essential to posttransplant care. He stopped performing the required daily self‐monitoring of his lung function about eight months after his transplant, but he has maintained a regular exercise regimen. While lost to follow‐up, he continued to take his immunosuppressant medications, but he stopped taking medicine to control his high blood pressure because of its expense.

The natural world’s myriad differences from human beings, and its apparent indifference to human purposes and ends, are often regarded as problems an environmental ethics must overcome. Perhaps, though, ecological ethics might instead be re-envisaged as a form of other-directed concern that responds to just this situation. That is, the recognition of worldly (in)difference might actually be regarded as a precondition for, and opening on, any contemporary ethics, whether human or ecological. What is more, the task of ethics might be regarded as one of conserving (at least some) such differences. The work of Iris Murdoch and the “difference ethics” of Emmanuel Levinas seem to offer possible ways to express such understandings. However, their ecological potential and theoretical limits, especially in terms oftheir metaphysical presuppositions, remain relatively under-explored. A closer examination of their work is presented in order to illustrate some of the possibilities and difficulties facing an ecological form of difference ethics

The natural world’s myriad differences from human beings, and its apparent indifference to human purposes and ends, are often regarded as problems an environmental ethics must overcome. Perhaps, though, ecological ethics might instead be re-envisaged as a form of other-directed concern that responds to just this situation. That is, the recognition of worldly (in)difference might actually be regarded as a precondition for, and opening on, any contemporary ethics, whether human or ecological. What is more, the task of ethics might be regarded as one of conserving (at least some) such differences. The work of Iris Murdoch and the “difference ethics” of Emmanuel Levinas seem to offer possible ways to express such understandings. However, their ecological potential and theoretical limits, especially in terms oftheir metaphysical presuppositions, remain relatively under-explored. A closer examination of their work is presented in order to illustrate some of the possibilities and difficulties facing an ecological form of difference ethics.

The power and the promise of deep ecology is seen, by its supporters and detractors alike, to lie in its claims to speak on behalf of a natural world threatened by human excesses. Yet, to speak of trees as trees or nature as something worthy of respect in itself has appeared increasingly difficult in the light of social constructivist accounts of “nature.” Deep ecology has been loath to take constructivism’s insightsseriously, retreating into forms of biological objectivism and reductionism. Yet, deep ecology actually has much in common with, and much to gain from, some varieties of constructivism and can add a new dimension to constructivism’s own critique of current ideologies

Modern Western thought and culture have envisaged their task in terms of a metaphorics, a metaphysics and a technics of 'enlightenment'. However, the ethical and environmental implications of this determination to dispel all shadows have become increasingly pernicious as modernity both extends and alters the conceptualization and employment of (a now artificial) light as a tool of discovery and control. Drawing on the work of Foucault and Benjamin amongst others, this paper seeks to illustrate, through a critical ethopoietics, the 'speculative aporia' of contemporary society from the perspective of radical ecology. The world does not just reflect our own instrumental interests: it has an elusive, shadowy existence of its own that can impinge upon our ethical perceptions.

If, as Lefebvre argues, every society produces its own social space, then modernity might be characterized by that (anti-)social and instrumental space epitomized and idealized in Le Corbusier's writings. This repetitively patterned space consumes and regulates the differences between places and people; it encapsulates a normalizing morality that seeks to reduce all differences to an economic order of the Same. Lefebvre's dialectical conceptualization of 'difference' can both help explain the operation of this (im)moral landscape and offer the possibility of alternative post-modern social spaces that might produce and respect Otherness. In this sense Lefebvre's work is an incipient 'difference ethics'.