In this paper I show that Aristotle’s widely criticised exclusion of Platonic efficient causes at Metaph. A 6.988a7–17 is defensible as an interpretation of Plato, and that alternative accounts are unpersuasive. I argue that Aristotle is only interested in – what he supposes to be – Plato’s first principles and that the usual candidates that are brought forward in scholarship as possible first principles and efficient causes (e.g. from the Timaeus and the Philebus) all fall short in crucial respects according (...) to Aristotle. This reading has the dual benefit of illuminating Aristotle’s strategy in book A and of letting him appear as a more trustworthy doxographer of his predecessors’ views. (shrink)

In this paper I show that Aristotle’s widely criticised exclusion of Platonic efficient causes at Metaph. A 6.988a7–17 is defensible as an interpretation of Plato, and that alternative accounts are unpersuasive. I argue that Aristotle is only interested in – what he supposes to be – Plato’s first principles and that the usual candidates that are brought forward in scholarship as possible first principles and efficient causes (e.g. from the Timaeus and the Philebus) all fall short in crucial respects according (...) to Aristotle. This reading has the dual benefit of illuminating Aristotle’s strategy in book A and of letting him appear as a more trustworthy doxographer of his predecessors’ views. (shrink)

In this paper I focus on Proclus’ concept of the instrumental cause in his commentary on the Timaeus (In Tim.). Unlike earlier Neoplatonists who do not make much use of this type of causality, Proclus relates the instrumental cause to the hypostasis of nature (φύσις). The Demiurge uses nature as an instrument in his ordering and creation of the cosmos. How does Proclus arrive at this understanding of nature? I argue that the definition of nature as an instrumental cause is (...) in part based on his critical reception of Aristotle who identifies nature with the formal, efficient, and/or final cause. That is, Proclus did not develop his views on the causality of nature only by looking at the Timaeus (and other Platonic sources), but also by engaging with Aristotle’s rich – and, to a certain extent, authoritative – reflections on this issue. (shrink)

In this paper, I argue that Plato conceives self-motion as non-spatial in Laws X. I demonstrate this by focusing on the textual evidence and by refuting interpretations according to which self-motion either is a specific type of spatial motion or is said to require space as a necessary condition for its occurrence. Moreover, I show that this non-spatial understanding differs from the identification of the soul’s motion with locomotion in the Timaeus. Consequently, I provide an explanation for this difference between (...) the Timaeus and Laws X by considering developmentalist and contextualist viewpoints. (shrink)

In this paper I argue that Proclus’ criticism of the causality of Aristotle’s intellect is part of a general attack on Aristotle’s metaphysics. I show how Proclus criticises Aristotle for rejecting the One as a metaphysical principle and the metaphysical confusion that arises from this. Additionally, I claim that for Proclus Aristotle’s understanding of efficient causality differs from Plato’s and I discuss two of his arguments that Aristotle should have accepted the intellect as an efficient cause. As I show throughout, (...) Proclus differs in his approach to Aristotle from the harmonising agenda of Ammonius and Simplicius. (shrink)

The article focuses on how media and religion relate, investigating the specific professional practices of media reporting on religion. Journalism is objective, while religion is subjective – however, scholars agree that today it is difficult to imagine religion isolated from the relation with media. Therefore, the media coverage of religion, that includes identifying the proper approaches to objectively frame subjective topics, becomes a challenge. The paper provides a theoretical background on the main characteristics of the media industry and the models (...) of journalism, good professional practices in reporting on religion, along with a brief overview at the situation of religious media content in worldwide media institutions and in Romania. Finally, a study on professional practices in local media was conducted, investigating how both mainstream and religious (niche) media journalists cover religious topics. Questions addressed by this paper refer to the principles of good reporting on religion, to the specific interaction between the Church and the media since more and more indicate media as source of knowledge for religion, and, finally, to the way media and religion are handling together the continuous challenges imposed by the fast technological progress in worldwide media communication. (shrink)

The aim of this conceptual paper is to discuss the issue of managing fake news in the online environment, from an organizational perspective, by using reactive PR strategies. First, we critically discuss the most important definitions of the umbrella term fake news, in the so-called post-truth era, in order to emphasize different challenges in conceptualizing this elusive social phenomenon. Second, employing some valuable contribution from literature, we present and illustrate with vivid examples 10 categories of fake news. Each type of (...) fake news is discussed in the context of organizational communication. Based on existent literature, we propose a 3D conceptual model of fake news, in an organizational context. Furthermore, we consider that PR managers can use either reactive PR strategies to counteract online fake news regarding an organization, or communication stratagems to temporarily transform the organization served into a potential source of fake news. The existing typology of reactive public relations strategies from the literature allow us to discuss the challenge of using them in counteracting online fake news. Each reactive PR strategy can be a potential solution to respond to different types of online fake news. Although these possibilities seem to be extensive, in some cases, PR managers can find them ineffective. In our view, this cluster of reactive PR strategies is not a panacea for managing fake news in the online environment and different strategic approaches may be need, such as communication stratagems. In this context, communication stratagems consist in using organization as a source or as a vector for strategic creation and dissemination of online fake news, for the benefit of the organization. We conclude that within online environment PR managers can employ a variety of reactive PR strategies to counteract fake news, or different communication stratagems to achieve organizational goals. (shrink)

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a (...) given disease can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges. (shrink)

Rare diseases pose a particular priority setting problem. The UK gives rare diseases special priority in healthcare priority setting. Effectively, the National Health Service is willing to pay much more to gain a quality-adjusted life-year related to a very rare disease than one related to a more common condition. But should rare diseases receive priority in the allocation of scarce healthcare resources? This article develops and evaluates four arguments in favour of such a priority. These pertain (...) to public values, luck egalitarian distributive justice the epistemic difficulties of obtaining knowledge about rare diseases and the incentives created by a higher willingness to pay. The first is at odds with our knowledge regarding popular opinion. The three other arguments may provide a reason to fund rare diseases generously. However, they are either overinclusive because they would also justify funding for many non-rare diseases or underinclusive in the sense of justifying priority for only some rare diseases. The arguments thus fail to provide a justification that tracks rareness as such. There are no data in this work. (shrink)

Since its inception in 1869, the periodic system — icon of modern chemistry — has suffered from the problematic accommodation of the rare-earth elements. The substance of this paper intends to retrace Mendeleev’s shifting attitudes with regard to the rare-earth crisis during the period 1869–1871. Based on a detailed examination of Mendeleev's research papers from that period, it will be argued that the rare-earth crisis played a key role in inducing a number of important changes in Mendeleev’s (...) philosophical viewpoints with regard to the epistemological concept of a chemical element and the nature of elementary groups. Many of Mendeleev's most cherished beliefs got endangered by the nature of these elements. Their mystifying properties forced him to revise his ideas about primary and secondary groups, the elements as basic and simple substances, and the use of short and long form tables. They made him question the validity and universality of the periodic law, and led him into hypothesizing about the internal structure of matter and constitution of atoms. (shrink)

Source [1] Andrew E. P. Mitchell, Federica Galli, Sondra Butterworth. (2023). Editorial: Equality, diversity and inclusive research for diverse rare disease communities. Front. Psychol., vol. 14. doi:10.3389/fpsyg.2023.1285774. "It is also important to recognize that certain mental health disorders are classified as rare conditions and have their own cultural concepts of distress, as defined in the DSM-5 (American Psychiatric Association, 2013)" and require “equal attention and support for individuals and their families, both physically and emotionally”. [1].

Orphan drug policy often gives ‘special treatment’ to rare diseases, by giving additional priority or making exceptions to specific drugs, based on the rarity of the conditions they aim to treat. This essay argues that the goal of orphan drug policy should be to make prevalence irrelevant to funding decisions. It aims to demonstrate that it is severity, not prevalence, which drives our judgments that important claims are being overlooked when treatments for severe rare diseases are not funded. (...) It shows that prioritising severity avoids problems caused by prioritising rarity, and that it is compatible with a range of normative frameworks. The implications of a severity-based view for drug development are then derived. The severity-based view also accounts for what is wrong with how the current system of drug development unfairly neglects common diseases that burden the developing world. Lastly, the implications of a severity-based view for current orphan drug policies are discussed. There are no data in this work. (shrink)

Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the burden of living with chronic medical conditions. The moral significance of rare disease experiences is often overlooked in qualitative studies conducted with adults living with rare diseases. The concept of morally problematic situations arising from pragmatist ethics shows promise in understanding these experiences. The objectives of this study were to (1) acquire an (...) in-depth understanding of morally problematic situations experienced by adults living with rare diseases in the province of Québec and (2) to develop an integrative model of the concept of morally problematic situations. To this end, an online survey targeting this population was developed through a participatory action research project. Respondents provided 90 long testimonies on the most important morally problematic situations they faced, often in healthcare settings. An integrative model was developed based on various qualitative analyses of these testimonies and relevant literature. The integrative model showcases that morally problematic situations have causes (i.e., contextual and relational factors, personal factors, jeopardized valuations), have affective repercussions (i.e., emotions and feelings, internal tensions), prompt action (i.e., through empowerment strategies leading to the evolution of situations), and elicit outcomes (i.e., factual consequences, residual emotions and feelings, positive or negative resolutions). In sum, this study advances understanding of the moral experiences of adults living with rare diseases while proposing a comprehensive conceptual tool to guide future empirical bioethics research on moral experiences. (shrink)

We, in the rare disease community are grateful to Halley et al. (2023) for highlighting some of the long-overlooked barriers to care. As the parent of a non-ambulatory, teenage boy living with Duch...

Presenting the cultural and neuronal forces that power our distinctively human modes of awareness, the author proposes that the human mind is a hybrid product of interweaving a super-complex form of matter (the brain) with an invisible symbolic web (culture) to form a cognitive network. Reprint. 11,500 first printing.

It is important to note that certain mental health disorders are classified as rare conditions, and they have their own ‘cultural concepts of distress’ as defined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM 5). Cultural concepts of distress are a recent attempt to understand psychological distress influenced by culture, separate from biomedical diagnoses that require equal attention and support for individuals and their families, both physically and emotionally. [1].

Rare events have happened ever since the beginning of this universe. However, they have very recently become the subject of study and a category. This paper studies what rare events are and explores a series of epistemological consequences, thereafter, along with its complexity. The paper introduces a brand new understanding about the sciences of complexity, namely the study of unpredictable phenomena. Unpredictability is the ground, the problem, and the support for complexity as such, something that has never been (...) openly set to the fore in the bibliography about the field. Los eventos raros han sucedido desde el comienzo de este universo y, sin embargo, la tematización y categorización de los mismos es un fenómeno perfectamente reciente. Este artículo estudia qué son los eventos raros y explora la tesis y consecuencia de tipo epistemológico y su complejidad. El texto permite por lo demás una nueva comprensión sobre las ciencias de la complejidad, a saber, el estudio de fenómenos impredecibles. La impredecibilidad constituye el piso, el problema y el soporte de la complejidad misma, algo que jamás ha sido puesto explícitamente de manifiesto en la bibliografía sobre el tema. (shrink)

In the article Should rare diseases get special treatment? by Monica Q F de Magalhaes,1 it is argued that rarity is not a morally relevant feature to consider in prioritising treatment in healthcare, but severity is. A central conclusion in the article is that severity rather than prevalence should guide different cost-effectiveness thresholds. Hence, I take it, she answers no to the question in her own heading. I agree with all of this—and with most of her other arguments and (...) conclusions in the article—except for the clause ‘rather than prevalence’. For this reason, I find the article misses its’ mark. Let me explain by taking Sweden as an example. Sweden has a legally established ethics framework for priority setting in healthcare since 1997, comprising three principles: human-dignity principle, needs-solidarity principle and cost-effectiveness principle. The implication of these principles in practice is that the higher the severity—the higher the cost-effectiveness threshold acceptable.2 During the last 10 years or so, the highest accepted cost-effectiveness threshold for the most severe conditions have been in the order of €100 000/QALY. Until a few years ago rarity or prevalence was …. (shrink)

Many works of science fiction, for example those of David Brin, Larry Niven, and Poul Anderson, assume that our galaxy is populated by many intelligent alien species that we will eventually contact for cooperation, competition, or perhaps combat. Isaac Asimov, on the other hand, assumed in his Foundation Series that humanity would spread out into the empty galaxy and colonize it without encountering other intelligent species.

When health budgets are insufficient to provide care for all, allocating resources to treat a person with a rare and expensive disorder entails that we cannot treat at least one person with a more common, less expensive disorder. Since any allocation scheme will entail such trade‐offs, how should prudent policy‐makers, concerned about justice and fairness, allocate their community's health resources? In their article in this issue of the Hastings Center Report, Emily Largent and Steven Pearson frame this problem as (...) a conflict between the “rule of rescue” and utilitarian allocation schemes that try to maximize the benefits produced by a given budget. In his article, Norman Daniels discusses the related problem of the “identified victim bias.” I doubt that the problem of crafting an equitable health policy regarding orphan diseases maps onto either of these factors in a way that sheds light on the key moral issues. (shrink)

This chapter gives an overview of the evolution of the position of the rare-earth elements in the periodic system, from Mendeleev’s time to the present. Three fundamentally different accommodation methodologies have been proposed over the years. Mendeleev considered the rare-earth elements as homologues of the other elements. Other chemists looked upon the rare earths as forming a special intraperiodic group and therefore clustered the rare-earth elements in one of the groups of the periodic table. Still others (...) adhered to the intergroup accommodation of the rare earths, according to which the rare-earth elements do not show any relationship with the other elements, so that they had to be placed within the periodic table as a separate family of elements. The intergroup accommodation became the preferred one in the twentieth century. The advantages and disadvantages of the different representations of the modern periodic table are discussed. (shrink)

Gaucher disease is a rare, chronic,ethnic-specific genetic disorder affecting Jewsof Eastern European descent. It is extremelyexpensive to treat and presents difficultdilemmas for officials and patients in Israelwhere many patients live. First, high-cost,high-benefit, but low volume treatment forGaucher creates severe allocation dilemmas forpolicy makers. Allocation policies driven bycost effectiveness, age, opportunity or needmake it difficult to justify funding. Processoriented decision making based on terms of faircooperation or decisions invoking the ``rule ofrescue'''' risk discriminating against minoritieswho may already suffer from inequitabledistribution (...) of heath care resources. Apartfrom cost, Gaucher disease prompts questionsabout abortion. Unlike severe geneticdisorders, Gaucher offers no grounds forabortion and, in many ways, is analogous togender based abortions that are prohibitedregardless of fetal age. Finally, Gaucherraises concerns about the disclosure of geneticinformation. These affect potential carriersasked to participate in population studies andcarriers and patients who must considerdisclosure to others. These concerns weigh theright to privacy against communal interests andbilateral commitments. (shrink)

This study explores how Machiavelli's unique understanding of founders and the nature of their enterprise reflects his judgments about what constitutes the highest human excellence. Both virtue and founding are examined before Machiavelli's treatments of the "most excellent" founders of Prince 6 are considered in detail. Ultimately, comprehending the excellence peculiar to these founders facilitates an understanding of the standard by which Machiavelli evaluates humans; this standard is a key element in unlocking Machiavelli's thoughts.

Systematic sampling of communities gives rise to large contingency tables summing up possible changes in the assemblages' structure. Such tables are generally analysed by multivariate statistical methods, which are ill-suited for simultaneously analysing rare and common species (Field et al., 1982). In order to separately process species belonging to either of these categories, we propose a statistical method to select common species in a sequence of ecological surveys. It is based on a precise definition of rarity, and depends on (...) a rarity parameter. In this work, this parameter will be optimised so that the sub-table of common species captures the essential features of the complete table as well as possible. In this way we analysed the spatio-temporal evolution of macrobenthic communities from the Algiers harbour to study the pollution influence during a year. The examination of the communities' structuring was done through Principal Components Analysis (PCA) of the species proportions table. Environmental variables were simultaneously sampled. We show that the data structure can be explained by about 25% of the total number of present species. Two environmental gradients were brought to the fore inside the harbour, the first one representing pollution, and the second one representing hydrological instabilities. (shrink)

Main clause phenomena (MCPs) are syntactic constructions that occur predominantly or exclusively in main clauses. I propose a processing explanation for MCPs. Sentence processing is easiest at the beginning of the sentence (requiring less search); this follows naturally from widely held assumptions about sentence processing. Because of this, a wider variety of constructions can be allowed at the beginning of the sentence without overwhelming the sentence‐processing mechanism. Unlike pragmatic and grammatical accounts of MCPs, the processing account predicts avoidance of MCPs (...) in non‐initial main clauses (non‐initial coordinate clauses and premodified clauses). A corpus study supports these predictions, but it is somewhat inconclusive. A further corpus study examines another type of syntactic construction, premodifying adjunct phrases (“openers”); the prediction here is that less common types of opener will be especially avoided in non‐initial contexts. The prediction is confirmed, supporting the processing view of rare constructions. (shrink)

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)

Rgyal ba rdo rje 'chaṅ yab yam gyi rnam thar rin chen gter mdzod -- Saṅs rgyas thams cad kyi rnam 'phrul Rje-btsan Ti-lo-pa'i rnam mgur -- Bde gśegs phag mo gru pa'i rnam thar -- Bram zc chen pos mdzad pa'i ṅoh ha bskor gsum blo gsal mgal brgyan -- Bka' yoṅ dag pa'i tshad ma źes bya ba mkha'i 'gro ma'i man ṅag -- Bya btaṅ stag rtse sku skye'i rtogs brjod med snaṅ chu zla'i zlos gar -- (...) 'Gu-ru rin-po-che'i rnam thar bstod pa dbyid kyi sgra dbyaṅs. (shrink)

Kenneth Kipnis (2006) presents a normative defense of strict confidentiality, but it follows from an empirical claim that allowing breach would result in all parties being worse off, including, par...

In their meta-analysis Wood, Kressel, Joshi, and Louie argue little evidence supports shifts in mating preferences across the menstrual cycle. They imply this may represent a critical weakness of evolutionary psychology theories of mating preferences more generally. This report represents a fairly common use of meta-analysis: to assemble data to support or reject a particular proposition over which there is debate. Yet, rarely do meta-analyses succeed at resolving ideological debates. Multiple decision points related to the selection, coding, effect size extraction, (...) and interpretation of studies leaves considerable room for meta-analytic authors to interject their own beliefs. Meta-analyses are typically hailed by those who agreed a priori with their conclusion, and rejected as fatally flawed by those in disagreement. As such, meta-analyses have failed in replacing narrative reviews as more objective. (shrink)

If culture is defined as variation acquired and maintained by social learning, then culture is common in nature. However, cumulative cultural evolution resulting in behaviors that no individual could invent on their own is limited to humans, song birds, and perhaps chimpanzees. Circumstantial evidence suggests that cumulative cultural evolution requires the capacity for observational learning. Here, we analyze two models the evolution of psychological capacities that allow cumulative cultural evolution. Both models suggest that the conditions which allow the evolution of (...) such capacities when rare are much more stringent than the conditions which allow the maintenance of the capacities when common. This result follows from the fact that the assumed benefit of the capacities, cumulative cultural adaptation, cannot occur when the capacities are rare. These results suggest why such capacities may be rare in nature. (shrink)

Since Mendeleev’s discovery in 1869, the periodic table has figured as the ultimate paper tool in chemical research. It has proved to be a vital research instrument in the arsenal of the chemical community. No chemistry textbook, lecture theatre or scientific laboratory is complete without a copy of the periodic table of the elements. -/- This however, should not necessarily imply that the periodic table has never had to contend with problems. In this thesis, the history of the accommodation of (...) the rare-earth elements in the periodic table will be addressed. When Mendeleev published his periodic table in 1869, the rare earths already constituted a major obstacle. Mendeleev was able to include only four members of the rare earths and he experienced great difficulties in positioning these elements. Question marks and wrong atomic weights reigned in the last rows of Mendeleev’s system. -/- This problematic accommodation quickly grew into one of the most serious threats for the periodic law. For over fifty years, chemists continually struggled with the placement of these maddeningly similar elements. As a consequence, a lot of chemists started to question the validity of the periodic law, but others took it as a sign that the concept of a chemical element had to be reconsidered. As a result, this work intends to retrace the mutual influence of the philosophical ideas about the nature of chemical elements and the development of the periodic table from its inception in 1869 to the discovery of Moseley’s law in 1913 and Bohr’s publication of his landmark paper On the Constitution of Atoms and Molecules. -/- The aim of this thesis is to show how, on the one hand, the periodic table (as a research instrument) helped in reformulating the contemporary ideas about chemical elements, and how it aided in developing a new research program in order to resolve the rare earth crisis. On the other hand, the question will be taken up to what extent Crookes’ evolutionary ideas about meta elements helped in saving the periodic table from a severe downfall by solving the gnawing problem of the rare-earth elements. In particular, this work will also focus on the investigations of the Czech chemist, Bohuslav Brauner. It will be shown how Brauner, under the influence of Crookes’ ideas, was led to his formulation of the Asteroid Hypothesis, according to which all the rare-earth elements should be placed in a single case of the periodic table. (shrink)

Most rare diseases are poorly understood, affected individuals struggle tobe timely diagnosed and to access tailored, appropriate, and affordablecare. Following pragmatist theory, individuals living with rare diseasesmay experience these obstacles as morally problematic situations, wherethey struggle with actualizing their cherished values amid their lifecircumstances. These embedded and contextualized lived episodes aredistinct from moral challenges and moral issues, which are more abstract,decontextualized, and speculative moral matters. We sought to uncoverthe moral matters of adults living with rare diseases in (...) the qualitativeliterature while elucidating the moral dimensions of morally problematicsituations. Moral matters were extracted from 25 qualitative studies andsubjected to thematic and interpretive analyses. The uncovered moralissues addressed abstract considerations relating to accessibility, limitedknowledge, and unpredictability of illness manifestations. Moralchallenges and morally problematic situations spanned across the fourphases of the medical trajectory: the diagnostic odyssey, the diagnosis,clinical care and treatment, and medical follow-up. Moral challengesnamely pertained to poor communication of diagnoses, lack of shareddecision-making, and lack of holistic support. Morally problematicsituations featured moral dimensions, namely (1) internal tensions (e.g.,being misunderstood), (2) constraints to agency (e.g., powerlessness anddisempowerment), in addition to (3) empowerment and selfadvocacystrategies (e.g., being assertive and demanding), notably in episodeswhere support from clinicians lacked. This study highlights the usefulnessof distinguishing these three types of moral matters in ethical analysis. Italso shows how moral dimensions of morally problematic situations carryexistential importance for affected individuals. (shrink)

Individuals living with rare conditions are faced with important challenges derived from the rarity of their conditions and aggravated by the low priority given to rare disease research. However, current realities of rare disease research require consideration of the relationship between subjectivity and ‘traditional’ objectivity. Objectivity in research has traditionally been associated with processes and descriptions that are independent of the investigator. The need for researchers to provide unbiased knowledge and achieve a balance between objectivity and the (...) underlying values in nursing and scientific research requires an examination of how objectivity is conceptualized within the context of rare disease research. The aim of this paper is to examine scientific objectivity in rare disease research from a philosophical viewpoint and, in doing so, demonstrate the need to redefine it to reflect the current scientific environment. As such, healthcare providers working on this field need to redefine objectivity around ethical and moral obligation to advance science in an equitable manner with the end goal to produce knowledge that is trustworthy and beneficial to our patients. (shrink)

This paper argues that it is not incoherent to think that abortion should be “legal but rare.” The argument draws upon virtue ethics, feminism, critical theory, and the theory of biopolitics to argue that the idea that abortion should be legal but rare is best understood as aiming at the elimination of unwanted pregnancies. Some pro-choice defenders of abortion rights worry that the “legal but rare” idea stigmatizes women who choose abortion. But when this idea is unpacked (...) using the tools of intersectional analysis, biopolitical theory, and virtue ethics it can be understood as pointing toward a transformation of social reality that empowers women. (shrink)

There are distinctive methodological and conceptual challenges in rare and severe event (RSE) forecast verification, that is, in the assessment of the quality of forecasts of rare but severe natural hazards such as avalanches, landslides or tornadoes. While some of these challenges have been discussed since the inception of the discipline in the 1880s, there is no consensus about how to assess RSE forecasts. This article offers a comprehensive and critical overview of the many different measures used to (...) capture the quality of categorical, binary RSE forecasts – forecasts of occurrence and non-occurrence – and argues that of skill scores in the literature there is only one adequate for RSE forecasting. We do so by first focusing on the relationship between accuracy and skill and showing why skill is more important than accuracy in the case of RSE forecast verification. We then motivate three adequacy constraints for a measure of skill in RSE forecasting. We argue that of skill scores in the literature only the Peirce skill score meets all three constraints. We then outline how our theoretical investigation has important practical implications for avalanche forecasting, basing our discussion on a study in avalanche forecast verification using the nearest-neighbour method (Heierli et al., 2004). Lastly, we raise what we call the “scope challenge”; this affects all forms of RSE forecasting and highlights how and why working with the right measure of skill is important not only for local binary RSE forecasts but also for the assessment of different diagnostic tests widely used in avalanche risk management and related operations, including the design of methods to assess the quality of regional multi-categorical avalanche forecasts. (shrink)

Recently, the possibility of misrepresentation has resurfaced in the debate between higher-order thought theorists and their opponents. One new element in the debate has been the rare cases of Charles Bonnet syndrome , proposed as empirical evidence for misrepresentation as posited by the higher-order theories. In this article I will spell out the argument supposedly underlying the claim that the RCB cases are genuine empirical evidence of misrepresentation. I will then proceed to show that this argument relies on a (...) hidden premise. With this premise exposed the argument cannot support the notion of misrepresentation posited by higher-order theories. (shrink)