Objective To determine the attitudes of Egyptian patients regarding their participation in research and with the collection, storage and future use of blood samples for research purposes. Design Cross-sectional survey. Study population Adult Egyptian patients (n=600) at rural and urban hospitals and clinics. Results Less than half of the study population (44.3%) felt that informed consent forms should provide research participants the option to have their blood samples stored for future research. Of these participants, 39.9% thought that consent forms should (...) include the option that future research be restricted to the illness being studied. A slight majority (66.2%) would donate their samples for future genetic research. Respondents were more favourable towards having their blood samples exported to other Arab countries (62.0%) compared with countries in Europe (41.8%, p<0.001) and to the USA (37.2%, p<0.001). Conclusions This study shows that many individuals do not favour the donation of a blood sample for future research. Of those who do approve of such future research, many favour a consent model that includes an option restricting the future research to the illness being studied. Also, many Egyptians were hesitant to have their blood samples donated for genetic research or exported out of the Arab region to the USA and European countries. Further qualitative research should be performed to determine the underlying reasons for many of our results. (shrink)

In qualitative interviews with a diverse group of experts, the vast majority believed unregulated researchers should seek out independent oversight. Reasons included the need for objectivity, protecting app users from research risks, and consistency in standards for the ethical conduct of research. Concerns included burdening minimal risk research and limitations in current systems of oversight. Literature and analysis supports the use of IRBs even when not required by regulations, and the need for evidence-based improvements in IRB processes.

We surveyed IRB chairs' perspectives on offering individual genetic research results to participants and families, including family members of deceased participants, and the IRB's role in addressing these issues. Given a particular hypothetical scenario, respondents favored offering results to participants but not family members, giving choices at the time of initial consent, and honoring elicited choices. They felt IRBs should have authority regarding the process issues, but a more limited role in medical and scientific issues.

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...) negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

This article is the lead piece in a special report that presents the results of a bioethical investigation into chimeric research, which involves the insertion of human cells into nonhuman animals and nonhuman animal embryos, including into their brains. Rapid scientific developments in this field may advance knowledge and could lead to new therapies for humans. They also reveal the conceptual, ethical, and procedural limitations of existing ethics guidance for human‐nonhuman chimeric research. Led by bioethics researchers working closely with an (...) interdisciplinary work group, the investigation focused on generating conceptual clarity and identifying improvements to governance approaches, with the goal of helping scholars, funders, scientists, institutional leaders, and oversight bodies (embryonic stem cell research oversight [ESCRO] committees and institutional animal care and use committees [IACUCs]) deliver principled and trustworthy oversight of this area of science. The article, which focuses on human‐nonhuman animal chimeric research that is stem cell based, identifies key ethical issues in and offers ten recommendations regarding the ethics and oversight of this research. Turning from bioethics’ previous focus on human‐centered questions about the ethics of “humanization” and this research's potential impact on concepts like human dignity, this article emphasizes the importance of nonhuman animal welfare concerns in chimeric research and argues for less‐siloed governance and oversight and more‐comprehensive public communication. (shrink)

This book's importance is derived from three sources: careful conceptualization of teacher induction from historical, methodological, and international perspectives; systematic reviews of research literature relevant to various aspects of teacher induction including its social, cultural, and political contexts, program components and forms, and the range of its effects; substantial empirical studies on the important issues of teacher induction with different kinds of methodologies that exemplify future directions and approaches to the research in teacher induction.

Genomic research may uncover results that have direct actionable benefit to the individual. An emerging debate is the degree to which researchers may have responsibility to offer results to the biological relatives of the research participant. In a companion study to one carried out in the United States, we describe the attitudes of Canadian Research Ethics Board chairs to this issue and their opinions as to the role of the REB in developing related policy.

Probability theory is important because of its relevance for decision making, which also means: its relevance for the single case. The propensity theory of objective probability, which addresses the single case, is subject to two problems: Humphreys’ problem of inverse probabilities and the problem of the reference class. The paper solves both problems by restating the propensity theory using (an objectivist version of) Pearl’s approach to causality and probability, and by applying a decision-theoretic perspective. Contrary to a widely held (...) view, decision making on the basis of given propensities can proceed without a subjective-probability supplement to propensities. (shrink)

Understanding Hume’s theory of space and time requires suspending our own. When theorizing, we think of space as one huge array of locations, which external objects might or might not occupy. Time adds another dimension to this vast array. For Hume, in contrast, space is extension in general, where being extended is having parts arranged one right next to the other like the pearls on a necklace. Time is duration in general, where having duration is having parts occurring one aft (...) er another like the notes of a song. Hume’s diff erent view stems from his empiricism, his reliance on experience and observation as the foundation of our concepts. Nothing in our experience suggests a single vast array of locations. Rather, we simply notice that bodies are similar insofar as they have lengths that can be compared. Likewise, nothing in our experience suggests a single dimension of time. Rather, we simply notice that diff erent successions are similar insofar as they have durations that can be compared. Th eorizing that these observations show there to be a single multidimensional array goes well beyond the evidence for Hume. As a skeptic, he fi nds himself unable to assent to theories that stray too far beyond the deliverances of the senses. For Hume, the ideas of space and time are each a general idea of simple—partless— objects arrayed in a certain manner. He argues that the structures of the ideas of space and time refl ect the structures of space and time. Th erefore, space and time are not infi - nitely divisible, and they are ways simple objects are arrayed. Consequently, there is no such thing as empty space nor time without change. (shrink)

The woman at the heart of Pearl Jam’s “Better Man” (Vitalogy, 1994) is trapped. She has committed herself to a relationship that makes her miserable, but she sees no viable alternative to staying in it. She mourns a past self who might have been able to leave and dreams of a dierent way things might be, but remains unable to move on. It is tempting to view her with a mixture of pity and frustration (reecting some of the personal (...) circumstances -- Eddie Vedder’s mother’s second marriage -- informing its composition). As a moral being, she appears to be hopelessly compromised by her situation, even as she is also doing her best to survive under conditions designed to undermine her autonomy and keep her trapped (as abusive relationships do). The song is not so much critical of her choice to stay as it is confused by and resigned to it. -/- What keeps a person where she so clearly does not want to be? -/- The song itself was, at least early in its recorded life for Pearl Jam, similarly compromised. Vedder appears to have thought of it as too “accessible”, too much of a pop hit for the kind of musical vision he had in mind either for Vs. (for which it had originally been intended) or for Vitalogy; by this point in the band’s career, he was ever more actively resisting success, accessibility, and everything that went with the version of rock star life imposed collectively on the band and on him as an individual. The form that resistance took was an exercise of artistic and other forms of control, sometimes exercised in ways that were destructive or damaging (to the band and its internal relationships, its fame or success, its image, its artistic identity, etc.). -/- What keeps an artist or a band where they so clearly do not want to be? In this chapter, I oer a loose exploration of some possible philosophical approaches to answering the question of what keeps us where we are, like it or not, worked out in parallel through the lyrics of “Better Man” and the circumstances of the song’s eventual arrival Vitalogy. My main interest is in examining the ethical dimensions of the question itself -- what, if anything, are we morally required or expected to do under compromised or compromising conditions? My main suggestion is that answering the question might require of us a messier, more ambivalent, and perhaps more compassionate notion of moral agency, inspired by Simone Weil’s work on affliction. (shrink)

Since ancient Greece’s “megalopolis,” the concept of vast cities has loomed in the urban discourse. A century ago, English planner Patrick Geddes warned about a growing imbalance between traditional society and ever-larger conurbations, an anxiety that Lewis Mumford later invoked to predict that urban hubris would inevitably collapse of its own weight. In 1961, by contrast, the geographer Jean Gottman surveyed the interconnected agglomeration stretching from Washington, D.C. up the east coast of the United States to the cities of southern (...) New England, and more optimistically highlighted this new urban form’s governance potential. Today, the question is not whether urbanism will arrive at the scale that so concerned Geddes and Mumford yet engaged Gottman—it already has. Commentators and scholars increasingly recognize that vast polycentric urban regions are displacing cities and metropolitan areas as the locus of modern growth and development. Eleven distinct urban-centered megaregions, for example, concentrate the bulk of the population and economic activity in the United States, and similar clusters are coalescing globally, from Greater Tokyo, Beijing, and the Pearl River Delta, to the arc from São Paulo to Rio de Janeiro, to the European urban spine running from London to Milan. Grappling with the phenomenon’s legal-institutional dimensions—whether and how to formalize governance to match this scale—requires more than transposing the descriptive and normative discourse on metropolitanism. Crosscurrents around fragmentation, efficiency, inequality, and democratic legitimacy refract, but there are distinct arguments for fostering governance—and equally particular concerns to anticipate—with the rise of the megalopolis. (shrink)

A hub and spoke model offers an effective and efficient approach to providing informed guidance to those who need it. The National Center for Ethics in Health Care (NCEHC) at the Veterans Health Administration, Department of Veterans Affairs, is the largest known hub and spoke healthcare ethics delivery model. In this article, we describe ways NCEHC’s hub and spoke configuration succeeded during the COVID- 19 pandemic, as well as limitations of the model and possible improvements to inform adoption at other (...) healthcare systems. (shrink)

Trevena and Miller provide further evidence that readiness potentials occur in the brain prior to the time that participants claim to have initiated a voluntary movement, a contention originally forwarded by Libet, Gleason, Wright, and Pearl . In their examination of this issue, though, aspects of their data lead them to question whether their measurement of the initiation of a voluntary movement was accurate. The current article addresses this concern by providing a direct analysis of biases in this task. (...) This was done by asking participants to make subjective timing decisions regarding a stimulus that could be measured objectively. Our findings suggest that their timing task was indeed biased such that participants' tend to report events as happening approximately 70 ms later than they actually happened. Implications for the original Libet et al. claims are discussed. (shrink)

This book is a compilation of some of the wise sayings of M Fethullah Gülen, each of which is a criterion or pearl of wisdom by which we may seek and find our way in todays world, or a light illuminating our way, to live as a responsible ...

Causality offers the first comprehensive coverage of causal analysis in many sciences, including recent advances using graphical methods. Pearl presents a unified account of the probabilistic, manipulative, counterfactual and structural approaches to causation, and devises simple mathematical tools for analyzing the relationships between causal connections, statistical associations, actions and observations. The book will open the way for including causal analysis in the standard curriculum of statistics, artificial intelligence, business, epidemiology, social science and economics.

This study described the relationships between academic class and student moral sensitivity and reasoning and between curriculum design components for ethics education and student moral sensitivity and reasoning. The data were collected from freshman (n = 506) and senior students (n = 440) in eight baccalaureate nursing programs in South Korea by survey; the survey consisted of the Korean Moral Sensitivity Questionnaire and the Korean Defining Issues Test. The results showed that moral sensitivity scores in patient-oriented care and conflict were (...) higher in senior students than in freshman students. Furthermore, more hours of ethics content were associated with higher principled thinking scores of senior students. Nursing education in South Korea may have an impact on developing student moral sensitivity. Planned ethics content in nursing curricula is necessary to improve moral sensitivity and moral reasoning of students. (shrink)

Ethics issues in the areas of science, technology and medicine have emerged during the last few decades. Many countries have responded by establishing ethics committees at the national level. Identification of National Ethics Committees (NECs) in the Eastern Mediterranean (EM) region and the extent of their functions and capacity would be helpful in developing capacity building programs that address the needs of these committees. Accordingly, we conducted a survey to determine the characteristics of existing NECs in the EM region.

In _A Question of Time_, Joel Pearl offers a new reading of the foundations of psychoanalytic thought, indicating the presence of an essential lacuna that has been integral to psychoanalysis since its inception. Pearl returns to the moment in which psychoanalysis was born, demonstrating how Freud had overlooked one of the most principal issues pertinent to his method: the question of time. The book shows that it is no coincidence that Freud had never methodically and thoroughly discussed time (...) and that the metaphysical assumption of linear time lies at the very heart of Freudian psychoanalysis. Pearl’s critical reading of Freud develops through an original dialogue that he creates with the philosophy of Martin Heidegger and, specifically, with the German philosopher’s notion of temporality. Pearl traces the encounter between Freud and Heidegger by observing the common inspiration shaping their thinking: philosopher Franz Brentano, who taught both Freud and Edmund Husserl, Heidegger’s mentor. The book travels down an alternate path, one overlooked by Freudian thought – a path leading from Brentano, through Husserl and onto Heidegger’s notion of time, which is founded on the ecstatic’ interrelation of past, present and future. (shrink)

Written by one of the preeminent researchers in the field, this book provides a comprehensive exposition of modern analysis of causation. It shows how causality has grown from a nebulous concept into a mathematical theory with significant applications in the fields of statistics, artificial intelligence, economics, philosophy, cognitive science, and the health and social sciences. Judea Pearl presents and unifies the probabilistic, manipulative, counterfactual, and structural approaches to causation and devises simple mathematical tools for studying the relationships between causal (...) connections and statistical associations. Cited in more than 2,100 scientific publications, it continues to liberate scientists from the traditional molds of statistical thinking. In this revised edition, Judea Pearl elucidates thorny issues, answers readers' questions, and offers a panoramic view of recent advances in this field of research. Causality will be of interest to students and professionals in a wide variety of fields. Dr Judea Pearl has received the 2011 Rumelhart Prize for his leading research in Artificial Intelligence and systems from The Cognitive Science Society. (shrink)

The book can also be used as an excellent text for graduate-level courses in AI, operations research, or applied probability.

This article illustrates how a collaborative research process can successfully engage an underserved minority community to address health disparities. Pacific Islanders, including the Marshallese, are one of the fastest growing US populations. They face significant health disparities, including extremely high rates of type 2 diabetes. This article describes the engagement process of designing patient‐centered outcomes research with Marshallese stakeholders, highlighting the specific influences of their input on a randomized control trial to address diabetes. Over 18 months, an interdisciplinary research team (...) used community‐based participatory principles to conduct patient‐engaged outcomes research that involved 31 stakeholders in all aspects of research design, from defining the research question to making decisions about budgets and staffing. This required academic researcher flexibility, but yielded a design linking scientific methodology with community wisdom. (shrink)

Judea Pearl has been at the forefront of research in the burgeoning field of causal modeling, and Causality is the culmination of his work over the last dozen or so years. For philosophers of science with a serious interest in causal modeling, Causality is simply mandatory reading. Chapter 2, in particular, addresses many of the issues familiar from works such as Causation, Prediction and Search by Peter Spirtes, Clark Glymour, and Richard Scheines. But philosophers with a more general interest (...) in causation will also profit from reading Pearl’s book, especially the material in chapters 7, 9, and 10, which is self-contained and less technical than other parts of the book. The present review is aimed primarily at readers of the second type. (shrink)

This paper is an update of the documents we have concerning the Acts of the Christian martyrs, focused on three main aspects: 1) the kind of acts we know of and their classification from the point of view of their historic value; 2) the versions or editions of the texts that are most accepted by scholars; 3) the relevance of the different parts that make up these documents in order to discern the original text from passages that were rewritten or (...) underwent later variations. In this way, the article offers an exhaustive list of the documents for use in researching Christian martyrs in the Roman period. (shrink)

We support Jaswal & Akhtar's interrogation of social motivational accounts of autism and discuss two sources of bias that contribute to how others construe autistic people's communications: an experience-based bias that limits our ability to discern the speaker's action as communicative and a prejudice against the credibility of certain speakers that limits a listener's willingness to believe their testimony.

We show in this paper that the AGM postulates are too weak to ensure the rational preservation of conditional beliefs during belief revision, thus permitting improper responses to sequences of observations. We remedy this weakness by proposing four additional postulates, which are sound relative to a qualitative version of probabilistic conditioning. Contrary to the AGM framework, the proposed postulates characterize belief revision as a process which may depend on elements of an epistemic state that are not necessarily captured by a (...) belief set. We also show that a simple modification to the AGM framework can allow belief revision to be a function of epistemic states. We establish a model-based representation theorem which characterizes the proposed postulates and constrains, in turn, the way in which entrenchment orderings may be transformed under iterated belief revision. (shrink)

The following Addenda and some Corrigenda were derived for the most part from manuscripts examined in the summer of 1964 and in the spring and summer of 1965, 1967 at Bologna University ; London, British Museum ; Munich, Bayerische Staats-Bibliothek, Codex Latinus Monacensis ; Orlèans; Oxford, the Bodleian ; and Merton College ; Paris, Bibliotheque nationale , and University ; Tours; Vatican, Bibliotheca Apostolica Vaticana ; and Vienna, National-Bibliothek . A number are noted from other sources, namely Silvestre , Wickersheimer (...) , et alia. They supplement the late Lynn Thorndike's “Additional Addenda et Corrigenda” in Speculum , and are here offered for the convenience of users of the Catalogue of Incipits. jQuery.click { event.preventDefault(); }). (shrink)