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)

Indigenous ethics and feminist care ethics offer a range of related ideas and tools for environmental ethics. These ethics delve into deep connections and moral commitments between nonhumans and humans to guide ethical forms of environmental decision making and environmental science. Indigenous and feminist movements such as the Mother Earth Water Walk and the Green Belt Movement are ongoing examples of the effectiveness of on-the-ground environmental care ethics. Indigenous ethics highlight attentive caring for the intertwined needs of humans and nonhumans (...) within interdependent communities. Feminist environmental care ethics emphasize the importance of empowering communities to care for themselves and the social and ecological communities in which their lives and interests are interwoven. The gendered, feminist, historical, and anticolonial dimensions of care ethics, indigenous ethics, and other related approaches provide rich ground for rethinking and reclaiming the nature and depth of diverse relationships as the fabric of social and ecological being. (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)

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)

On the classical account of evolution by natural selection found in Lewontin and many subsequent authors, ENS is conceived as involving three key ingredients: phenotypic variation, fitness differences, and heredity. Through the analysis of three problem cases involving heredity, I argue that the classical conception is substantially flawed, showing that heredity is not required for selection. I consider further problems with the classical account of ENS arising from conflations between three distinct senses of the central concept of ‘fitness’ and offer (...) an alternative to the classical conception of ENS involving the interaction of distinct evolutionary mechanisms. (shrink)

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)

What is the significance of the wicked problems framework for environmental philosophy? In response to wicked problems, environmental scientists are starting to welcome the participation of social scientists, humanists, and the creative arts. We argue that the need for interdisciplinary approaches to wicked problems opens up a number of tasks that environmental philosophers have every right to undertake. The first task is for philosophers to explore new and promising ways of initiating philosophical research through conducting collaborative learning processes on environmental (...) issues. The second task is for philosophers to recognize the value of philosophical skills in their engagements with members of other disciplines and walks of life in addressing wicked problems. The wicked problems framework should be seen as an important guide for facilitating philosophical research that is of relevance to problems like climate change and sustainable agriculture. Content Type Journal Article Category Articles Pages 1-14 DOI 10.1007/s10806-011-9344-0 Authors Paul B. Thompson, Department of Philosophy, Michigan State University, 503 S. Kedzie Hall, East Lansing, MI 48824, USA Kyle Powys Whyte, Department of Philosophy, Michigan State University, 503 S. Kedzie Hall, East Lansing, MI 48824, USA Journal Journal of Agricultural and Environmental Ethics Online ISSN 1573-322X Print ISSN 1187-7863. (shrink)

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)

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)

Participatory approaches to environmental decision making and assessment continue to grow in academic and policy circles. Improving how we understand the structure of deliberative activities is especially important for addressing problems in natural resources, climate change, and food systems that have wicked dimensions, such as deep value disagreements, high degrees of uncertainty, catastrophic risks, and high costs associated with errors. Yet getting the structure right is not the only important task at hand. Indeed, participatory activities can break down and fail (...) to achieve their specific goals when some of the deliberators lack what we will call participatory virtues. We will argue for the importance of future research on how environmental education can incorporate participatory virtues to equip future citizens with the virtues they will need to deliberate about wicked, environmental problems. What is the role of education for deliberative skills and virtues relative to other aspects of environmental education, such as facts and values education? How important is it relative to careful design of the deliberative process? What virtues really matter? (shrink)

This essay compares two philosophical proposals concerning the relation between values and science, both of which reject the value-free ideal but nevertheless place restrictions on how values and science should interact. The first of these proposals relies on a distinction between the direct and indirect roles of values, while the second emphasizes instead a distinction between epistemic and nonepistemic values. We consider these two proposals in connection with a case study of disputed research on the topic of environmental justice and (...) argue that the second proposal has several advantages over the first. (shrink)

Environmental justice seeks fairness in how environmental burdens and risks are visited on poor people, women, communities of color, Indigenous peoples, minorities, and citizens of developing countries. It also concerns whether members of these same groups have fair access to environmental goods such as urban green spaces, forested areas, and clean water. Environmental goods extend, also, to opportunities to benefit from enterprises such as tourism and green infrastructure (Shrader-Frechette 2002; Bullard 2000; Taylor 2000; Whyte 2010). The moral wrongs characteristic (...) of environmental injustices often do not resonate with members of dominant societies. In some cases, those injustices are unknowable. To say that .. (shrink)

This article examines the consequences for the res publica of the simultaneous increase in state surveillance and the restriction of the right to take photographs in public ushered in by the War on Terror. We draw on Ariella Azoulay's theorization of what she terms the civil contract of photography, or the possibility for non-state civic interaction allowed by the invention of the camera. While Michel Foucault's studies of the role of constant surveillance in disciplinary societies help us to understand our (...) increasingly panoptical public spaces, Azoulay also draws on Giorgio Agamben's theorization of the state of exception, which enables us to better understand the restriction of established rights, including the right to take photographs, in the post-9/11 context. The article asks whether these developments signify an attempt to monopolize the decision as to who constitutes the citizenry of photography, and also considers artistic and political responses to surveillance and photography restrictions in Australia and the United Kingdom. (shrink)

Professionals in environmental fields engage with complex problems that involve stakeholders with different values, different forms of knowledge, and contentious decisions. There is increasing recognition of the need to train graduate students in interdisciplinary environmental science programs in these issues, which we refer to as “social ethics.” A literature review revealed topics and skills that should be included in such training, as well as potential challenges and barriers. From this review, we developed an online survey, which we administered to faculty (...) from 81 United States colleges and universities offering IESPs. Respondents overwhelmingly agreed that IESPs should address values in applying science to policy and management decisions. They also agreed that programs should engage students with issues related to norms of scientific practice. Agreement was slightly less strong that IESPs should train students in skills related to managing value conflicts among different stakeholders. The primary challenges to incorporating social ethics into the curriculum were related to the lack of materials and expertise for delivery, though challenges such as ethics being marginalized in relation to environmental science content were also prominent. Challenges related to students’ interest in ethics were considered less problematic. Respondents believed that social ethics are most effectively delivered when incorporated into existing courses, and they preferred case studies or problem-based learning for delivery. Student competence is generally not assessed, and respondents recognized a need for both curricular materials and assessment tools. (shrink)

Richard Thaler and Cass Sunstein’s Nudge advances a theory of how designers can improve decision-making in various situations where people have to make choices. We claim that the moral acceptability of nudges hinges in part on whether they can provide an account of the competence required to offer nudges, an account that would serve to warrant our general trust in choice architects. What needs to be considered, on a methodological level, is whether they have clarified the competence required for choice (...) architects to prompt subtly our behaviour toward making choices that are in our best interest from our own perspectives. We argue that, among other features, an account of the competence required to offer nudges would have to clarify why it is reasonable to expect that choice architects can understand the constraints imposed by semantic variance. Semantic variance refers to the diverse perceptions of meaning, tied to differences in identity and context, that influence how users interpret nudges. We conclude by suggesting that choice architects can grasp semantic variance if Thaler and Sunstein’s approach to design is compatible with insights about meaning expressed in science and technology studies and the philosophy of technology. (shrink)

Richard Thaler and Cass Sunstein’s Nudge advances a theory of how designers can improve decision-making in various situations where people have to make choices. We claim that the moral acceptability of nudges hinges in part on whether they can provide an account of the competence required to offer nudges, an account that would serve to warrant our general trust in choice architects. What needs to be considered, on a methodological level, is whether they have clarified the competence required for choice (...) architects to prompt subtly our behaviour toward making choices that are in our best interest from our own perspectives. We argue that, among other features, an account of the competence required to offer nudges would have to clarify why it is reasonable to expect that choice architects can understand the constraints imposed by semantic variance. Semantic variance refers to the diverse perceptions of meaning, tied to differences in identity and context, that influence how users interpret nudges. We conclude by suggesting that choice architects can grasp semantic variance if Thaler and Sunstein’s approach to design is compatible with insights about meaning expressed in science and technology studies and the philosophy of technology. (shrink)

A sketch of some of the implications of nudges.

Trust is a central concept in the philosophy of science. We highlight how trust is important in the wide variety of interactions between science and society. We claim that examining and clarifying the nature and role of trust (and distrust) in relations between science and society is one principal way in which the philosophy of science is socially relevant. We argue that philosophers of science should extend their efforts to develop normative conceptions of trust that can serve to facilitate trust (...) between scientific experts and ordinary citizens. The first project is the development of a rich normative theory of expertise and experience that can explain why the various epistemic insights of diverse actors should be trusted in certain contexts and how credibility deficits can be bridged. The second project is the development of concepts that explain why, in certain cases, ordinary citizens may distrust science, which should inform how philosophers of science conceive of the formulation of science policy when conditions of distrust prevail. The third project is the analysis of cases of successful relations of trust between scientists and non-scientists that leads to understanding better how ‘postnormal’ science interactions are possible using trust. (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)

The handling of cases under the Coal Health Compensation Schemes, set up in 1999 to compensate miners suffering from workplace medical conditions, resulted in over 100 solicitors from more than 30 firms facing disciplinary proceedings. Three were struck off, three suspended and over forty fined following the largest investigation ever mounted by the regulator. This article examines the political and regulatory context of the scandal, describes one of the cases presented to the Solicitors' Disciplinary Tribunal and examines the relevance of (...) theories of transgression to professional disciplinary matters. It concludes by considering the regulatory impacts and implications of the scandal. (shrink)

The American Journal of Bioethics, Volume 12, Issue 2, Page 11-12, February 2012.

In this paper, we examine Shaun Gallagher’s project of “naturalizing” phenomenology with the cognitive sciences: front-loaded phenomenology. While we think it is a productive proposal, we argue that Gallagher does not employ genetic phenomenological methods in his execution of FLP. We show that without such methods, FLP’s attempt to locate neurological correlates of conscious experience is not yet adequate. We demonstrate this by analyzing Gallagher’s critique of cognitive neuropsychologist Christopher Frith’s functional explanation of schizophrenic symptoms. In “constraining” Gallagher’s FLP program, (...) we discuss what genetic phenomenological method is and why FLP ought to embrace it. We also indicate what types of structures a genetically modified FLP will consider, and how such an approach would affect the manner in which potential neurological correlates of conscious experience are conceptually understood and experimentally investigated. (shrink)

It is likely that internal factors play an important role in restricting the possible avenues of evolutionary change from any starting point. Internal selective processes operating on premutational disturbances, on mutations, and on developmental phases may usefully be separated from the adaptive selection of phenotypes. The precise structural and morphological consequences of internal factors should soon become an isolable problem owing to a) the observational correlation of definite changes in hereditary specificity with particular developmental consequences; and b) the progressive theoretical (...) identification of the coordinative conditions in organisms. Increasing clarity regarding the coordinative conditions should throw light on the “mutational selection rules” and on the differentiative mutations which led to the most important steps in the past history of evolution.Die Wege der Evolution können sowohl durch innere Auslese der Genotypen wÄhrend der Entwicklung als auch durch die Äussere Darwinische Auslese der Phenotypen bestimmt werden. Seit 1949 haben sich zumindest fünf Forscher mit dieser Möglichkeit befasst. Es ist zur Zeit möglich, zwischen den beiden Arten von Zuchtwahl theoretisch und experimentell zu unterscheiden.Les chemins de l'évolution peuvent Être déterminés non seulement par la sélection extérieure Darwinienne des phénotypes mais aussi par la sélection intérieure des genotypes pendant le développement. Depuis 1949 aux moins cinq investigateurs en ont considéré la possibilité. Il est possible à présent de faire la distinction entre les deux types de sélection dans la théorie comme dans l'expérience. (shrink)

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)

Abstract As Paul B. Thompson suggests in his recent seminal paper, “‘There’s an App for That’: Technical Standards and Commodification by Technological Means,” technical standards restructure property (and other social) relations. He concludes with the claim that the development of technical standards of commodification can serve purposes with bad effects such as “the rise of the factory system and the deskilling of work” or progressive effects such as how “technical standards for animal welfare… discipline the unwanted consequences of market forces.” (...) In this reply, we want to append several points to his argument and suggest that he rightly points out that standards can promote various goods; however, there are peculiar powers wielded by standardization processes that might profitably be unpacked more systematically than Thompson's article seems to suggest. First, the concealment of the technopolitics around standards is largely due to their peculiar ontological status as recipes for reality. Second, technical standards can and do commit violence against persons, but such violence is often suffered not in the formation of class consciousness, as Marx might have put it, but as a failure to conform to the laws of nature . Content Type Journal Article Category Commentary Pages 1-6 DOI 10.1007/s13347-011-0048-1 Authors Lawrence Busch, Department of Sociology, Michigan State University, 429A Berkey Hall, East Lansing, MI 48824, USA Kyle Powys Whyte, Department of Philosophy, Michigan State University, 503 S. Kedzie Hall, East Lansing, MI 48824, USA Journal Philosophy & Technology Online ISSN 2210-5441 Print ISSN 2210-5433. (shrink)

Friedrich Hayek’s account of “spontaneous order” has generated increasing interest in recent decades. His argument for the superiority of the market in distributing knowledge without the need for central oversight has appealed to progressive democratic theorists, who are wary of the hubris of state planning and attracted to possibilities for self-organization, and to Foucaultians, who have long counseled political theory to cut off the King’s head. A spontaneous social order, organized by an invisible hand, would appear to dispense with arbitrary (...) power and foster creativity and individual liberty. This article challenges this view by highlighting the centrality of submission to Hayek’s account of spontaneous order. It shows that Hayek struggles to obscure the providentialism underpinning the account of social order he derives from Adam Ferguson and the Scottish Enlightenment. Nonetheless, his own account of spontaneous order relies on faith in the workings of the market, and submission to unintelligible market forces. (shrink)

ABSTRACTPolitical reconciliation between Indigenous peoples and settler nations is among the major ethical issues of the twenty-first century for millions of Indigenous peoples globally. Political reconciliation refers to the aspiration to transform violent and harmful relationships into respectful relationships. This essay discusses how efforts to achieve reconciliation are not feasible when settler nations and some of their citizens believe Indigenous peoples to be clamoring for undeserved privileges. Settler colonialism often includes the illusion that historic and contemporary settler populations have moral (...) grounds for their mistreatment of Indigenous peoples. This illusion masks historical and ongoing practices of settler colonialism that thwart effective practices of reconciliation. (shrink)

_Offers a striking new reading of Agamben’s political thought and its implications for political action in the present._.