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)

This chapter discusses Kuhn’s conception of the history of science by focussing on two respects in which Kuhn is an historicist historian and philosopher of science. I identify two distinct, but related, aspects of historicism in the work of Hegel and show how these are also found in Kuhn’s work. First, Kuhn held tradition to be important for understanding scientific change and that the tradition from which a scientific idea originates must be understood in evaluating that idea. This makes Kuhn (...) a historicist in a sense we may call conservative. Secondly, Kuhn held that there is a pattern to the development of science. In the light of the fact that he held scientific change to be law-like, we can call this second aspect of Kuhn’s historicism determinist. I discuss the relationship of Kuhn’s historicist historiography to the philosophical purposes he had for his history of science, namely to refute a conception of scientific progress as driven towards increasing truth by something like ‘the scientific method’. I argue that while this determinism refutes certain positivist conceptions of scientific change, it also requires internalism—the view that the causes of scientific change come from within science, not from outside. Consequently, Kuhn’s historiography of science contrasts with that implicit in much of post-Kuhnian science studies. (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)

Studies of epistemic communities and collaborative research in the social sciences have deepened the understanding of how science works, and more specifically how the social dimensions of scientific practice both enable and impede social scientists in realizing their epistemic goals. Two types of studies of epistemic communities are distinguished: general theories of epistemic communities aim to construct accounts of theoretical change applicable to all social scientific specialties, whereas historical studies emphasize the contingencies that affect specific social scientific disciplines, subfields, or (...) institutions. Although collaborative research plays a less pronounced role in the social sciences than in the natural sciences, collaboration has enabled social scientists to investigate topics that would otherwise be difficult to investigate. (shrink)

I examine two challenges that collaborative research raises for science. First, collaborative research threatens the motivation of scientists. As a result, I argue, collaborative research may have adverse effects on what sorts of things scientists can effectively investigate. Second, collaborative research makes it more difficult to hold scientists accountable. I argue that the authors of multi-authored articles are aptly described as plural subjects, corporate bodies that are more than the sum of the individuals involved. Though journal editors do not currently (...) conceive of the authors of multi-authored articles this way, this conception provides us with the conceptual resources to make sense of how collaborating scientists behave.Keywords: Collaborative research; Authorship; Multi-authored articles; Responsibility; Reward system; Plural subject. (shrink)

I argue that van Fraassen’s selectionist explanation for the success of science is superior to the realists’ explanation. Whereas realists argue that our current theories are successful because they accurately reflect the structure of the world, the selectionist claims that our current theories are successful because unsuccessful theories have been eliminated. I argue that, unlike the explanation proposed by the realist, the selectionist explanation can also account for the failures of once successful theories and the fact that sometimes two competing (...) theories are both equally successful. (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)

In recent years, the full text of papers are increasingly available electronically which opens up the possibility of quantitatively investigating citation contexts in more detail. In this study, we introduce a new form of citation analysis, which we call citation concept analysis (CCA). CCA is intended to reveal the cognitive impact certain concepts—published in a highly-cited landmark publication—have on the citing authors. It counts the number of times the concepts are mentioned (cited) in the citation context of citing publications. We (...) demonstrate the method using three classical highly cited books: (1) The structure of scientific revolutions by Thomas S. Kuhn, (2) The logic of scientific discovery—Logik der Forschung: Zur Erkenntnistheorie der modernen Naturwissenschaft in German—, and (3) Conjectures and refutations: the growth of scientific knowledge by Karl R. Popper. It is not surprising—as our results show—that Kuhn’s “paradigm” concept seems to have had a significant impact. What is surprising is that our results indicate a much larger impact of the concept “paradigm” than Kuhn’s other concepts, e.g., “scientific revolution”. The paradigm concept accounts for about 40% of the concept-related citations to Kuhn’s work, and its impact is resilient across all disciplines and over time. With respect to Popper, “falsification” is the most used concept derived from his books. Falsification is the cornerstone of Popper’s critical rationalism. (shrink)

The literature on collective belief and collective intentionality has grown rapidly and is now quite extensive. Philosophers have applied the concepts of “collective belief” and “collective intentionality” in a variety of contexts, including political and legal contexts as well as scientific contexts, specifically to model the behavior of research teams and scientific specialties.

The article examines Thomas Kuhn's work in the history of science with special attention to its relevance to subsequent developments in social epistemology. The article begins with a discussion of Kuhn's historical work, and the so-called historical turn in philosophy of science. It then examines Kuhn's views on textbook science, followed by an analysis of Kuhn's views on the relationship between the history of science and the philosophy of science. Then it discusses Kuhn's contributions to our understanding of the social (...) dimensions of scientific inquiry. Finally, it discusses his influence on the social epistemology of science and the sociology of science. (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)

We present a taxonomy of errors in the scientific literature and an account of how the errors are distributed over the categories. We have developed the taxonomy by studying substantial errors in the scientific literature as described in retraction notices published in the journal Science over the past 35 years. We then examine how the sorts of errors that lead to retracted papers can be prevented and detected, considering the perspective of collaborating scientists, journal editors and referees, and readers of (...) the published articles. (shrink)

The authorship policies of scientific journals often assume that in order to be able to properly place credit and responsibility for the content of a collaborative paper we should be able to distinguish the contributions of the various individuals involved. Hence, many journals have introduced a requirement for author contribution statements aimed at making it easier to place credit and responsibility on individual scientists. We argue that from a purely descriptive point of view the practices of collaborating scientists are at (...) odds with the requirement for author contribution statements. We also argue that from a normative point of view the authorship policies may be unnecessary. Our arguments draw on an examination of 35 years of retraction notices in the journal Science. (shrink)

There has been a growing concern over establishing norms that ensure the ethically acceptable and scientifically sound conduct of clinical trials. Among the leading norms internationally are the World Medical Association's Declaration of Helsinki, guidelines by the Council for International Organizations of Medical Sciences, the International Conference on Harmonization's standards for industry, and the CONSORT group's reporting norms, in addition to the influential U.S. Federal Common Rule, Food and Drug Administration's body of regulations, and information sheets by the Department of (...) Health and Human Services. There are also many norms published at more local levels by official agencies and professional groups.Any account of international standards should cover both scientific and ethical norms at once – the two are conceptually intertwined. Recent sources recognize that “[s]cientifically unsound research on human subjects is unethical in that it exposes research subjects to risks without possible benefit.”. (shrink)

I defend an alternative reading of §56 of Frege's Grundlagen, one that rescues Frege from Dummett's charge that this section is the weakest in the whole book. On my reading, Frege is not presenting arguments against the adjectival strategy. Rather, Frege presents the definitions in §55 in order to convince his reader that numbers must be objects. In §56 Frege suggests that these definitions contain two shortcomings that adequate definitions of numbers must overcome. And these short-comings, he argues, can only (...) be avoided if numbers are objects. Further, I have argued that my alternative reading defuses three of Dummett's four criticisms of §56, consequently challenging Dummett's claim that this section should be stigmatized as the weakest in the whole book. Nevertheless, I am inclined to agree with Dummett that the adjectival strategy is more robust than Frege suggests. Frege's arguments seem far from conclusive. Thus, it may be that the adjectival strategy can provide us with definitions that can do everything we can expect from adequate definitions of numbers. (shrink)

This article draws attention to the importance of enchantment in business ethics research. Starting from a Weberian understanding of disenchantment, as a force that arises through modernity and scientific rationality, we show how rationalist business ethics research has become disenchanted as a consequence of the normalization of positivist, quantitative methods of inquiry. Such methods absent the relational and lively nature of business ethics research and detract from the ethical meaning that can be generated through research encounters. To address this issue, (...) we draw on the work of political theorist and philosopher, Jane Bennett, using this to show how interpretive qualitative research creates possibilities for enchantment. We identify three opportunities for reenchanting business ethics research related to: moments of novelty or disruption; deep, meaningful attachments to things studied; and possibilities for embodied, affective encounters. In conclusion, we suggest that business ethics research needs to recognize and reorient scholarship towards an appreciation of the ethical value of interpretive, qualitative research as a source of potential enchantment. (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)

Background If trials of therapeutic interventions are to serve society's interests, they must be of high methodological quality and must satisfy moral commitments to human subjects. The authors set out to develop a clinical - trials compendium in which standards for the ethical treatment of human subjects are integrated with standards for research methods. Methods The authors rank-ordered the world's nations and chose the 31 with >700 active trials as of 24 July 2008. Governmental and other authoritative entities of the (...) 31 countries were searched, and 1004 English-language documents containing ethical and/or methodological standards for clinical trials were identified. The authors extracted standards from 144 of those: 50 designated as ‘core’, 39 addressing trials of invasive procedures and a 5% sample of the remainder. As the integrating framework for the standards we developed a coherent taxonomy encompassing all elements of a trial's stages. Findings Review of the 144 documents yielded nearly 15 000 discrete standards. After duplicates were removed, 5903 substantive standards remained, distributed in the taxonomy as follows: initiation, 1401 standards, 8 divisions; design, 1869 standards, 16 divisions; conduct, 1473 standards, 8 divisions; analysing and reporting results, 997 standards, four divisions; and post-trial standards, 168 standards, 5 divisions. Conclusions The overwhelming number of source documents and standards uncovered in this study was not anticipated beforehand and confirms the extraordinary complexity of the clinical trials enterprise. This taxonomy of multinational ethical and methodological standards may help trialists and overseers improve the quality of clinical trials, particularly given the globalisation of clinical research. (shrink)

This paper focuses on invasive therapeutic procedures, defined as procedures requiring the introduction of hands, instruments, or devices into the body via incisions or punctures of the skin or mucous membranes performed with the intent of changing the natural history of a human disease or condition for the better. Ethical and methodological concerns have been expressed about studies designed to evaluate the effects of invasive therapeutic procedures. Can such studies meet the same standards demanded of those, for example, evaluating pharmaceutical (...) agents? This paper describes a research project aimed at examining the interplay and sometimes apparent conflict between ethical standards for human research and standards for methodological rigor in trials of invasive procedures. The paper discusses how the authors plan to develop a set of consensus standards that, if met, would result in substantial and much-needed improvements in the methodological and ethical quality of such trials. (shrink)

The authorship policies of scientific journals often assume that in order to be able to properly place credit and responsibility for the content of a collaborative paper we should be able to distinguish the contributions of the various individuals involved. Hence, many journals have introduced a requirement for author contribution statements aimed at making it easier to place credit and responsibility on individual scientists. We argue that from a purely descriptive point of view the practices of collaborating scientists are at (...) odds with the requirement for author contribution statements. We also argue that from a normative point of view the authorship policies may be unnecessary. Our arguments draw on an examination of 35 years of retraction notices in the journal Science. (shrink)

This collection of essays by well-known scholars of Seneca focuses on the multifaceted ways in which Seneca, as philosopher, politician, poet and Roman senator, engaged with the question of ethical selfhood. The contributors explore the main cruces of Senecan scholarship, such as whether Seneca's treatment of the self is original in its historical context; whether Seneca's Stoicism can be reconciled with the pull of rhetorical and literary self-expression; and how Seneca claims to teach psychic self-integration. Most importantly, the contributors debate (...) to what degree, if at all, the absence of a technically articulated concept of selfhood should cause us to hesitate in seeking a distinctively Senecan self - one that stands out not only for the 'intensity of its relations to self', as Foucault famously put it, but also for the way in which those relations to self are couched. (shrink)

Kuhn's Structure of Scientific Revolutions has been enduringly influential in philosophy of science, challenging many common presuppositions about the nature of science and the growth of scientific knowledge. However, philosophers have misunderstood Kuhn's view, treating him as a relativist or social constructionist. In this book, Brad Wray argues that Kuhn provides a useful framework for developing an epistemology of science that takes account of the constructive role that social factors play in scientific inquiry. He examines the core concepts of (...) Structure and explains the main characteristics of both Kuhn's evolutionary epistemology and his social epistemology, relating Structure to Kuhn's developed view presented in his later writings. The discussion includes analyses of the Copernican revolution in astronomy and the plate tectonics revolution in geology. The book will be useful for scholars working in science studies, sociologists and historians of science as well as philosophers of science. (shrink)

Dignity underlies much philosophical debate, but the concept and its place in a broader theory of justice have received renewed analytic attention of late. In this article, I examine several recent books on dignity: Human Dignity and Political Criticism, by Colin Bird; Human Dignity and Human Rights, and Human Dignity and Social Justice, both by Pablo Gilabert; Contours of Dignity by Suzanne Killmister; and Humanity Without Dignity: Moral Equality, Respect, and Human Rights, by Andrea Sangiovanni. As I outline, each book (...) develops and defends a position in an established disagreement between so-called ‘Naturalistic’ views, which hold that dignity inheres in natural properties, and ‘Conventionalist’ perspectives, which hold that dignity is socially defined. With these contemporary accounts in mind, I expose the contours of this disagreement and suggest that further work should focus on developing a hybrid conception of dignity consistent with Naturalism and Conventionalism. (shrink)

“Ethics in practice” are the ethical dilemmas that arise during the conduct of research. In this article, we describe the ethical issues we faced when conducting an exploration of the experiences of 19 potential living kidney donors, and demonstrate how reflexivity can guide the ethical decision-making throughout the research process. We discuss how we addressed issues of risk of potential psychological discomfort and distress to participants; autonomy and consent; and power imbalance, disclosure and reciprocity. We also address the practical implications (...) of our decisions. Through this discussion of the “ethically important” moments we faced, we aim to spark debate about the ethical and practical challenges facing qualitative health researchers today, and demonstrate how reflexivity can contribute to navigating the “ethical labyrinth” of qualitative health research. (shrink)

Essays address the issues involved with man's treatment of animals, from the use of animals in scientific research to the moral question of keeping wild animals in captivity.

Margaret Gilbert explores the phenomenon referredto in everyday ascriptions ofbeliefs to groups. She refers to this type ofphenomenon as ``collective belief'' andcalls the types of groups that are the bearersof such beliefs ``plural subjects''. Iargue that the attitudes that groups adoptthat Gilbert refers to as ``collectivebeliefs'' are not a species of belief in animportant and central sense, but rathera species of acceptance. Unlike proper beliefs,a collective belief is adopted bya group as a means to realizing the group'sgoals. Unless we recognize (...) that thisphenomenon is a species of acceptance, pluralsubjects will seem prone to changetheir ``beliefs'' for irrelevant reasons, andthus frequently appear to act in anirrational manner. (shrink)

In this book K. Brad Wray provides a comprehensive survey of the arguments against scientific realism. In addition to presenting logical considerations that undermine the realists' inferences to the likely truth or approximate truth of our theories, he provides a thorough assessment of the evidence from the history of science. He also examines grounds for a defence of anti-realism, including an anti-realist explanation for the success of our current theories, an account of why false theories can be empirically successful, (...) and an explanation for why we should expect radical changes of theory in the future. His arguments are supported and illustrated by cases from the history of science, including a sustained study of the Copernican Revolution, and a study of the revolution in early twentieth century chemistry, when chemists came to classify elements by their atomic number rather than by their atomic weight. (shrink)

I examine the epistemic import of collaborative research in science. I develop and defend a functional explanation for its growing importance. Collaborative research is becoming more popular in the natural sciences, and to a lesser degree in the social sciences, because contemporary research in these fields frequently requires access to abundant resources, for which there is great competition. Scientists involved in collaborative research have been very successful in accessing these resources, which has in turn enabled them to realize the epistemic (...) goals of science more effectively than other scientists, thus creating a research environment in which collaboration is now the norm. (shrink)

I examine whether or not it is apt to attribute knowledge to groups of scientists. I argue that though research teams can be aptly described as having knowledge, communities of scientists identified with research fields, and the scientific community as a whole are not capable of knowing. Scientists involved in research teams are dependent on each other, and are organized in a manner to advance a goal. Such teams also adopt views that may not be identical to the views of (...) the individual members of the group. (shrink)

The pessimistic induction plays an important role in the contemporary realism/anti-realism debate in philosophy of science. But there is some disagreement about the structure and aim of the argument. And a number of scholars have noted that there is more than one type of PI in the philosophical literature. I review four different versions of the PI. I aim to show that PIs have been appealed to by philosophers of science for a variety of reasons. Even some realists have appealed (...) to a PI. My goal is to advance our understanding of what the various PIs can teach us about science and the threat posed by PIs to scientific realism. (shrink)

Van Fraassen believes our current best theories enable us to make accurate predictions because they have been subjected to a selection process similar to natural selection. His explanation for the predictive success of our best theories has been subjected to extensive criticism from realists. I aim to clarify the nature of van Fraassen’s selectionist explanation for the success of science. Contrary to what the critics claim, the selectionist can explain why it is that we have successful theories, as well as (...) why it is reasonable to expect past successful theories to be successful in the future. I also argue that the plausibility of the realists’ explanation rests on an inaccurate understanding of the nature of predictive success . The predictive success of our best theories is a relative success. (shrink)