Care after research is for participants after they have finished the study. Often it is NHS-provided healthcare for the medical condition that the study addresses. Sometimes it includes the study intervention, whether funded and supplied by the study sponsor, NHS or other party. The NHS has the primary responsibility for care after research. However, researchers are responsible at least for explaining and justifying what will happen to participants once they have finished. RECs are responsible for (...) considering the arrangements. There are ethical and practical issues, in particular when participants may wish to continue on the study intervention after the study. There are also various guidelines and legislation. This document presents a framework of questions to help NHS RECs and their applicants. Information on this document’s development is here. (shrink)

The general aim of this article is to give a critical interpretation of post-trial obligations towards individual research participants in the Declaration of Helsinki 2013. Transitioning research participants to the appropriate health care when a research study ends is a global problem. The publication of a new version of the Declaration of Helsinki is a great opportunity to discuss it. In my view, the Declaration of Helsinki 2013 identifies at least two clearly different types of post-trial obligations, (...) specifically, access to care after research and access to information after research. The agents entitled to receive post-trial access are the individual participants in research studies. The Declaration identifies the sponsors, researchers and host country governments as the main agents responsible for complying with the post-trial obligations mentioned above. To justify this interpretation of post-trial obligations, I first introduce a classification of post-trial obligations and illustrate its application with examples from post-trial ethics literature. I then make a brief reconstruction of the formulations of post-trial obligations of the Declaration of Helsinki from 2000 to 2008 to correlate the changes with some of the most salient ethical arguments. Finally I advance a critical interpretation of the latest formulation of post-trial obligations. I defend the view that paragraph 34 of ‘Post-trial provisions’ is an improved formulation by comparison with earlier versions, especially for identifying responsible agents and abandoning ambiguous ‘fair benefit’ language. However, I criticize the disappearance of ‘access to other appropriate care’ present in the Declaration since 2004 and the narrow scope given to obligations of access to information after research. (shrink)

In Information and Computer Ethics (ICE), and, in fact, in normative and evaluative research of Information Technology (IT) in general, researchers have paid few attentions to the prudential values of IT. Hence, analyses of the prudential values of IT are mostly found in popular discourse. Yet, the analyses of the prudential values of IT are important for answering normative questions about people’s well-being. In this chapter, the author urges researchers in ICE to take the analyses of the (...) prudential values of IT seriously. A serious study of the analyses, he argues, will enrich the research of ICE. But, what are the analyses? The author will distinguish the analyses of the prudential values of IT, i.e. the prudential analysis, from other types of normative and evaluative analysis of IT. Then, the author will explain why prudential analyses are not taken seriously by the researchers in ICE, and argue why they deserve more attentions. After that, he will outline a framework to analyse and evaluate prudential analyses, and he will apply the framework to an actual prudential analysis. Finally, he will briefly conclude this chapter by highlighting the limits of the proposed framework and identifying the directions for future research. (shrink)

The quantum information introduced by quantum mechanics is equivalent to a certain generalization of classical information: from finite to infinite series or collections. The quantity of information is the quantity of choices measured in the units of elementary choice. The “qubit”, can be interpreted as that generalization of “bit”, which is a choice among a continuum of alternatives. The axiom of choice is necessary for quantum information. The coherent state is transformed into a well-ordered series of (...) results in time after measurement. The quantity of quantum information is the transfinite ordinal number corresponding to the infinity series in question. The transfinite ordinal numbers can be defined as ambiguously corresponding “transfinite natural numbers” generalizing the natural numbers of Peano arithmetic to “Hilbert arithmetic” allowing for the unification of the foundations of mathematics and quantum mechanics. (shrink)

When information on a coma patient’s expected outcome is uncertain, a moral dilemma arises in clinical practice: if life-sustaining treatment is continued, the patient may survive with unacceptably poor neurological prospects, but if withdrawn a patient who could have recovered may die. Continuous electroencephalogram-monitoring is expected to substantially improve neuroprognostication for patients in coma after cardiac arrest. This raises expectations that decisions whether or not to withdraw will become easier. This paper investigates that expectation, exploring cEEG’s impacts when (...) it becomes part of a socio-technical network in an Intensive Care Unit. Based on observations in two ICUs in the Netherlands and one in the USA that had cEEG implemented for research, we interviewed 25 family members, healthcare professionals, and surviving patients. The analysis focuses on the way patient outcomes are constructed, the kind of decision support these outcomes provide, and how cEEG affects communication between professionals and relatives. We argue that cEEG can take away or decrease the intensity of the dilemma in some cases, while increasing uncertainty for others. It also raises new concerns. Since its actual impacts furthermore hinge on how cEEG is designed and implemented, we end with recommendations for ensuring responsible development and implementation. (shrink)

This fifth volume on Advances and Applications of DSmT for Information Fusion collects theoretical and applied contributions of researchers working in different fields of applications and in mathematics, and is available in open-access. The collected contributions of this volume have either been published or presented after disseminating the fourth volume in 2015 in international conferences, seminars, workshops and journals, or they are new. The contributions of each part of this volume are chronologically ordered. First Part of this book (...) presents some theoretical advances on DSmT, dealing mainly with modified Proportional Conflict Redistribution Rules (PCR) of combination with degree of intersection, coarsening techniques, interval calculus for PCR thanks to set inversion via interval analysis (SIVIA), rough set classifiers, canonical decomposition of dichotomous belief functions, fast PCR fusion, fast inter-criteria analysis with PCR, and improved PCR5 and PCR6 rules preserving the (quasi-)neutrality of (quasi-)vacuous belief assignment in the fusion of sources of evidence with their Matlab codes. Because more applications of DSmT have emerged in the past years since the apparition of the fourth book of DSmT in 2015, the second part of this volume is about selected applications of DSmT mainly in building change detection, object recognition, quality of data association in tracking, perception in robotics, risk assessment for torrent protection and multi-criteria decision-making, multi-modal image fusion, coarsening techniques, recommender system, levee characterization and assessment, human heading perception, trust assessment, robotics, biometrics, failure detection, GPS systems, inter-criteria analysis, group decision, human activity recognition, storm prediction, data association for autonomous vehicles, identification of maritime vessels, fusion of support vector machines (SVM), Silx-Furtif RUST code library for information fusion including PCR rules, and network for ship classification. Finally, the third part presents interesting contributions related to belief functions in general published or presented along the years since 2015. These contributions are related with decision-making under uncertainty, belief approximations, probability transformations, new distances between belief functions, non-classical multi-criteria decision-making problems with belief functions, generalization of Bayes theorem, image processing, data association, entropy and cross-entropy measures, fuzzy evidence numbers, negator of belief mass, human activity recognition, information fusion for breast cancer therapy, imbalanced data classification, and hybrid techniques mixing deep learning with belief functions as well. (shrink)

There is no consensus yet on the definition of semantic information. This paper contributes to the current debate by criticising and revising the Standard Definition of semantic Information (SDI) as meaningful data, in favour of the Dretske‐Grice approach: meaningful and well‐formed data constitute semantic information only if they also qualify as contingently truthful. After a brief introduction, SDI is criticised for providing necessary but insufficient conditions for the definition of semantic information. SDI is incorrect because (...) truth‐values do not supervene on semantic information, and misinformation (that is, false semantic information) is not a type of semantic information, but pseudo‐information, that is not semantic information at all. This is shown by arguing that none of the reasons for interpreting misinformation as a type of semantic information is convincing, whilst there are compelling reasons to treat it as pseudo‐information. As a consequence, SDI is revised to include a necessary truth‐condition. The last section summarises the main results of the paper and indicates some interesting areas of application of the revised definition. (shrink)

Integrated Information Theory (IIT) is currently one of the most influential scientific theories of consciousness. Here, we focus specifically on a metaphysical aspect of the theory’s most recent version (IIT 4.0), what we may call its idealistic ontology, and its tension with a kind of realism about the external world that IIT also endorses. IIT 4.0 openly rejects the mainstream view that consciousness is generated by the brain, positing instead that consciousness is ontologically primary while the physical domain is (...) just “operational”. However, this philosophical position is presently underdeveloped and is not rigorously formulated in IIT, potentially leading to many misinterpretations and undermining its overall explanatory power. In the present paper we aim to address this issue. We argue that IIT’s idealistic ontology should be understood as a specific combination of phenomenal primitivism, reductionism regarding Φ-structures and complexes, and eliminativism about non-conscious physical entities. Having clarified this, we then focus on the problematic tension between IIT’s idealistic ontology and its simultaneous endorsement of realism, according to which there is some kind of external reality independent of our minds. After refuting three potential solutions to this theoretical tension, we propose the most plausible alternative: understanding IIT’s realism as an assertion of the existence of other experiences beyond one’s own, what we call a non-solipsistic idealist realism. We end with concluding remarks and future research avenues. (shrink)

Study represents an application of the neutrosophic method, for solving the contradiction between communication and information. In addition, it recourse to an appropriate method of approaching the contradictions: Extensics, as the method and the science of solving the contradictions. The research core is the reality that the scientific research of communication-information relationship has reached a dead end. The bivalent relationship communicationinformation, information-communication has come to be contradictory, and the two concepts to block each other. (...) class='Hi'>After the critical examination of conflicting positions expressed by many experts in the field, the extensic and inclusive hypothesis is issued that information is a form of communication. The object of communication is the sending of a message. The message may consist of thoughts, ideas, opinions, feelings, beliefs, facts, information, intelligence or other significational elements. When the message content is primarily informational, communication will become information or intelligence. The arguments of supporting the hypothesis are: a) linguistic (the most important being that there is "communication of information" but not "information of communication"; also, it is clarified and reinforced the over situated referent, that of the communication as a process), b) systemic-procedural (in the communication system is developing an information system; the informing actant is a type of communicator, the information process is a communication process), c) practical (the delimitation eliminates the efforts of disparate and inconsistent understanding of the two concepts), d) epistemological arguments (the possibility of intersubjective thinking of reality is created), linguistic arguments, e) logical and realistic arguments (it is noted the situation that allows to think coherently in a system of concepts - derivative series or integrative groups) f) and arguments from historical experience (the concept of communication has temporal priority, it appears 13 times in Julius Caesar’s writings ). In an axiomatic conclusion, the main arguments are summarized in four axioms: three are based on the pertinent observations of specialists, and the fourth is a relevant application of Florentin Smarandache’s neutrosophic theory. (shrink)

The quantum information introduced by quantum mechanics is equivalent to that generalization of the classical information from finite to infinite series or collections. The quantity of information is the quantity of choices measured in the units of elementary choice. The qubit can be interpreted as that generalization of bit, which is a choice among a continuum of alternatives. The axiom of choice is necessary for quantum information. The coherent state is transformed into a well-ordered series of (...) results in time after measurement. The quantity of quantum information is the ordinal corresponding to the infinity series in question. Number and being (by the meditation of time), the natural and artificial turn out to be not more than different hypostases of a single common essence. This implies some kind of neo-Pythagorean ontology making related mathematics, physics, and technics immediately, by an explicit mathematical structure. (shrink)

This study aims to look at the role of the practice of excellence strategies in education in achieving sustainable competitive advantage for the Higher educational institutions of the faculty of Engineering and Information Technology at Al-Azhar University in Gaza, a model, and the study considered the competitive advantage of educational institutions stems from the impact on the level of each student, employee, and the institution. The study was based on the premise that the development of strategies for excellence in (...) education, and its implementation is a vital important prerequisite to achieve sustainable competitive advantage in higher educational institutions. The study followed a systematic exploratory descriptive methodology through review of the theoretical literature, and the adoption of the experience of the Faculty of Engineering and Information Technology at Al-Azhar University in Gaza as a model for its unique experience in the field of excellence in education. The study results showed that the most important are: There is a strong correlation between the level of exercising excellence strategies in education and the achievement of higher educational institutions to the sustainable competitive advantage. The results include a general required number of important sub results on the subject of the model - Faculty of Engineering and Information Technology at Al-Azhar University in Gaza as follows: - The student considered the academic focus of the operation in the development process of the workers’ skills, particularly academics at the university helps to distinguish students and increase the employment rate after graduation. - The existence of consistency in development efforts and quality improvement for all three levels (student, employee, and the university), and this contributes to the Faculty excellence. - The Faculty has been able to achieve competitive advantages by offering excellent services without harming the efficiency, and this alone is a great success because improving service properties requires great investments, which negatively affect the continued institutional development. The study also reached a set of recommendations as follows: - The need to exercise excellence strategies in education, excellence reward at the national level, and those higher educational institutions follow the criteria for measuring the competitive advantages of its institutions always. - There is a need to increase efforts to implement programs of excellence, the allocation of adequate time, reward outstanding efforts as well. There is a necessity for each faculty to achieve competitive advantage and sustainability, using the general philosophies of competitive advantage, but with a different strategically content from what is in the private commercial sector, it reflects the Faculties mission and objectives, depending on making improvements and excellence in processes that ensure the safety of its outputs. As well as the need to find a balance between the work of teaching and research work of the faculty members, this has important implications regarding the criteria used in the process of excellence evaluation. The study recommended the adoption of strategies for excellence in education on a national public policy level mainly in the processes of change in higher education institutions. The need to support the existence of a common understanding of the efforts of excellence to create a general culture that appreciates excellence in faculties and universities. This underlines the need for transparent, fair rewards systems, to encourage innovation in education. The need to conduct a comprehensive surveys on the graduates of faculties and universities including the areas of employment and skills, because that will give accurate indications of the graduates and will help to establish a link to a more precise about the relationship of excellence strategies with the competitive advantages. (shrink)

In this paper we provide a philosophical analysis of the Hard Problem of consciousness and the implications of conceivability scenarios for current neuroscientific research. In particular, we focus on one of the most prominent neuroscientific theories of consciousness, integrated information theory (IIT). After a brief introduction on IIT, we present Chalmers’ original formulation and propose our own layered view of the hard problem, showing how 2 separate issues can be distinguished. More specifically, we argue that it’s possible (...) to disentangle a core problem of consciousness from a layered hard problem, the latter being essentially connected to Chalmers’ conceivability argument. We then assess the relation between the Hard Problem and IIT, showing how the theory resists conceivability scenarios, and how it is equipped to face up to the hard problem in its broadest acceptation. (shrink)

The paper discusses the origin of dark matter and dark energy from the concepts of time and the totality in the final analysis. Though both seem to be rather philosophical, nonetheless they are postulated axiomatically and interpreted physically, and the corresponding philosophical transcendentalism serves heuristically. The exposition of the article means to outline the “forest for the trees”, however, in an absolutely rigorous mathematical way, which to be explicated in detail in a future paper. The “two deductions” are two successive (...) stage of a single conclusion mentioned above. The concept of “transcendental invariance” meaning ontologically and physically interpreting the mathematical equivalence of the axiom of choice and the well-ordering “theorem” is utilized again. Then, time arrow is a corollary from that transcendental invariance, and in turn, it implies quantum information conservation as the Noether correlate of the linear “increase of time” after time arrow. Quantum information conservation implies a few fundamental corollaries such as the “conservation of energy conservation” in quantum mechanics from reasons quite different from those in classical mechanics and physics as well as the “absence of hidden variables” (versus Einstein’s conjecture) in it. However, the paper is concentrated only into the inference of another corollary from quantum information conservation, namely, dark matter and dark energy being due to entanglement, and thus and in the final analysis, to the conservation of quantum information, however observed experimentally only on the “cognitive screen” of “Mach’s principle” in Einstein’s general relativity. therefore excluding any other source of gravitational field than mass and gravity. Then, if quantum information by itself would generate a certain nonzero gravitational field, it will be depicted on the same screen as certain masses and energies distributed in space-time, and most presumably, observable as those dark energy and dark matter predominating in the universe as about 96% of its energy and matter quite unexpectedly for physics and the scientific worldview nowadays. Besides on the cognitive screen of general relativity, entanglement is available necessarily on still one “cognitive screen” (namely, that of quantum mechanics), being furthermore “flat”. Most probably, that projection is confinement, a mysterious and ad hoc added interaction along with the fundamental tree ones of the Standard model being even inconsistent to them conceptually, as far as it need differ the local space from the global space being definable only as a relation between them (similar to entanglement). So, entanglement is able to link the gravity of general relativity to the confinement of the Standard model as its projections of the “cognitive screens” of those two fundamental physical theories. (shrink)

Buildings are the largest energy consumer worldwide, according to the United Nations Environment Programme (UNEP). Most of the building’s energy consumption is in the building’s life cycle stage. Therefore, achieving sustainable development at the national level requires minimizing the building’s effects on the environment via reducing energy consumption by buildings. The building’s energy performance will be predicted and evaluated by the energy simulation. Using BIM in EPAs significantly reduces time and costs. This study aimed to optimize energy consumption in buildings (...) using Building Information Modeling (BIM) Technology, which can assess energy performance in the building. In this research, the general form of the building was modeled on the Autodesk Revit Software. The main shape of the building was chosen for modeling after reviewing the proposed designs. Then, the building energy consumption was calculated using the relevant tools in this scope, according to the materials, equipment, and project location. Finally, the best possible mode was selected by examining different modes of energy consumption. The results showed that 61.48% difference between the best mode of energy consumption optimization and the current mode of the building and 79.35% compared to the initial mode. Finally, parametric studies of alternative cost optimization schemes showed that saving 58.23% of the building’s current status for a 30-year horizon. (shrink)

From 1900 onwards, scientists and novelists have explored the contours of a future society based on the use of “anthropotechnologies” (techniques applicable to human beings for the purpose of performance enhancement ranging from training and education to genome-based biotechnologies). Gradually but steadily, the technologies involved migrated from (science) fiction into scholarly publications, and from “utopia” (or “dystopia”) into science. Building on seminal ideas borrowed from Nietzsche, Peter Sloterdijk has outlined the challenges inherent in this development. Since time immemorial, and at (...) least since the days of Plato’s Academy, human beings have been interested in possibilities for (physical or mental) performance enhancement. We are constantly trying to improve ourselves, both collectively and individually, for better or for worse. At present, however, new genomics-based technologies are opening up new avenues for self-amelioration. Developments in research facilities using animal models may to a certain extent be seen as expeditions into our own future. Are we able to address the bioethical and biopolitical issues awaiting us? After analyzing and assessing Sloterdijk’s views, attention will shift to a concrete domain of application, namely sport genomics. For various reasons, top athletes are likely to play the role of genomics pioneers by using personalized genomics information to adjust diet, life-style, training schedules and doping intake to the strengths and weaknesses of their personalized genome information. Thus, sport genomics may be regarded as a test bed where the contours of genomics-based self-management are tried out. (shrink)

Along with “epoché” or his “reductions”, Husserl’s “noema” and “noesis”, being neologisms invented by him, are main concepts in phenomenology able to represent its originality. Following the trace of a recent paper (Penchev 2021 July 23), its formal and philosophical approach is extended to both correlative notions, in the present article. They are able to reveal the genesis of the world from consciousness in a transcendental method relevant to Husserl, but furthermore described formally as a process of how subjective temporality (...) appears being isomorphic to objective temporality of the “world by itself” (an abstraction meaning it out of consciousness or transcendental consciousness): thus, it shares the same mathematical structure, which is embodied in the physical process of decoherence by the physical quantity of quantum information. The temporal world is able to appear naturally (rather as a ridiculous effect of the mythical “Big Bang”). The same process translated by formal and mathematical tools as interpreted in terms of “noema”, “noesis”, or transcendental consciousness is isomorphic to how “Self” (including in an individual and psychological sense) appears in virtue of transcendental consciousness. (shrink)

El problema de la transición de los participantes desde una investigación hacia la atención de la salud apropiada es un problema global. La publicación de una nueva versión de la Declaración de Helsinki es una excelente oportunidad para repensar este problema. Según mi interpretación, la Declaración de Helsinki 2013 introduce dos tipos diferentes de obligaciones posinvestigación, a saber, (1) obligaciones de acceso a atención de la salud y (2) obligaciones de acceso a información. Los beneficiarios pretendidos de estas obligaciones son (...) los participantes individuales de estudios de investigación. Y la Declaración identifica a los patrocinadores, investigadores y gobiernos de los países anfitriones como los principales agentes responsables de cumplir con las obligaciones posinvestigación. Para justificar esta interpretación de los tipos, agentes y beneficiarios de las obligaciones posinvestigación, presento primero una clasificación tentativa de las obligaciones posinvestigación. Luego hago una breve reconstrucción conceptual de las formulaciones de las obligaciones posinvestigación en las versiones anteriores de la Declaración y reviso las principales críticas. Finalmente presento un análisis crítico de la nueva formulación de las obligaciones posinvestigación basándome en la discusión de las secciones anteriores. [ABSTRACT] The problem of transitioning research participants when the study is concluded to the appropriate health care is a global problem. The publication of a new version of the Declaration of Helsinki and its public discussion is a great opportunity to rethink this problem. According to my interpretation, the Declaration of Helsinki 2013 identifies two different types of post-trial obligations, namely, (1) obligations of access to health care and (2) the obligations of access to information. The intended beneficiaries of these obligations are individual participants of research studies. And the Declaration identifies the sponsors, researchers and host country governments as the main agents responsible for complying with the post-trial obligations mentioned above. To justify this interpretation of the types, agents and beneficiaries of post-trial obligations, I first introduce a tentative classification of post-trial obligations. Then I make a brief conceptual reconstruction of formulations of post-trial obligations in earlier versions of the Declaration and revise the main critiques. Finally I advance a critical analysis of the new formulation of post-trial obligations based on the discussion in the previous sections. (shrink)

N. Wiener's negative definition of information is well known: it states what information is not. According to this definition, it is neither matter nor energy. But what is it? It is shown how one can follow the lead of dialectical logic as expounded by G.W.F. Hegel in his main work -- "The Science of Logic" -- to answer this and some related questions.

Many philosophers are skeptical about the scientific value of the concept of biological information. However, several have recently proposed a more positive view of ascribing information as an exercise in scientific modeling. I argue for an alternative role: guiding empirical data collection for the sake of theorizing about the evolution of semantics. I clarify and expand on Bergstrom and Rosvall’s suggestion of taking a “diagnostic” approach that defines biological information operationally as a procedure for collecting empirical cases. (...) The more recent modeling-based accounts still perpetuate a theory-centric view of scientific concepts, which motivated philosophers’ misplaced skepticism in the first place. (shrink)

Trials with highly unfavourable risk–benefit ratios for participants, like HIV cure trials, raise questions about the quality of the consent of research participants. Why, it may be asked, would a person with HIV who is doing well on antiretroviral therapy be willing to jeopardise his health by enrolling in such a trial? We distinguish three concerns: first, how information is communicated to potential participants; second, participants’ motivations for enrolling in potentially high risk research with no prospect of (...) direct benefit; and third, participants’ understanding of the details of the trials in which they enrol. We argue that the communication concern is relevant to the validity of informed consent and the quality of decision making, that the motivation concern does not identify a genuine problem with either the validity of consent or the quality of decision making and that the understanding concern may not be relevant to the validity of consent but is relevant to the quality of decision making. In doing so, we derive guidance points for researchers recruiting and enrolling participants into their HIV cure trials, as well as the research ethics committees reviewing proposed studies. (shrink)

This chapter discusses some conceptual undercurrents, which flow beneath the surface of the literature on information and computer ethics (ICE). It focuses on the potential impact of Information and Communication Technologies (ICTs) on our lives. Because of their 'data superconductivity', ICTs are well known for being among the most influential factors that affect the ontological friction in the infosphere. As a full expression of techne, the information society has already posed fundamental ethical problems, whose complexity and global (...) dimensions are rapidly evolving. The task is to formulate an ethical framework that can treat the infosphere as a new environment worth the moral attention and care of the human inforgs inhabiting it. We have begun to see ourselves as connected informational organisms (inforgs), not through some fanciful transformation in our body, but, more seriously and realistically, through the re-ontologization of our environment and of ourselves. (shrink)

Ontology as a branch of philosophy is the science of what is, of the kinds and structures of objects, properties, events, processes and relations in every area of reality. ‘Ontology’ in this sense is often used by philosophers as a synonym of ‘metaphysics’ (a label meaning literally: ‘what comes after the Physics’), a term used by early students of Aristotle to refer to what Aristotle himself called ‘first philosophy’. But in recent years, in a development hardly noticed by philosophers, (...) the term ‘ontology’ has gained currency in the field of computer and information science, and in information-driven research in bioinformatics and related areas. We examine these new developments in applied ontology, and show what lessons they might have for both philosophers and information scientists. (shrink)

Since the Nuremberg Code and the first Declaration of Helsinki, globally there has been increasing adoption and adherence to procedures for ensuring that human subjects in research are as well informed as possible of the study’s reasons and risks and voluntarily consent to serving as subject. To do otherwise is essentially viewed as violation of the human research subject’s legal and moral rights. However, with the recent philosophical concerns about responsible robotics, the limits and ambiguities of research-subjects (...) ethical codes become apparent on the matter of constructing automata that maximally resemble human beings (as defined hereunder). In this case, the automata themselves, as products of research and development, are in the very process of their construction subjects of research and development. However, such research faces a paradox: The subjects cannot give their informed consent to this research for their own development, although their consent would be needed for the research. According to ethical codes, this research would be unethical. The article then explores whether the background concepts giving rise to this paradox could be reframed in order to allow such research to proceed ethically. (shrink)

Este trabajo es un comentario sobre la primera traducción al español de las guías del Reino Unido “Atención después de la investigación: un marco para los comités de ética de investigación del NHS (borrador versión 8.0)”. El comentario se divide en tres partes. En la primera parte, se busca resumir la información básica necesaria para mejorar la lectura comprensiva de la traducción de las guías. En la segunda parte, se analiza una selección de la normativa argentina que trata sobre atención (...) después de la investigación. En la tercera parte, se presentan las principales limitaciones del borrador de las guías y su traducción. El propósito de este comentario es que los futuros lectores y lectoras puedan hacer un uso crítico y deliberado de las guías, en la evaluación de estudios clínicos o como base para la redacción de guías propias sobre atención después de la investigación. ***This work is a commentary on the first Spanish translation of the UK guidelines “Care after research: a framework for NHS research ethics committees (draft version 8.0)”. The commentary is divided into three parts. The first part seeks to summarize the basic information needed to improve reading comprehension of the translation of the guidelines. The second part analyzes a selection of Argentinean regulations dealing with care after research. The third part presents the main limitations of the guidelines draft and its translation. The purpose of this commentary is that future readers can make a critical and deliberate use of guidelines in the assessment of clinical studies or as a basis for drafting their own guidelines on care after research. (shrink)

The current ethical and regulatory framework for research is often charged with burdening investigators and impeding socially valuable research. To address these concerns, a growing number of research ethicists argue that informed consent should be adapted to the risks of research participation. This would require less rigorous consent standards in low-risk research than in high-risk research. However, the current discussion is restricted to cases of research in which the risks of research participation (...) are outweighed by the potential clinical benefits for the individual research participant. Furthermore, current proposals do not address the worry that risk-adapted informed consent may result in enrolling participants into research without their autonomous authorization. In this paper, we show how the standard view of informed consent – consent as autonomous authorization – can be adapted to risk even when the research does not have a favourable risk-benefit profile for the participant. Our argument has two important implications: first, it implies that current and proposed consent standards are not adequately calibrated to risk and, second, that consent standards also need to be adapted to factors other than risk. (shrink)

Ontology as a branch of philosophy is the science of what is, of the kinds and structures of objects, properties, events, processes and relations in every area of reality. ‘Ontology’ in this sense is often used by philosophers as a synonym of ‘metaphysics’ (a label meaning literally: ‘what comes after the Physics’), a term used by early students of Aristotle to refer to what Aristotle himself called ‘first philosophy’. But in recent years, in a development hardly noticed by philosophers, (...) the term ‘ontology’ has gained currency in the field of computer and information science, and in information-driven research in bioinformatics and related areas. We examine these new developments in applied ontology, and show what lessons they might have for both philosophers and information scientists. (shrink)

A recent systematic review of Machine Learning (ML) approaches to health data, containing over 100 studies, found that the most investigated problem was mental health (Yin et al., 2019). Relatedly, recent estimates suggest that between 165,000 and 325,000 health and wellness apps are now commercially available, with over 10,000 of those designed specifically for mental health (Carlo et al., 2019). In light of these trends, the present chapter has three aims: (1) provide an informative overview of some of the recent (...) work taking place at the intersection of text mining and mental health so that we can (2) highlight and analyze several pressing ethical issues that are arising in this rapidly growing field and (3) suggest productive directions for how these issues might be better addressed within future interdisciplinary work to ensure the responsible development of text mining approaches in psychology generally, and in mental health fields, specifically. In Section 1, we review some of the recent literature on text-mining and mental health in the contexts of traditional experimental settings, social media, and research involving electronic health records. Then, in Section 2, we introduce and discuss ethical concerns that arise before, during, and after research is conducted. Finally, in Section 3, we offer several suggestions about how ethical oversight of text-mining research might be improved to be more responsive to the concerns mapped out in Section 2. (shrink)

It has become easy to make a case for the relevance, richness, and importance of philosophical thinking for information research and practice. [Introduction to a special issue].

Background: The internationalization of clinical studies requires a shared understanding of the fundamental ethical values guiding clinical studies. It is important that these values are not only embraced at the legal level but also adopted by clinicians themselves during clinical studies. Objective: Our goal is to provide an insight on how clinicians in Germany and Poland perceive and identify the different ethical issues regarding informed consent in clinical studies. Methods: To gain an understanding of how clinicians view clinical studies in (...) the countries they work in, we carried out semi-structured problem-centered interviews per telephone in Poland (n = 6) and Germany (n = 6). Our interviewees concentrated on three main topics: an appraisal of the normative framework, challenges in the information process and the protection of all participants in clinical studies. Results: Clinicians generally supported the normative framework, even though they considered it quite complex. In the two study countries, a widely noted dilemma in the information process was whether to overburden participants with extensive information or risking leaving out important facts. Clinicians were ready to exclude larger population groups from participating in clinical studies when the information process could not be carried out with standard procedures or when their inclusion was ethically sensitive. Conclusion: Clinicians need to gain a better understanding of the consequences of excluding larger population groups form participating in clinical studies. They should seek assistance in improving the information process for the inclusion of underrepresented groups in clinical studies. (shrink)

Studies on mind-wandering frequently use reading as an experimental task. In these studies, reading is conceived as a cognitive process that potentially offers a contrast to mind-wandering, because it seems to be task-related, goal-directed and stimulus-dependent. More recent work attempts to avoid the dichotomy of successful cognitive processes and processes of mind-wandering found in earlier studies. We approach the issue from the perspective that texts provoke modes of cognitive involvement different from the information processing and recall account that underlies (...) many early mind-wandering studies. After all, reading itself is an umbrella term for activities that are characterized by a variety of phenomenological and functional signatures. We conceptualize reading and mind-wandering in relation to each other through the framework of enculturated predictive processing, which is informed by research in literary studies. Earlier accounts think of reading predominantly in terms of the construction of situation models that organize textual information. By contrast, enculturated predictive processing foregrounds shifting stances readers can take in relation to the text. Characters featuring in literary texts might be mind-wandering themselves, or passages in literary style might make the construction of a clearly defined situational model impossible. Furthermore, we take into account that texts often elicit mind-wandering through the construction of task-relevant and attention-driven virtual scenarios in readers' minds. This more complex account of reading can enrich recent attempts to understand mind-wandering as a complex, multi-dimensional phenomenon. The study of mind-wandering can benefit, we argue, from a closer attention to the process of reading and to the texts it deploys as stimuli. The emerging perspective from enculturated predictive processing and literary studies makes distinctions in reading that in turn enable research on mind-wandering to ask more precise questions about (1) different kinds of mind-wandering, (2) different modes of reading, and (3) how and where they interconnect across time. (shrink)

Semantic information is usually supposed to satisfy the veridicality thesis: p qualifies as semantic information only if p is true. However, what it means for semantic information to be true is often left implicit, with correspondentist interpretations representing the most popular, default option. The article develops an alternative approach, namely a correctness theory of truth (CTT) for semantic information. This is meant as a contribution not only to the philosophy of information but also to the (...) philosophical debate on the nature of truth. After the introduction, in Sect. 2, semantic information is shown to be translatable into propositional semantic information (i). In Sect. 3, i is polarised into a query (Q) and a result (R), qualified by a specific context, a level of abstraction and a purpose. This polarization is normalised in Sect. 4, where [Q + R] is transformed into a Boolean question and its relative yes/no answer [Q + A]. This completes the reduction of the truth of i to the correctness of A. In Sects. 5 and 6, it is argued that (1) A is the correct answer to Q if and only if (2) A correctly saturates Q by verifying and validating it (in the computer science’s sense of “verification” and “validation”); that (2) is the case if and only if (3) [Q + A] generates an adequate model (m) of the relevant system (s) identified by Q; that (3) is the case if and only if (4) m is a proxy of s (in the computer science’s sense of “proxy”) and (5) proximal access to m commutes with the distal access to s (in the category theory’s sense of “commutation”); and that (5) is the case if and only if (6) reading/writing (accessing, in the computer science’s technical sense of the term) m enables one to read/write (access) s. Sect. 7 provides some further clarifications about CTT, in the light of semantic paradoxes. Section 8 draws a general conclusion about the nature of CTT as a theory for systems designers not just systems users. In the course of the article all technical expressions from computer science are explained. (shrink)

Digitisation of research data is widely increasing all around the world because it needs more and development of enormous digital technologies. Data curation services are starting to offer many libraries. Research data curation is the collective invaluable and reusable information of the researchers. Collected data preservation is more important. The majority of the higher education institutes preserved the research data for their students and researchers. It is stored for a long time using various formats. It is (...) called research data preservation. Without proper research data management plan and implementation cannot curate the research data. The aim of the study is to identify the Asian Library and Information Science (LIS) faculties’ experiences in the research data preservation and curation during their research. Data management, curation and preservation all are interlinked. For reuse of the research data; data curation is an essential role. For this research, we adopted a survey method and an online questionnaire was shared with 1400 LIS professionals, belonging to the Asian region but the completed study respondents are 125 university faculties from various Asian countries. The study findings are 76.8 per cent generated statistical data followed by 58.4 per cent textual files. By far, the most preferable data analysis tool is Microsoft Excel 82.4 per cent. Moreover, the result shows that generated data is mostly stored by personal computers and laptop hard disks. This study concludes LIS faculties having adequate skills and knowledge on data curation and preservation even though they are expecting more services from their academic institute …. (shrink)

Background: Biomedical research nowadays is increasingly carried out in multinational and multicenter settings. Due to disparate national regulations on various ethical aspects, such as informed consent, there is the risk of ethical compromises when involving human subjects in research. Although the Declaration of Helsinki is the point of reference for ethical conduct of research on humans, national normative requirements may diverge from its provisions. The aim of this research is to examine requirements on informed consent in (...) biomedical research in Germany, Poland, and Russia to determine how each national regulatory framework relates to the provisions of the Declaration of Helsinki. Methods: For this analysis, we conducted a search of the legal databases “Gesetze im Internet” for Germany, “Internetowy System Aktow Prawnych” for Poland, and “ГAPAHT – Garant” for Russia. The search was complemented by a review of secondary literature contained in the databases Google Scholar, PubMed, Polish National Library, and eLibrary ru. We have identified 21 normative regulations containing provisions on informed consent in clinical research in all three countries. The content of these documents was systematically categorized and analyzed. Results: The normative framework in all three countries shows a strong commitment towards the core ethical principles of research envisaged in the Declaration of Helsinki. Nevertheless, provisions on informed consent vary between these three countries. The differences range from the method and language in which information should be provided, through the amount of information required to be disclosed, to the form of documenting consent or withdrawal. In the case of research on vulnerable groups, these differences are particularly visible. Conclusions: The identified differences can negatively impact the ethical conduct of international clinical studies. Attention needs to be paid that flexibilities within national regulations are not misused to undermine the protection of research subjects. Achieving global or regional legislative harmonization might prove impossible. Such lack of legal consensus reinforces the significance of the international ethical agreements. (shrink)

The AISDL Team is happy to inform the research community that the “near-suicide phenomenon” (NS) paper passed the milestone of 400 thousand reads on July 28, 2023. The day was one and a half months after the study reached the 300-thousand-read milestone on June 15, 2023. The previous dates are April 7 (100K) and May 1 (200K).

Research ethics committees and institutional review boards spend considerable time developing, scrutinising, and revising specific consent processes and materials for survey-based studies conducted on crowdsourcing and online recruitment platforms such as MTurk and Prolific. However, there is evidence to suggest that many users of ICT services do not read the information provided as part of the consent process and they habitually provide or refuse their consent without adequate reflection. In principle, these practices call into question the validity of (...) their consent. In this paper we argue that although the ‘no read problem’ and the routinisation of consent may apply to research participants’ consent practices for studies on crowdsourcing platforms, this is not a serious problem. Furthermore, given that the informational requirements for informed consent in these contexts are minimal, we argue that these participants are, nevertheless, sufficiently informed to give valid consent. We conclude that research ethics committees and institutional review boards should only agonise over the precise details of the informed consent process and materials in those rare cases where appreciable risks to research participants need to be managed. (shrink)

The paper investigates the understanding of quantum indistinguishability after quantum information in comparison with the “classical” quantum mechanics based on the separable complex Hilbert space. The two oppositions, correspondingly “distinguishability / indistinguishability” and “classical / quantum”, available implicitly in the concept of quantum indistinguishability can be interpreted as two “missing” bits of classical information, which are to be added after teleportation of quantum information to be restored the initial state unambiguously. That new understanding of quantum (...) indistinguishability is linked to the distinction of classical (Maxwell-Boltzmann) versus quantum (either Fermi-Dirac or Bose-Einstein) statistics. The latter can be generalized to classes of wave functions (“empty” qubits) and represented exhaustively in Hilbert arithmetic therefore connectible to the foundations of mathematics, more precisely, to the interrelations of propositional logic and set theory sharing the structure of Boolean algebra and two anti-isometric copies of Peano arithmetic. (shrink)

When you type the word “serendipity” in a word-processor application such as Microsoft Word, the autocorrection engine suggests you choose other words like “luck” or “fate”. This correcting act turns out to be incorrect. However, it points to the reality that serendipity is not a familiar English word and can be misunderstood easily. Serendipity is a very much scientific concept as it has been found useful in numerous scientific discoveries, pharmaceutical innovations, and numerous humankind’s technical and technological advances. Therefore, there (...) have been many books written around the concept. So why do we need this additional book? This is not just another book about serendipity. It has evolved from the Editor’s question lingering for a decade after finishing his widely cited article (coauthored with Prof. Nancy K. Napier of Boise State University, ID, USA) “Serendipity as a strategic advantage?” in T. Wilkinson’s edited volume Strategic Management in the 21st Century, published by Praeger. The Editor and contributing authors have tried to achieve the following in this title. Demystifying the Serendipity Myth The phenomenon of serendipity has always been thought of as a “miracle”. It is the mystery of human innovation and one of the ultimate secrets of our society. But serendipity is not just a lucky coincidence nor any hidden conspiracy. This book explores the science of the information process behind this seemingly miraculous phenomenon. It connects human society with nature, going back to the root of our existence and looking at the flame of survival to discover the harmony in making creativity. Presenting the nuts and bolts of being an adventurer of science The authors present their conceptual investigations into serendipity’s nature and its mechanism by examining interesting real events and stories. The content is thought-provoking, and readers are led to question and explore their own life stories and problems along the journey of reading this book. Catching an elusive high-value target requires great strategies and efforts. But there are no dark secrets here because this is the “way of nature” – how we humans have always strived for innovation without realizing the blueprints behind such processes. Unlike other books on serendipity, this book will show you that a powerful “secret” is closer than you think. Delivering practical uses for different audiences By understanding the conditionality and survival drivers of serendipity, individuals or organizations can make better decisions on creating the right environment to facilitate the encounter and attainment of this valuable phenomenon. For scientists: With clear explanations of the information processes underlying serendipity, flexible theoretical frameworks of mindsponge and the 3D principle of creativity, researchers are provided with the tools they need to dig deeper into their own fields of study and find practical applications, be it psychology, economics, sociology, or anything that involves innovation (which is, in fact, every scientific discipline). For curious casual readers: Everybody needs innovation to make breakthroughs or spice up one’s life. If you think great ideas come to people randomly from an unknown fairy place, this book will convince you otherwise without taking away that awe and wonder. But above all, you will know how to become more creative, scientifically and straightforwardly, with no snake oil and no weird tricks. For ambitious business people: The flame that brought about great successes throughout human history is within you. But you can only use it if you understand it. While others wait for serendipity to come, you will be able to actively hunt for those precious moments. As it has always been: the best hunters triumph, not the passive wanderers. And in this age of information chaos, finding the golden fruits is not easy. Those from information technology know this problem well, and this book is the treasure map that they have been seeking to navigate that stormy ocean looking for jewels. Like a kingfisher tracking its prey through the water, waiting to gracefully strike, with serendipity, a person seizes the prize of creativity amid the chaos of life. ¤ ¤ ¤ Official introduction: The book explores the nature, underlying causes, and the information processing mechanism of serendipity. It proposes that natural or social survival demands drive serendipity, and serendipity is conditional on the environment and the mindset, on both individual and collective levels. From Darwin's evolution theory to Sun Tzu's war tactics, major innovations throughout human history are unified by this key concept. In the rapidly changing world, information is abundant but rather chaotic. The adaptive power of serendipity allows people to notice treasures within this wild sea, but only for those who understand how it works. To increase the probability of encountering and attaining serendipity, one should employ the mindsponge mechanism and the 3D process of creativity, for without these frameworks, serendipity is truly an elusive target. The book also discusses methods to build environments and cultures rich in navigational and useful information to maximize the chance of finding and capitalizing on serendipity. As a skill, serendipity has a resemblance to how kingfishers observe and hunt their prey. (shrink)

In Québec, the Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information provides an exception to transparency to most public institutions where public health research is conducted by allowing them to not disclose their uses of personal data. This exceptionalism is ethically problematic due to important concerns and we argue that all those who conduct research should be transparent and accountable for the work they do in the public interest.

This book offers a distinctive treatment of Hayek's ideas as a "research program". It presents a detailed account of aspects of Hayek's intellectual development and of problems that arise within his work, and then offers some broad suggestions as to ways in which the program initiated in his work might be developed further. The book discusses how Popper and Lakatos' ideas about "research programs" might be applied within political theory. There then follows a distinctive presentation of Hayek's intellectual (...) development up to The Road to Serfdom, together with critical engagement with his later ideas. The discussion draws on a full range of his writings, makes use of some neglected earlier work on social theory and law, and also draws on archival material. This book should appeal to anyone with an interest in Hayek's work, as well as to those with a concern for twentieth century intellectual history. (shrink)

After introducing the new field of cultural evolution, we review a growing body of empirical evidence suggesting that culture shapes what people attend to, perceive and remember as well as how they think, feel and reason. Focusing on perception, spatial navigation, mentalizing, thinking styles, reasoning (epistemic norms) and language, we discuss not only important variation in these domains, but emphasize that most researchers (including philosophers) and research participants are psychologically peculiar within a global and historical context. This rising (...) tide of evidence recommends caution in relying on one’s intuitions or even in generalizing from reliable psychological findings to the species, Homo sapiens. Our evolutionary approach suggests that humans have evolved a suite of reliably developing cognitive abilities that adapt our minds, information-processing abilities and emotions ontogenetically to the diverse culturally-constructed worlds we confront. (shrink)

Deception of subjects is used frequently in the social sciences. Examples are provided. The ethics of experimental deception are discussed, in particular various maneuvers to solve the problem. The results have implications for the use of deception in the biomedical sciences.

This perspective paper analyzes the rising threat of retracted scientific works and the challenges of preventing the continued spreading and use of the retracted science; further, a framework is proposed for research and actions to effectively manage retractions in the information ecosystem. The precipitous increase in retractions of scientific publications is real and the complexity of retracting publications challenges current IR systems and people's information behaviors. Retracting published, especially peer-reviewed, papers in prestigious venues is a complex phenomenon (...) involving various entities through often time-consuming processes. These publications may be accessible from the original venues, digital archives, or free-access databases, but these systems differ in retrievability and output. Many systems do not identify the retractions or reasons for retractions; most systems do not treat the retracted paper and its related notices (retraction or correction) as an integrated entity. Studies found that many retracted publications continue to be cited post-retraction as valid science. A new threat is the widely spread of retracted publications on social media. Retracting invalid scientific publications has serious implications in the real world. Based on current findings, we propose (1) a framework for further research; (2) a DOI resolution to integrate the documents related to retraction/correction; (3) a structured facet taxonomy for representing and indexing the retracted, corrected, or republished publications in databases; (4) a retraction registry or database with personalized AI helper for researchers to tract retracted publications; (5) an approach for understanding how retracted publications are circulated on social media. (shrink)

After long arguments between positivism and falsificationism, the verification of universal hypotheses was replaced with the confirmation of uncertain major premises. Unfortunately, Hemple proposed the Raven Paradox. Then, Carnap used the increment of logical probability as the confirmation measure. So far, many confirmation measures have been proposed. Measure F proposed by Kemeny and Oppenheim among them possesses symmetries and asymmetries proposed by Elles and Fitelson, monotonicity proposed by Greco et al., and normalizing property suggested by many researchers. Based on (...) the semantic information theory, a measure b* similar to F is derived from the medical test. Like the likelihood ratio, measures b* and F can only indicate the quality of channels or the testing means instead of the quality of probability predictions. Furthermore, it is still not easy to use b*, F, or another measure to clarify the Raven Paradox. For this reason, measure c* similar to the correct rate is derived. Measure c* supports the Nicod Criterion and undermines the Equivalence Condition, and hence, can be used to eliminate the Raven Paradox. An example indicates that measures F and b* are helpful for diagnosing the infection of Novel Coronavirus, whereas most popular confirmation measures are not. Another example reveals that all popular confirmation measures cannot be used to explain that a black raven can confirm “Ravens are black” more strongly than a piece of chalk. Measures F, b*, and c* indicate that the existence of fewer counterexamples is more important than more positive examples’ existence, and hence, are compatible with Popper’s falsification thought. (shrink)

There have been several calls from LIS researchers for practical or applied research not to ignore the epistemological assumptions underlying the systems and artifacts they design lest they showcase only the dominant theory at a given time. Others have also deplored the "epistemological promiscuity" or "eclecticism" of the field, its incessant borrowing of theories and models from elsewhere and the fact that the field has largely neglected the contributions that philosophy and epistemology could have made in its research. (...) This problem raises that of the boundaries of LIS and is all the more troublesome because boundaries between epistemological theories are fuzzy. Indeed, some epistemological theories share the same basic assumptions or are historically derived from one another. Gathering a wide array of acknowledged theorists in philosophy of science and epistemology, this panel aims to examine how research work in the LIS field can clearly articulate the epistemological assumptions underlying that research and under what constraints this can be achieved. The topic is of prime importance to Information studies as a whole and to ASIST as the scientific flag bearer of information scientists worldwide. (shrink)

Recent research into the nature of self in artificial and biological systems raises interest in a uniquely determining immutable sense of self, a “metaphysical ‘I’” associated with inviolable personal values and moral convictions that remain constant in the face of environmental change, distinguished from an object “me” that changes with its environment. Complementary research portrays processes associated with self as multimodal routines selectively enacted on the basis of contextual cues informing predictive self or world models, with the notion (...) of the constant, per-vasive and invariant sense of self associated with a multistable attractor set aiming to ensure personal integrity against threat of disintegrative change. This paper proposes that an immutable sense of self emerges as a global attractor which can be described as a project ideal self-situation embodied in frontal medial processes during more or less normal adolescent development, and that thereafter serves to orient agency in the more or less free development of embodied potentials over the life course in effort to realize project conditions, phenomenally identified with the felt pull towards this end as purpose of and source of meaning in life. So oriented, life-long self-development aims to embody solutions to problems at different timescales depending on this embodied purpose, ultimately in the service of evolutionary processes securing organism populations against threats of disintegrative change over timespans far beyond that of the individual. After characterizing the target sense of self, research circling this target is briefly surveyed. Self as global project and developmental neural correlates are proposed. Then, the paper discusses some implications for research in biological and artificial systems. Building from earlier work in cognitive neurorobotics, discussion affirms the value of reinforcement rituals including prayer in metaphysical self-development, considers implications for value alignment and rights associated with free will in the context of artificial intelligence and robot religion, and concludes by emphasizing the importance of self-development toward project ideals as source of meaning in life in the current social-political environment. (shrink)

This chapter provides a high-level overview of key ethical issues raised by the use of surveillance technologies, such as digital contact tracing, disease surveillance, and vaccine passports, to combat the COVID-19 pandemic. To some extent, these issues are entirely familiar. I argue that they raise old questions in new form and with new urgency, at the intersection of information ethics, research ethics, and public health. Whenever we deal with data-driven technologies, we have to ask how they fare in (...) relation to important values like privacy, fairness, transparency, and accountability—values emphasized by information ethics scholars. Likewise, when such technologies put individuals at risk in order to drive scientific research and knowledge construction, we have to ask how they implicate values such as autonomy, beneficence and non-maleficence, and justice—values central to research ethics. And as researchers focusing on health information have long argued, when the data collected by these technologies pertain to individuals and public health, these ethical issues take on a special cast. -/- It is also true, however, that the pandemic has placed these questions in a new and revealing light. I highlight three insights from information ethics and research ethics that can help us navigate this difficult terrain. First, the value of privacy is instrumental, not absolute—there is nothing wrong with asking how to balance privacy against other important values. Second, privacy has both individual and social importance. Weighing privacy, on one hand, and public health, on the other, is not, therefore, a contest between individual and collective interests. Rather, it is an attempt to balance disparate public goods. Third, we ought to put these kinds of ethical decisions in the hands of third parties, rather than leaving them up to those who directly stand to benefit from them. In the case of pandemic surveillance technologies, this should mean more public, democratic oversight. (shrink)

Over the last few decades, multiple studies have examined the understanding of participants in clinical research. They show variable and often poor understanding of key elements of disclosure, such as expected risks and the experimental nature of treatments. Did the participants in these studies give valid consent? According to the standard view of informed consent they did not. The standard view holds that the recipient of consent has a duty to disclose certain information to the profferer of consent (...) because valid consent requires that information to be understood. The contents of the understanding and disclosure requirements are therefore conceptually linked. In this paper, we argue that the standard view is mistaken. The disclosure and understanding requirements have distinct grounds tied to two different ways in which a token of consent can be rendered invalid. Analysis of these grounds allows us to derive the contents of the two requirements. It also implies that it is sometimes permissible to enroll willing participants who have not understood everything that they ought to be told about their clinical trials. (shrink)

After ratifying the Framework Convention for Tobacco Control in 2004, Bangladesh enacted anti-tobacco laws, policies, and administrative measures. Evidence suggests that the progress so far has not been significant, and Bangladesh will most likely fail to meet its target to become tobacco-free by 2040. This study undertakes a national-level political economy analysis to explore the dynamics that affect the processes of required tobacco policy reforms and implementation. Based on a desk review of pertinent pieces of literature and key informant (...) interviews, this research examines the political behavior of key individuals, institutional reform initiatives, and the government’s commitment to the tobacco control agenda. The findings indicate that the political will of becoming tobacco-free is explicitly present in key narratives. However, intra-government conflict of interests and incentives, the skewed commitment of government bodies, state-business nexus, incapacity of vital organizations, and the dubious role of key individuals and committees fail to translate this will into active implementation. The article concludes that the idea of tobacco control remains a strategic accommodation, and its implementation requires genuine commitment and wider public support. The government must confer adequate authority and resources to the national tobacco control cell and call for agencies to convene to the common of creating a tobacco-free Bangladesh. (shrink)