Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. A global Task Force (...) was set up to develop model consent clauses specific to rare diseases research, that are comprehensive, harmonized, readily accessible, and internationally applicable, facilitating the recruitment and consent of rare disease research participants around the world. Existing consent forms and notices of consent were analyzed and classified under different consent themes, which were used as background to develop the model consent clauses. The IRDiRC-GA4GH MCC Task Force met in September 2018, to discuss and design model consent clauses. Based on analyzed consent forms, they listed generic core elements and designed the following rare disease research specific core elements; Rare Disease Research Introductory Clause, Familial Participation, Audio/Visual Imaging, Collecting, storing, sharing of rare disease data, Recontact for matching, Data Linkage, Return of Results to Family Members, Incapacity/Death, and Benefits. The model consent clauses presented in this article have been drafted to highlight consent elements that bear in mind the trends in rare disease research, while providing a tool to help foster harmonization and collaborative efforts. (shrink)

AimTo examine the relative cost-effectiveness of predictive genetic tests for familial breast and ovarian cancer provided by Genetic Services of Western Australia.MethodsThe relative cost-effectiveness was assessed using a decision analytic model.ResultsThe cost and outcomes of genetic testing was compared in first-degree relatives of known BRCA1/2 mutation-carriers who have a 50% risk of carrying the mutated gene (intervention group) to individuals with the same a priori risk but who do not undergo a genetic test (control subjects).Since genetic testing enables the restriction (...) of intensive surveillance to individuals with an identified BRCA1/2 gene mutation, net savings in the period observed (age 25-70) were $980-$1008 per woman in the ovarian intervention group and $1681-$1795 per woman in the breast intervention group, and delayed the onset of breast cancer (6mths BRCA1, 3mths BRCA2).Compared to control subjects undergoing population surveillance, it was estimated the onset of breast cancer could be delayed at a total net cost of $3055 (5.1yrs) to $3389 (3.2yrs) for women in the breast intervention group with BRCA1/2 mutations. Since population surveillance is not currently recommended for ovarian cancer, control subjects undergoing no surveillance were compared with the intervention group. The onset of ovarian cancer was delayed at a net cost of $1630 (3.5yrs) to $2509 (1.2years) for women with BRCA1/2 mutations.ConclusionsTesting allows targeted high-level surveillance for gene mutation carriers, which ensures the cost-effective use of resources and reduces cancer-related morbidity if clinical recommendations for intervention are adopted. (shrink)

Increasing emphasis on genetic research means that growing numbers of human research projects in Australia will involve complex issues related to genetic privacy, familial information and genetic epidemiology. The Office of Population Health Genomics (Department of Health, Western Australia) hosted an interactive workshop to explore the ethical issues involved in the disclosure of genetic information, where researchers and members of human research ethics committees (HRECs) were asked to consider several case studies from an ethical perspective. Workshop participants used a variety (...) of approaches to examine the complex ethical issues encountered, but did not consistently refer to the values and principles outlined in the National Statement on Ethical Conduct in Human Research (NHMRC 2007) or apply rational ethical approaches. Overall, the data suggested that both researchers and HREC members may benefit from further education and support regarding the application of ethical frameworks to the issues encountered in genetic research. (shrink)

Two widespread assumptions concerning networks, including guanxi networks, are that they function in terms of trust relations and that their structure is dyadic. This article subjects both assumptions to critical assessment and proposes alternative formulations. When the distinctions between trust and trustworthiness and between trust and assurance are made, then broader understandings of guanxi relationships emerge. The article shows that the assurance mechanism of guanxi is public exposure of transgressions against network norms, leading to the transgressor’s loss of face (mianzi). (...) The necessity of third-party intervention of this type, typically but not exclusively through gossip, indicates the triadic rather than dyadic structure of guanxi relationships when sanction of reputation is included in the conceptualization of guanxi. Changes in guanxi during economic transition in China, from strong-to weaker-tie associations, require careful consideration of the changing nature of the mechanisms of face-loss. (shrink)

This paper develops an argument against causal decision theory. I formulate a principle of preference, which I call the Guaranteed Principle. I argue that the preferences of rational agents satisfy the Guaranteed Principle, that the preferences of agents who embody causal decision theory do not, and hence that causal decision theory is false.

Philosophical arguments usually are and nearly always should be abductive. Across many areas, philosophers are starting to recognize that often the best we can do in theorizing some phenomena is put forward our best overall account of it, warts and all. This is especially true in esoteric areas like logic, aesthetics, mathematics, and morality where the data to be explained is often based in our stubborn intuitions. -/- While this methodological shift is welcome, it's not without problems. Abductive arguments involve (...) significant theoretical resources which themselves can be part of what's being disputed. This means that we will sometimes find otherwise good arguments which suggest their own grounds are problematic. In particular, sometimes revising our beliefs on the basis of such an argument can undermine the very justification we used in that argument. -/- This feature, which I'll call self-effacingness, occurs most dramatically in arguments against our standing views on the esoteric subject matters mentioned above: logic, mathematics, aesthetics, and morality. This is because these subject matters all play a role in how we reason abductively. This isn't an idle fact; we can resist some challenges to our standing beliefs about these subject matters exactly because the challenges are self-effacing. The self-effacing character of certain arguments is thus both a benefit and limitation of the abductive turn and deserves serious attention. I aim to give it the attention it deserves. (shrink)

This book provides a clear introduction to key philosophical and epistemological issues in the social sciences, to both positivist and interpretative methodologies through comparing contemporary debates surrounding social change.

Veridically perceiving puts us in a better epistemic position than, say, hallucinating does, at least in that veridical perception affords knowledge of our environment in a way that hallucination does not. But is there any _further_ epistemic advantage? Some authors have recently argued that veridical perception provides a superior epistemic benefit over hallucination not just concerning knowledge, but concerning justification as well. This contrasts with a traditional view according to which experience provides justification irrespective of whether it’s veridical or hallucinatory. (...) I think both views are mistaken. Although this traditional view should be rejected in favor of one on which _some_ hallucinations are epistemically worse than veridical perceptions (and some are not), I don’t believe there is good reason to think that the mere fact of hallucination—or factivity more generally—has any consequences for justification. Susanna Schellenberg has endorsed both the traditional and the factive views (for different elements or kinds of perceptual justification), and I critique her views in detail, though I also draw out more general epistemological lessons about factivity and evidence. (shrink)

Domestic violence and abuse (DVA) are at last coming to be recognised as serious global public health problems. Nevertheless, many women with personal histories of DVA decline to disclose them to healthcare practitioners. In the health sciences, recent empirical work has identified many factors that impede DVA disclosure, known as barriers to disclosure. Drawing on recent work in social epistemology on testimonial silencing, we might wonder why so many people withhold their testimony and whether there is some kind of epistemic (...) injustice afoot here. In this paper, I offer some philosophical reflections on DVA disclosure in clinical contexts and the associated barriers to disclosure. I argue that women with personal histories of DVA are vulnerable to a certain form of testimonial injustice in clinical contexts, namely, testimonial smothering, and that this may help to explain why they withhold that testimony. It is my contention that this can help explain the low rates of DVA disclosure by patients to healthcare practitioners. (shrink)

Outside of philosophy, ‘intuition’ means something like ‘knowing without knowing how you know’. Intuition in this broad sense is an important epistemological category. I distinguish intuition from perception and perception from perceptual experience, in order to discuss the distinctive psychological and epistemological status of evaluative property attributions. Although it is doubtful that we perceptually experience many evaluative properties and also somewhat unlikely that we perceive many evaluative properties, it is highly plausible that we intuit many instances of evaluative properties as (...) such. The resulting epistemological status of evaluative property attributions is very much like it would be if we literally perceived such properties. (shrink)

This paper develops a form of moral actualism that can explain the procreative asymmetry. Along the way, it defends and explains the attractive asymmetry: the claim that although an impermissible option can be self-conditionally permissible, a permissible option cannot be self-conditionally impermissible.

This book offers solutions to two persistent and I believe closely related problems in epistemology. The first problem is that of drawing a principled distinction between perception and inference: what is the difference between seeing that something is the case and merely believing it on the basis of what we do see? The second problem is that of specifying which beliefs are epistemologically basic (i.e., directly, or noninferentially, justified) and which are not. I argue that what makes a belief a (...) perceptual belief, or a basic belief, is not any introspectible feature of the belief but rather the nature of the cognitive system, or "module", that is causally responsible for the belief. Thus, even zombies, who in the philosophical literature lack conscious experiences altogether, can have basic, justified, perceptual beliefs. -/- The theories of perceptual and basic beliefs developed in the monograph are embedded in a larger reliabilist epistemology. I use this theory of basic beliefs to develop a detailed reliabilist theory: Inferentialist Reliabilism, which offers a reliabilist theory of inferential justification and which solves some longstanding problems for other reliabilist views by demanding inferential support for some—but not all—beliefs. The book is an instance of a thoroughgoingly naturalistic approach to epistemology. Many of my arguments have an empirical basis, and the view that I endorse reserves a central role for the cognitive sciences—in particular, cognitive neuroscience—in filling in the details of an applied epistemological theory. (shrink)

In this paper I return to Hubert Dreyfus’ old but influential critique of artificial intelligence, redirecting it towards contemporary predictive processing models of the mind (PP). I focus on Dreyfus’ arguments about the “frame problem” for artificial cognitive systems, and his contrasting account of embodied human skills and expertise. The frame problem presents as a prima facie problem for practical work in AI and robotics, but also for computational views of the mind in general, including for PP. Indeed, some of (...) the issues it presents seem more acute for PP, insofar as it seeks to unify all cognition and intelligence, and aims to do so without admitting any cognitive processes or mechanisms outside of the scope of the theory. I contend, however, that there is an unresolved problem for PP concerning whether it can both explain all cognition and intelligent behavior as minimizing prediction error with just the core formal elements of the PP toolbox, and also adequately comprehend (or explain away) some of the apparent cognitive differences between biological and prediction-based artificial intelligence, notably in regard to establishing relevance and flexible context-switching, precisely the features of interest to Dreyfus’ work on embodied indexicality, habits/skills, and abductive inference. I address several influential philosophical versions of PP, including the work of Jakob Hohwy and Andy Clark, as well as more enactive-oriented interpretations of active inference coming from a broadly Fristonian perspective. (shrink)

This paper is concerned with the senses in which paintings do and do not depict various temporal phenomena, such as motion, stasis and duration. I begin by explaining the popular – though not uncontroversial – assumption that depiction, as a pictorial form of representation, is a matter of an experiential resemblance between the pictorial representation and that which it is a depiction of. Given this assumption, I illustrate a tension between two plausible claims: that paintings do not depict motion in (...) the sense that video recordings do, and that paintings do not merely depict objects but may depict those objects as engaged in various activities, such as moving. To resolve the tension, I demonstrate that we need to recognise an ambiguity in talk of the appearance of motion, and distinguish between the depiction of motion and the depiction of an object as an object that is moving. Armed with this distinction, I argue that there is an important sense in which paintings depict neither motion, duration, nor – perhaps more controversially – stasis. (shrink)

This paper develops a view on which: (a) all fundamental facts are absolute, (b) some facts do not supervene on the fundamental facts, and (c) only relative facts fail to supervene on the fundamental facts.

I argue that the social dimension of alienation, as discussed by Williams and Railton, has been underappreciated. The lesson typically drawn from their exchange is that moral theory poses a threat to the internal integrity of the agent, but there is a parallel risk that moral theory will implicitly construe agents as constitutively alienated from one another. I argue that a satisfying account of agency will need to make room for what I call ‘genuine ethical contact’ with others, both as (...) concrete objects in the world external to ourselves and as subjects who can recognize us reciprocally. (shrink)

Introspective evidence is still treated with great suspicion in cognitive science. This work is designed to encourage cognitive scientists to take more account of the subject's unique perspective.

Consequentialists often assume rational monism: the thesis that options are always made rationally permissible by the maximization of the selfsame quantity. This essay argues that consequentialists should reject rational monism and instead accept rational pluralism: the thesis that, on different occasions, options are made rationally permissible by the maximization of different quantities. The essay then develops a systematic form of rational pluralism which, unlike its rivals, is capable of handling both the Newcomb problems that challenge evidential decision theory and the (...) unstable problems that challenge causal decision theory. (shrink)

Despite the widespread presence of public arts funding in liberal societies, some liberals find it unjustified. According to the Neutrality Objection, arts funding preferences some ways of life. One way to motivate this challenge is to say that a public goods-styled justification, although it could relieve arts funding of these worries of partiality, cannot be argued for coherently or is, in the end, too susceptible to impressions of partiality. I argue that diversity-based arts funding can overcome this challenge, because it (...) invests in non-excludable infrastructure that fosters cultural literacy. We all have some interest as citizens in living in a society which fosters cultural literacy, seeing as this helps others to understand us, supports us to understand ourselves, and helps alleviate confusion and alienation we feel toward social difference. While some of these benefits can be enjoyed by those who make and consume art, they are also gained by those who don’t, because arts funding affects the makeup of public spaces and the communicative practices we all use to make sense of the world. (shrink)

François Lamy, a Benedictine monk and Cartesian philosopher whose extensive relations with Arnauld, Bossuet, Fénélon, and Malebranche put him into contact with the intellectual elite of late-seventeenth-century France, authored the very first detailed and explicit refutation of Spinoza’s Ethics in French, Le nouvel athéisme renversé. Regrettably overlooked in the secondary literature on Spinoza, Lamy is an interesting figure in his own right, and his anti-Spinozist work sheds important light on Cartesian assumptions that inform the earliest phase of Spinoza’s critical reception (...) in the seventeenth-century. I begin by presenting Lamy’s life and the contentious state of Spinoza’s French reception in the 1680 and 1690s. I then discuss a central argument in Lamy’s refutation, namely the Cartesian objection that Spinoza’s account of the conceptual independence of attributes is incompatible with the theory of substance monism. Contrasting Lamy’s objection with questions put to Spinoza by de Vries and Tschirnhaus, I maintain that by exhibiting the direction Spinoza’s views on substance and attribute took in maturing we may accurately assess the strength of Spinoza’s position vis-à-vis his Cartesian objector, and I argue that, in fact, Spinoza’s mature account of God as an expressive ens realissimum is not vulnerable to Lamy’s criticism. In conclusion, I turn to Lamy’s objection that Spinoza’s philosophy is question-begging in view of Spinoza’s account of God, and I exhibit what this point of criticism tells us about the intentions of the first French Cartesian rebuttal of the Ethics. (shrink)

Emotion, Social Theory, and Social Structure takes sociology in a new direction. It examines key aspects of social structure by using a fresh understanding of emotions categories. Through that synthesis emerge new perspectives on rationality, class structure, social action, conformity, basic rights, and social change. As well as giving an innovative view of social processes, J. M. Barbalet's study also reveals unappreciated aspects of emotions by considering fear, resentment, vengefulness, shame, and confidence in the context of social structure. While much (...) has been written on the social consequences of excessive or pathological emotions, this book demonstrates the centrality of emotions to routine operations of social interaction. Dr Barbalet also re-evaluates the nature of social theory, for once the importance of emotions to social processes becomes clear, the intellectual constitution of sociology, and therefore its history, must be rethought. (shrink)

A theory of customary international law -- Case studies -- A theory of international agreements -- Human rights -- International trade -- A theory of international rhetoric -- International law and moral obligation -- Liberal democracy and cosmopolitan duty.

The history of the Frankfurt School cannot be fully told without examining the relationships of Critical Theorists to their Jewish family backgrounds. Jewish matters had significant effects on key figures in the Frankfurt School, including Max Horkheimer, Theodor W. Adorno, Erich Fromm, Leo Lowenthal and Herbert Marcuse. At some points, their Jewish family backgrounds clarify their life paths; at others, these backgrounds help to explain why the leaders of the School stressed the significance of antisemitism. In the post-Second World War (...) era, the differing relationships of Critical Theorists to their Jewish origins illuminate their distinctive stances toward Israel. This book investigates how the Jewish backgrounds of major Critical Theorists, and the ways in which they related to their origins, impacted upon their work, the history of the Frankfurt School, and differences that emerged among them over time. (shrink)

This paper proposes that we should think of epistemic agents as having, as one of their intellectual activities, a gatekeeping task: To decide in light of various criteria which ideas they should consider and which not to consider. When this task is performed with excellence, it is conducive to the acquisition of epistemic goods such as truth and knowledge, and the reduction of falsehoods. Accordingly, it is a worthy contender for being an intellectual virtue. Although gatekeeping may strike one simply (...) as the virtue of open- mindedness, I argue that it is not; gatekeeping does not favor a characteristic disposition to be willing to consider novel or opposing ideas. In fact, being told that an agent is excellent at gatekeeping reveals nothing about how frequently she considers or refuses to consider ideas. This paper will introduce and motivate the notion of gatekeeping, and offer some preliminary arguments in support of its candidacy as an intellectual virtue. (shrink)

Quantum computing is of high interest because it promises to perform at least some kinds of computations much faster than classical computers. Arute et al. 2019 (informally, “the Google Quantum Team”) report the results of experiments that purport to demonstrate “quantum supremacy” – the claim that the performance of some quantum computers is better than that of classical computers on some problems. Do these results close the debate over quantum supremacy? We argue that they do not. In the following, we (...) provide an overview of the Google Quantum Team’s experiments, then identify some open questions in the quest to demonstrate quantum supremacy. (shrink)

Cases of past absence involve agents noticing in retrospect that an object or property was absent, such as when one notices later that a colleague was not at a talk. In Sanskrit philosophy, such cases are introduced by Kumārila as counterexamples to the claim that knowledge of absence is perceptual, but further take on a life of their own as a topic of inquiry among Kumārila’s commentators and their Nyāya interlocutors. In this essay, I examine the Nyāya philosopher Gaṅgeśa’s epistemology (...) of past absence, according to which agents learn that a recollectable object or property was absent by inferring its past absence from failing to recall that object or property. Gaṅgeśa’s account is best appreciated against the backdrop of earlier theories and their shortcomings, and I begin by presenting historical views leading up to his. I identify two groups of views about the epistemology of past absence: recollection views, according to which cases of past absence involve agents recalling negative information; and recollection failure views, according to which cases of past absence involve agents failing to recall positive information. I reconstruct two early recollection views: a Bhāṭṭa view belonging to Uṃveka, and a competing Nyāya view belonging to Jayanta and Bhāsarvajña. I then examine Śālikanātha and Sucarita’s critiques of recollection views, following which I reconstruct a Bhāṭṭa recollection failure view belonging to Pārthasārathi. I then examine Gaṅgeśa’s critiques of Pārthasārathi’s account and the recollection failure view he constructs out of its shortcomings. (shrink)

93 Categories of Art -- 94 The Role of Theory in Aesthetics -- 95 Art and Natural Selection -- 96 Feminism in Context -- Contributors.

A study of selected popular literature on Spinoza for the Blackwell Companion to Spinoza.

Later Nyāya philosophers maintain that absences are real particulars, irreducible to any positives, that we perceive. The fourteenth-century Nyāya philosopher Gaṅgeśa argues for a condition on absence perception according to which we always perceive an absence as an absence of its counterpositive, or its corresponding absent object or property. Call this condition the ‘counterpositive condition’. Gaṅgeśa shows that the counterpositive condition is both supported by a plausible thesis about the epistemology of relational properties and motivates the defence of absence as (...) irreducible. But against Gaṅgeśa, the sixteenth-century Nyāya philosopher Raghunātha and his seventeenth-century commentators Bhavānanda, Jagadīśa, and Gadādhara identify cases in which the counterpositive condition fails. In this article, I examine the Nyāya-internal debate over this condition. I conclude that Raghunātha makes a compelling case that the counterpositive condition fails. (shrink)

Examines the ethics of euthanasia, and discusses capital punishment, organ donation, and the Hippocratic oath.

Jack Cohen and Ian Stewart explore the ability of complicated rules to generate simple behaviour in nature through 'the collapse of chaos'.