Over the past decade, there has been an extensive debate about whether researchers have an obligation to disclose genetic research findings, including primary and secondary findings. There appears to be an emerging (but disputed) view that researchers have some obligation to disclose some genetic findings to some research participants. The contours of this obligation, however, remain unclear. -/- As this paper will explore, much of this confusion is definitional or conceptual in nature. The extent of a researcher’s obligation to return (...) secondary and other research findings is often limited by reference to terms and concepts like “incidental,” “analytic validity,” “clinical validity,” “clinical relevance,” “clinical utility,” “clinical significance,” “actionability,” and “desirability.” These terms are used in different ways by different writers to describe obligations in different sorts of cases. -/- Underneath this definitional confusion is a general notion, supported by much of the literature, that findings only need to be disclosed when they surpass certain presumably objective or measureable thresholds, such as medical importance or scientific reproducibility. The problem is that there is significant variability in the way that these terms and concepts are used in the literature and, as such, in defining the scope of an obligation to return findings that surpasses the relevant thresholds. -/- The goal of this paper is to analyze the definitional muddle underlying the debate about returning genetic research findings, with the hope of answering a few questions. First, what is the range of definitions being used in this debate? Based on an extensive literature review, Part 1 will lay out a range of articulated definitions for each relevant term, with the goal of categorizing them into a handful of distinct types. Part 2 explains the definitional redundancy and confusion in the current literature, and, drawing from the terminological patterns identified in Part 1, outlines more cohesive building blocks to inform the development of future disclosure frameworks.Our minimum goal in articulating these conceptual building blocks is to promote clearer articulations of, and distinctions between, future disclosure frameworks. More ambitiously, we suggest which definitions and conceptualizations we consider most appropriate to use in future disclosure frameworks. Here, we seek to balance benefits to participants through the disclosure of important information with the minimization of undue burdens on individual researchers and the research enterprise more generally. -/- Our analysis builds upon the central philosophical distinction between concepts and conceptions. The basic idea is that the “concept” of X refers to the general (and relatively uncontroversial) structure/shape of X, while various “conceptions” of X are more particular, filled out, and controversial elaborations of the concept. In other words, “concepts” of X will be formal representations of X, while “conceptions” of X will be substantive interpretations of the key elements and relationships operating within that formal framework. (Implicit in this distinction is an important point about the nature of disagreement – namely, that in order for two or more parties to “disagree” about X as opposed to simply talk past one another, there must be at least enough shared agreement about X to know that the parties are referring to the same thing. A concept of X provides this point of common agreement, while competing conceptions of X mark the areas where disagreement arises.) In this paper, we will employ this distinction in a fundamental way to clarify exactly where the primary disagreements arise in the debate over disclosing genetic research findings. -/- We propose that, underlying all the seeming confusion and disagreement, there are three central and widely agreed upon concepts at work in this debate—validity, value, and volition. The first two concepts concern the nature of the information itself. An obligation to disclose only exists when findings are valid and have value but there are competing conceptions of how to determine or define validity and valuableness. The third concept—volition—pertains not to the information but rather to the person to whom it will be disclosed. Does that person want or not want the information, and what is the best way of determining this? Here, too, competing conceptions arise. Our key point, though, is that almost all of the ethical disagreement arises because of competing conceptions of these three concepts. Understanding and appreciating this key point can help to refocus the substantive debate by providing some common ground to start from in determining how best to interpret these shared concepts. This refocusing can, ideally, produce more productive debate and facilitate some progress in resolving it. (shrink)

Arguments do not occur against silent backdrops. From the drone of televisions to the music in a retail space to the symphony of combustion engines on the street, we are perpetually immersed in sound. We live in a noisy world. The combined sounds of these environments, or soundscapes, provide the very conditions of social interaction. Charles Hirschkind remarked that soundscapes are as necessary "to politics and public reason as are markets, associations, formal institutions, and information networks". These soundscapes are far (...) from neutral and can be designed to promote desired outcomes: soothing tones as you board an airplane to alleviate fear, a blaring voice over the loudspeaker to compel... (shrink)

Zusammenfassung Alte Menschen mit lebensbegleitender geistiger Behinderung weisen wiederkehrend auch gesundheitliche Problemstellungen auf, die eine stationäre akutklinische Behandlung erfordern. Gesundheitliche Belastungen sind bei dieser Personengruppe nicht ausschließlich auf die Behinderung, sondern auch auf eine höhere Vulnerabilität zurückzuführen, die sich durch degenerativ-altersassoziierte Problemstellungen weiter verstärkt. Gesundheitliche Belastungen treten bei dieser Gruppe mitunter auch als Folge lebenslanger gesundheitlicher Benachteiligung und Unterversorgung auf. Im Vergleich zu Menschen ohne Behinderung bekommen Menschen mit lebensbegleitender geistiger Behinderung vielfach weder die nach ihren höheren und spezifischen Bedarfen (...) _angemessenen _noch die _gleichen _Gesundheitsleistungen. Eine diskriminierende Ungleichbehandlung von Menschen mit (geistiger) Behinderung gegenüber Menschen ohne Behinderung drückt sich häufig auch in der Verletzung der Integrität und Würde dieser besonders vulnerablen Patient*innengruppe aus. Strukturelle sowie haltungs- und handlungsbezogene Diskriminierungspraktiken im Akutkrankenhaus können dazu beitragen, bestehende Vulnerabilitäten zu erhöhen und gesundheitliche Problemstellungen zu verschärfen. Ziel des Beitrages ist es, für diese Wechselwirkungen zu sensibilisieren und relevante Eckpunkte für eine würdevolle und integritätswahrende, am Gegenüber ausgerichtete Pflege im Akutkrankenhaus aufzuzeigen. (shrink)

Tandis que la science descriptive des normes les traite comme faits sociaux et les expose du dehors, la science dogmatique des normes cherche à élaborer les normes positives en un système cohérent de normes. Elle part de la réalité des normes dans la culture, mais elle est pensée à Vintérieur du système de normes. Il s’agit ici non d’un point de vue de simple connaissance, mais d’un point de vue normatif. La science philosophique des normes, ou Éthique, cherche à se (...) situer au-dessus des normes valides pour les expliquer et les ramener à des principes fondamentaux : les valeurs morales foncières ne peuvent être fondées dans une réalité. (shrink)

Briefeschreiben in der Antike -- Epikur und seine Briefe -- Paulus und seine Briefe -- Paulus und Epikur : ein Vergleich.

“Is logic a physical variable?” This thought-provoking question was put forward by Michael Heller during the public lecture “Category Theory and Mathematical Structures of the Universe” delivered on 30th March 2017 at the National Quantum Information Center in Sopot. It touches upon the intimate relationship between the foundations of physics, mathematics and philosophy. To address this question one needs a conceptual framework, which is on the one hand rigorous and, on the other hand capacious enough to grasp the diversity of (...) modern theoretical physics. Category theory is here a natural choice. It is not only an independent, well-developed and very advanced mathematical theory, but also a holistic, process-oriented way of thinking. (shrink)

Personal narratives in which medical students and clinicians reflect on their education and practice, or recipients of health care reflect on their journey though the system can provide valuable insights which can usefully be shared. In this paper, a medical student describes the effect of a humanities-based student-selected component on her understanding of anatomy and dissection, and a junior doctor in Iraq learns some painful lessons about medicine and society during a night shift in the casualty department.

Modern physics is founded on two mainstays: mathematical modelling and empirical verification. These two assumptions are prerequisite for the objectivity of scientific discourse. Here we show, however, that they are contradictory, leading to the ‘experiment paradox’. We reveal that any experiment performed on a physical system is—by necessity—invasive and thus establishes inevitable limits to the accuracy of any mathematical model. We track its manifestations in both classical and quantum physics and show how it is overcome ‘in practice’ via the concept (...) of environment. We argue that the unravelled paradox induces a new type of ‘ontic’ underdetermination, which has deep consequences for the methodological foundations of physics. (shrink)

How might argumentation scholars approach sound? Using the analytics afforded by strategic maneuvering, this essay identifies three unique features of sonic presentational devices: they are immersive, immediate and embodied. Although these features offer arguers presentational resource, they also pose new problems to the reasonable resolution of disagreement: immersion hazards overlap, immediacy risks rate of delivery beyond reflection, and materiality can coerce listeners. To theorize strategic use of sound, I reconstruct and analyze a popular Radiolab segment “The Unconscious Toscanini of the (...) Brain.” I find Radiolab uses three different sonic figures: synchronicity, or the translation of data into sound to foreground temporal relations; musical stings, an auditory invocation of embodied memory and the wave, a sonic strategy to arouse and narrow attention. I conclude that Radiolab’s use of sound is reasonable because it extends the critical discussion. (shrink)

This study delves into the creative protest tactics of Belarusian activists in 2011, highlighting their use of “sound bodies” created through clapping to challenge authoritarian constraints. The research posits that these ethereal sound bodies exert significant normative pressure on the regime by challenging the regime’s legitimacy. By analyzing the clapping protests as civil disobedience, this study illustrates the effectiveness of this non-visual form of protest in compelling the authoritarian regime to address the collective call for change. Through this lens, this (...) paper contributes a nuanced understanding of how decentralized protest strategies, particularly those leveraging sound, can serve as potent mechanisms for challenging oppressive governance in a digitally connected global landscape. This essay thus intervenes into the realms of argumentation theory and sound studies. (shrink)

Allowing persons to make an informed choice about their participation in research is a pre-eminent ethical and legal requirement. Almost universally, this requirement has been addressed through the provision of written patient information sheets and consent forms. Researchers and others have raised concerns about the extent to which such forms—particularly given their frequent lengthiness and complexity—provide participants with the tools and knowledge necessary for autonomous decision-making. Concerns are especially pronounced for certain participant groups, such as persons with low literacy and (...) Indigenous persons. Multimedia strategies have the potential to usefully supplement current consent practices in Australia; however, information is needed about the need for supplementary consent practices, along with drivers for and barriers against adoption. This study initiates the required evidence base through an audit of informed consent practices for medical research in the Australian state of Tasmania to assess the need for, and current uptake of, supplementary consent strategies. Drivers for and barriers against adoption of multimedia consent practices were explored in detail through interviews with key stakeholders, including researchers, HREC chairs and members, and research participants, including Indigenous participants. (shrink)

Homonyms, i.e. ambiguous words like ‘score’, have different meanings in different contexts. Previous research indicates that all potential meanings of a homonym are first accessed in parallel before one of the meanings is selected in a competitive race. If these processes are automatic, these processes of selection should even be observed when homonyms are shown subliminally. This study measured the time course of subliminal and supraliminal priming by homonyms with a frequent and a rare meaning in a neutral context, using (...) a lexical decision task. In the subliminal condition, priming across prime-target asynchronies ranging from 100 ms to 1.5 s indicated that the dominant meaning of homonyms was facilitated and the subordinate meaning was inhibited. This indicates that selection of meaning was much faster with subliminal presentation than with supraliminal presentation. Awareness of a prime might decelerate an otherwise rapid selection process. (shrink)

After World War II political science, especially comparative politics, was transformed by a "scientific revolution." Harry Eckstein, an influential spokesman in the revolution's forefront, went on to make a great variety of contributions in subsequent decades. These eleven essays, written over thirty years, cover the major issues in comparative politics, from civil war to "civic inclusion"—that is, "the tendency over time to include in politics, in workplace decision-making, in education, and in other institutional realms, people previously excluded from participation." (...) Eckstein also deals with political science as a field: how it relates to political practice, how it developed in the prewar period, and how it emerged from the first postwar reshaping. In this first collection of his work, Eckstein reflects on the issues and events—his personal experiences as a refugee from Nazi Germany and as an observer of European politics and cultures—that underlie and unify his thinking. _Regarding Politics_ presents in one powerful volume the career of one of the leading comparative political scientists of our times. (shrink)

In Australia, along with many other countries, limited guidance or other support strategies are currently available to researchers, institutional research ethics committees, and others responsible for making decisions about whether to return genomic findings with potential value to participants or their blood relatives. This lack of guidance results in onerous decision-making burdens—traversing technical, interpretative, and ethical dimensions—as well as uncertainty and inconsistencies for research participants. This article draws on a recent targeted consultation conducted by the Australian National Health and Medical (...) Research Council to put forward strategies for supporting return of finding decision-making. In particular, we propose a pyramid of decision-making support: decision-making guidelines, technical and interpretative assistance, and ethical assistance for intractable “tough” cases. Each step of the pyramid involves an increasing level of regulatory involvement and applies to a smaller subsection of genomic research findings. Implementation of such strategies would facilitate a growing evidence base for return of finding decisions, thereby easing the financial, time, and moral burdens currently placed on researchers and other relevant decision-makers while also improving the quality of such decisions and, consequently, participant outcomes. (shrink)

Hawe et al. raise concerns about Human Research Ethics Committees (HRECs) taking a risk-averse and litigation-sensitive approach to ethical review of research proposals. HRECs are tasked with reviewing proposals for compliance with the National Statement on Ethical Conduct in Human Research for the purpose of promoting the welfare of participants. While these guidelines intentionally include a significant degree of discretion in HREC decision making, there is also evidence that HRECs sometimes request changes that go beyond the guidance provided by the (...) National Statement. When HRECs request changes outside their remit, inconsistencies between individual HRECs become more common, contributing to delays in ethical review and reducing the quality of HREC decision making. Improvements to the HREC regulatory system are needed to promote transparency and accountability. (shrink)

The psychopathological phenomenon of delusions of influence comprises variable disturbances of the self-environment-border leading to the feeling of external influence on thoughts, feelings, impulses or behaviors. Delusions of influence are a hallmark in psychotic illness, but nevertheless, attenuated forms can also appear in healthy individuals. Here we present a newly developed paradigm to induce and assess feelings of external influence during instructed imaginations in healthy individuals. In the current study, we asked 60 healthy individuals to visually imagine different objects. To (...) induce feelings of external influence, we applied one of three different physical setups, and informed the participants whether or not an external influence was attempted during the respective trial. The physical setup as well as the information given to the participants alone were able to modulate the feeling of external influence in all three interventions. The impact of information significantly exceeded the impact of the physical setup on the ratings of experienced external influence. Moreover, the response latency correlated with the estimated feeling of external influence. Additional analyses addressed the influence of the emotional content of imagined objects and examined the intensity and emotional valence of the imaginations. Further supplemental analyses correlated external influence estimation of the participants with other psychopathological measures. In conclusion, this study endorses a quantitative model of psychopathological characteristics, in this case feelings of external influence that can be induced by external cues. (shrink)

Comparisons of indirect measures with direct measures can help elucidate the relationship between nonconscious and conscious perception. We report three experiments on masked word priming in which we observed a negative correlation between prime discriminability and priming , i.e. where priming decreased with increasing prime visibility. While such observations are rare , they may indicate a conflict between conscious and nonconscious processing when primes are shown close to the subjective visibility threshold for the priming-relevant information. For instance, such a conflict (...) could occur between nonconscious processing of a prime’s meaning and conscious perception of prime letters. Theoretical accounts that discuss similar conflicts assume that the conflict is resolved either by automatically prioritising conscious processes or by discounting the estimated confusion caused by a prime-target pair . In both cases, priming is predicted to decrease when prime visibility increases from below threshold to perithreshold levels. Therefore, we suggest that negative priming-d’ relationships are most likely observed when the d’ measure assesses prime visibility at a level of representation that is below the level of representation at which priming arises, in terms of a putative hierarchy of word processing. (shrink)

This essay notes the tendency to reduce sound to a cause of something else. Such a position constrains theory construction to only cause and effect schemes. I argue that we should expand our understanding of sound to include what I term sound figures, which acknowledge that sounds can represent the world. I conclude by offering an understanding of sound fig-ures tied to their resonance.

Professor Eckstein's book is a study of China's efforts to achieve rapid modernization of its economy within a socialist framework. Eckstein begins with an examination of economic development in pre-Communist China, specifically focusing on the resources and liabilities inherited by the new regime in 1949 and their effects on development policies. He then analyses the economic objectives of the Communist leadership - narrowing income disparities, maintaining full employment without inflation, and achieving rapid industrialization - and argues that the (...) implementation of these goals required a potent ideology capable of providing a strong faith and motivational force for the mass mobilization of resources. In discussing the methods used by the government to achieve its aims, Eckstein makes a thorough evaluation of China's general framework for economic planning, particularly in regard to the distribution and pricing of farm products and the allocation of resources in the industrial sector. The author also evaluates the radical institutional changes in property relations and in economic organization in the People's Republic of China. (shrink)

Non-instrumental acts and involvements are as basic to human nature as those which are instrumental; but our culture overlooks the former and thus diminishes human life. Hence, this book explores mainly the metaphysics of non-instrumental (intraested) involvements, and calls for their being better balanced and integrated with instrumental (interested) involvements. Various formulations of similar categories in philosophy and religion, particularly of love, are critically analyzed. Some aspects of Eckstein's life are examined for their effects on these ideas.

Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...) range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and tim.. (shrink)

The sixth edition of the Manual for Research Ethics Committees is a unique compilation of legal and ethical guidance which will prove invaluable for members of research ethics committees, researchers involved in research with humans, members of the pharmaceutical industry and students of law, medicine, ethics and philosophy. Presented in a clear and authoritative form, it incorporates the key legal and ethical guidelines and specially written chapters on major topics in bioethics by leading academic authors and practitioners, pharmaceutical industry associations (...) and professional bodies. In the sixth edition there are fifteen new chapters covering key issues from participation in clinical trials to cloning, and for the first time the manual has been produced in one easy-to-search hardback volume. (shrink)