Accessing BRCA1/2 data facilitates the detection of disease-associated variants, which is critical to informing clinical management of risks. BRCA1/2 data sharing is complex and many practices exist. We describe current BRCA1/2 data-sharing practices, in the United States and globally, and discuss obstacles and incentives to sharing, based on 28 interviews with personnel at U.S. and non-U.S. clinical laboratories and databases. Our examination of the BRCA1/2 data-sharing landscape demonstrates strong support for and robust sharing of BRCA1/2 data around the world, increasing (...) global accesses to diverse data sets. (shrink)

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

Imagine this scenario: a bank customer walks up to an ATM to withdraw cash from her account. While entering her PIN, she accidentally presses the '3' key at the same time as the 'Clear' key. Instantly $100 comes out of the cash dispenser! Curious, she checks the receipt and seeing that the money did not from her account, she tries the same operation. Again, $100 comes out of the cash dispenser. At this point she has two options, A: she can (...) continue to take advantage of this obvious flaw and tell her friends, or B: she can report this problem to the bank, telling no one else. While Kantian ethics might require the latter, the issue becomes much grayer when it comes to computer software vulnerabilities. Many variables exist to cloud the ethical judgment of a software flaw's discoverer. The question becomes: is it better to report any vulnerability that could cause catastrophic problems or to make the vulnerability information public in order to simultaneously compel the software vendor to address the problem while giving the vendor's customers a chance to prepare for potential exploitation? Software companies are facing this dilemma on a regular basis. There are dozens of websites, newsgroups, and e-mail lists dedicated to the task of sharing vulnerability information, whether condoned by the software company or not. The issue increases in severity as vulnerable software becomes ubiquitous across global networks. The public release of vulnerability information is often the first drop of the monsoon that is the malicious network worm. How this information is controlled and disseminated is critical to the stable operation of millions of computer systems and networks across the globe.Modern software with network capability is fundamentally complex and can span thousands of lines of source code for one small part of the package. Without proper testing and quality assurance, many bugs and errors slip through. Software development requires these iterations of coding and bug fixing to produce stable and polished final products. Larger and more complex software gives a greater chance for a bug to remain undiscovered. Yet, since major vulnerabilities have appeared in relatively smaller projects, proper code audit and testing are critical regardless of the size of a software package or the amount of source code required to produce it. If bugs or security vulnerabilities are not discovered and fixed by the software manufacturers, it is inevitable that they will be discovered by outside researchers.This breeds the ethical conundrum of what the researchers do with the information once it has been discovered. Foundational to disclosure, regardless of the ideology, is the notion of providing useful protective information to the most appropriate audience. Many suggest that disclosure is about doing the 'greatest good' for the greatest number of people, which is an obvious adherence to the ethical principle of Utilitarianism. There are numerous parties involved in the network security process such as software vendor, security researcher, system administrator, and even malicious attacker: all whose intentions reflect on the ethical principles behind their actions. (shrink)

Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons”. We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.

Contemporary understanding of the mechanisms of disease increasingly points to examples of “genetic diseases” with an infectious component and of “infectious diseases” with a genetic component. Such blurred boundaries generate ethical, legal, and social issues and highlight historical contexts that must be examined when incorporating host genomic information into the prevention, outbreak control, and treatment of infectious diseases.

Pragmatic clinical trials offer important benefits, such as generating evidence that is suited to inform real-world health care decisions and increasing research efficiency. However, PCTs also present ethical challenges. One such challenge involves the management of information that emerges in a PCT that is unrelated to the primary research question, yet may have implications for the individual patients, clinicians, or health care systems from whom or within which research data were collected. We term these findings as?pragmatic clinical trial collateral findings,? (...) or?PCT-CFs?. In this article, we explore the ethical considerations associated with the identification, assessment, and management of PCT-CFs, and how these considerations may vary based upon the attributes of a specific PCT. Our purpose is to map the terrain of PCT-CFs to serve as a foundation for future scholarship as well as policy-making and to facilitate careful deliberation about actual cases as they occur in practice. (shrink)

BackgroundGenetics and genomics research (GGR) is increasingly being conducted around the world; yet, researchers and research oversight entities in many countries have struggled with ethical challenges. A range of ethics and regulatory issues need to be addressed through comprehensive policy frameworks that integrate with local environments. While important efforts have been made to enhance understanding and awareness of ethical dimensions of GGR in Africa, including through the H3Africa initiative, there remains a need for in-depth policy review, at a country-level, to (...) inform and stimulate local policy development and revision on the continent.MethodsTo identify and characterize existing ethics-related guidelines and laws applicable to GGR across much of Africa, we conducted a scoping review of English language policy documents identified through databases, repositories, and web searches. Thirty-six documents were included and coded using a framework that contained a range of themes across five analytical categories: (1) respect, (2) beneficence, (3) justice, (4) independent oversight, and (5) bans and prohibitions. Data analysis software (NVivo 12) was used to organize, code, and tabulate information according to document characteristics and topics. Illustrative examples of policy requirements were selected for inclusion.ResultsDocuments that met inclusion criteria spanned 20 years; published between 1996 and 2018, with the majority (58%) published after 2009. About two-thirds were denoted as “guidelines,” and slightly more than half were non-exclusive to GGR. Very few (six) country-level documents identified were specific to GGR. Requirements related to the principle of “respect” appeared most often across all documents, relative to other principles and processes. The most commonly stated ban was on reproductive cloning. Other prohibitions applied to germline editing, undue inducements in research, sample use for commercial purposes, employee mandatory DNA testing, fetal sex selection, stem cell use, eugenics, and research without public health benefits.ConclusionsEnforceable policies that are indispensable to the ethical conduct and review of GGR are either deficient or missing in many African countries. Existing international, GGR-specific ethics guidelines can be used to inform GGR policy development at a country-level, in conjunction with insight from country specific ethics committees and other local stakeholders. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Using a longitudinal case study design, we have tracked the recovery of motor function following severe traumatic brain injury (TBI) through a multimodal neuroimaging approach. In 2006, Canadian Soldier Captain (retired) Trevor Greene (TG) was attacked with an axe to the head while on tour in Afghanistan. TG continues intensive daily rehabilitation, which recently included the integration of physical therapy (PT) with neuromodulation using translingual neurostimulation (TLNS) to facilitate neuroplasticity. Recent findings with PT+TLNS demonstrated that recovery of motor function occurred (...) beyond conventional time limits, currently extending past 14-years post-injury. To investigate whether PT+TLNS similarly resulted in associated cognitive function improvements, we examined event-related potentials (ERPs) with the brain vital signs framework. In parallel with motor function improvements, brain vital signs detected significant increases in basic attention (as measured by P300 response amplitude) and cognitive processing (as measured by contextual N400 response amplitude). These objective cognitive improvements corresponded with TG’s self-reported improvements, including a noteworthy and consistent reduction in ongoing symptoms of post-traumatic stress disorder (PTSD). The findings provide valuable insight into the potential importance of non-invasive neuromodulation in cognitive rehabilitation, in addition to initial indications for physical rehabilitation. (shrink)

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

This volume offers an English translation of John of St. Thomas's Cursus theologicus I, question I, disputation 2. In this particular text, the Dominican master raises questions concerning the scientific status and nature of theology. At issue, here, are a number of factors: namely, Christianity's continual coming to terms with the "Third Entry" of Aristotelian thought into Western Christian intellectual culture - specifically the Aristotelian notion of 'science' and sacra doctrina's satisfaction of those requirements - the Thomistic-commentary tradition, and the (...) larger backdrop of the Iberian Peninsula's flourishing "Second Scholasticism." In this latter context, John of St. Thomas applies the theological principles of Thomas Aquinas to the Scholastic disputes preoccupying Thomist, Franciscan, and Jesuit theologians, such as Cajetan, Bañez, Luis de Molina, Vazquez, Suárez - to name only a few - in a tour de force of theological thinking throughout the entire period of Scholasticism. In the process - and not insignificantly - the status quaestionis of theology's scientific character is clearly framed and answered according to John's satisfaction. Key to John of St. Thomas's resolution of the question is his understanding of the continuity of the power of human reason with the super-intelligibility of divine revelation spelled out in terms of what he calls "virtual revelation." This text presented in this volume is a quintessential example of the deep and abiding harmony that flourished between faith and reason as well as grace and nature within the golden era of Baroque Scholasticism. (shrink)

In the article, the main lines of the research and educational cooperation of the linguists of the Bashkir State University and the St. Cyril and St. Methodius University of Veliko Turnovo are considered. The prospects of these contacts are determined by capabilities of joint development of the long-term research programs in comparative linguistics, sociolinguistics, cognitive linguistics, which can be implement as collective monographs, Ph.D. theses, textbooks of the Russian and the Bulgarian languages, dictionaries (including the multilingual dictionaries). A program of (...) the double diplomas in the specialized training of undergraduates ‘Applied Slavic philology (translation study)‘ as a new form of the cooperation is also considered. (shrink)

This paper is based on the concept of environmental political philosophy and from its perspective, it highlights the weaknesses and contradictions of contemporary, existing democracies. It aims to formulate an outline of the concept of environmental democracy, following the accounts of M. Bookchin, R. Morrison and H. Skolimowski, as well as international environmental law enshrined in United Nations documents and resolutions. It is based on the hypothesis that the preservation of a democratic political system in a situation of a collapsing (...) planetary system (the Anthropocene) requires improving the foundations of democratic theory with the insights of the Earth system sciences, particularly of political ecology and critical environmentalism. Through philosophical analysis, explanation and interpretation, this paper explores an environmental democracy that would, on the one hand, preserve the basic constitutional principles of current democratic constitutional regimes, and, on the other hand, reconcile them with the current state of understanding in the Earth sciences concerning the vulnerability of the planetary system. In a sense, J. Habermas’s understanding of human rights characterizes the concept of environmental democracy as a realistic utopia. The author concludes by drawing up the imperative of sustainability, which he sees as a guiding organizing principle of institutions and public policies for the climatic, demographic and economic regime of the Anthropocene. -------------------------- Received: 16/12/2022. Reviewed: 09/03/2023. Accepted: 30/03/2023. (shrink)

It is a reasonable assumption that universal properties of natural languages are not accidental. They occur either because they are underwritten by genetic code, because they assist in language processing or language learning, or due to some combination of the two. In this paper we investigate one such language universal: the suffixing preference across the world’s languages, whereby inflections tend to be added to the end of words. A corpus analysis of child‐directed speech in English found that suffixes were more (...) accurate at cuing the grammatical category of the root word than were prefixes. An artificial language experiment found that there was a learning advantage for suffixes over prefixes in terms of grammatical categorization within an artificial language. The results are consistent with an account of language universals that originate in general purpose learning mechanisms. (shrink)

The De Doctrina Christiana is one of Augustine's most important works on the classical tradition. Undertaken at the same time as the Confessions, is sheds light on the development of Augustine's thought, especially in the areas of ethics, hermeneutics, and sign-theory. What is most interesting, however, is its careful attempt to indicate precisely what elements of a classical education are valuable for a Christian, and how the precepts of Ciceronian rhetoric may be used to communicate Christian truth. An up-to-date translation (...) has long been necessary, for readers of Augustine and all who study the early church, or the classical tradition, or the history of literary criticism or Biblical interpretation. This completely new translation gives a close but stylish representation of Augustine's thought and expression. A succinct introduction and select bibliography embodies the results of recent work. (shrink)

In the World Library of Psychologists series, international experts themselves present career-long collections of what they judge to be their finest pieces - extracts from books, key articles, salient research findings, and their major theoretical and practical contributions. Jonathan St B T Evans is amongst the foremost cognitive psychologists of his generation, having been influential in spearheading developments in the psychological study of reasoning from its very beginnings in the 1970s up to the present day. This volume of self-selected papers (...) recognises Professor Evan's major contribution to the psychological study of thinking and reasoning by bringing together his most influential and important works. Early selections in the book focus upon experimental studies of reasoning - matching bias in the Wason selection task, belief bias in syllogistic reasoning, and also seminal work on the understanding of conditional statements. The later selections include Evans' work on more general forms of dual process and dual system theory, and his recent account of two minds in one brain. The volume also contains chapters which highlight Evans' contribution to the topic of human rationality, and also his influence on the development of the "new paradigm" in the psychology of reasoning. The key developments in the psychology of reasoning are paralleled by those in Evans's own intellectual history, and the book will therefore make essential reading for all researchers in the psychology of reasoning, and a wider audience of graduate and upper-level undergraduate students with an interest in reasoning and/or dual process theory. (shrink)

This paper reviews Deleuze’s theory of language in Logic of Sense, and Deleuze and Guattari’s theory of language in A Thousand Plateaus. In the ontology informed by the Stoics described in those books, human being and language do not exist separately but in a mixture of words and things. The author argues that this flattened ontology of surfaces is incommensurable with the ontology of depth used in conventional humanist qualitative methodology and recommends beginning new empirical inquiry with a concept instead (...) of with method and methodology. (shrink)

Over the past 40 years, scholars and practitioners of public relations have often cast public relations workers in the role of the public relations-person-as-corporate-conscience. This work, however, maintains that this construct is so problematic that invoking it is of negligible use in addressing ethical issues that emerge during a crisis. In fact, a complex crisis, such as the Jahi McMath “brain death” case at Children’s Hospital Oakland, demonstrates the need to abandon the PRPaCC construct to better engage affected stakeholders, including (...) “outsiders” to the organization, who often determine whether an organization is facing a crisis. Through an examination of both the concept of the PRPaCC and the McMath crisis, this work makes the case for moving beyond the PRPaCC construct in favor of a more modest role for the public relations person: facilitating widespread ethical deliberation and discussion throughout an organization, potentially helping the organization alleviate concerns that contribute to crises. (shrink)

Guillaume St-Laurent | : Le projet philosophique central de Charles Taylor se présente comme une critique de l’« image épistémologique » (epistemological picture) de la raison, critique qui se déploie au nom d’une compréhension de la rationalité humaine plus sensible à sa finitude transcendantale et historique. L’objectif du présent essai consiste à présenter une brève analyse comparative de cette image épistémologique (ou post-cartésienne) ainsi que de la perspective herméneutique que lui oppose notre auteur. En ce sens, nous comparerons tour à (...) tour six aspects déterminants de ces deux conceptions : le caractère « apodictique », « médiationnel », « désengagé », « désignatif », « dépassionné » et « procédural » de la première et le caractère « ad hominem », « immergé », « situé », « expressif », « passionné » et « substantiel » de la seconde. Nous éclairerons en outre les enjeux complexes de cette critique par quelques remarques introductives et conclusives. | : Charles Taylor’s main philosophical project presents itself as a critique of the “epistemological picture” of rationality. This critique is put forward in the name of a new understanding of reason, more sensitive to its transcendental and historical finitude. We herein propose a short comparative analysis of this epistemological (or post-cartesian) picture and Taylor’s hermeneutical perspective. To this effect, we will compare six essential aspects of these two conceptions : the “apodictic”, “mediational”, “disengaged”, “designative”, “dispassionate”, and “procedural” character of the former, and the “ad hominem”, “immerged”, “situated”, “expressive”, “passionate”, and “substantial” character of the latter. We will also try to shed light on these complex issues by some introductive and conclusive remarks. (shrink)

Guillaume St-Laurent | : Dans ses récentes méditations philosophiques, Claude Romano soutient non seulement que la phénoménologie ne devrait plus être cartésienne, mais qu’elle ne peut plus l’être, car un doute universel serait lui-même foncièrement absurde du point de vue phénoménologique. L’objectif du présent essai est de contester qu’une telle réfutation phénoménologique du cartésianisme soit possible. En ce sens, nous soutiendrons que les arguments anti-sceptiques de Romano s’avèrent insuffisants parce que le doute hyperbolique est une possibilité de pensée qui, bien (...) que spéculative, demeure à la fois intelligible et plus radicale que toute description d’essence ou « réduction eidétique ». | : In his recent philosophical contributions, French phenomenologist Claude Romano maintained not only that phenomenology should not be Cartesian, but that it cannot be Cartesian because the very idea of a universal doubt would be utterly absurd from a phenomenological perspective. Our objective is to show that such a phenomenological refutation of Cartesianism is impossible. After reviewing the two main anti-skeptical arguments propounded by Romano, we will support a simple critical thesis : the hyperbolical doubt is an irreducible possibility of thought which, although “speculative,” remains nevertheless actual and more radical than any phenomenological description. (shrink)

Thomas Williams' edition offers an Introduction well suited for use in an introductory philosophy course, as well as his own preeminent translation of the text.

Prologue 1. To begin with, the first principle from Whom all illumination descends as from the Father of Light, by Whom are given all the best and perfect gifts, the eternal Father do I call upon through His Son, our Lord Jesus Christ, that by the intercession of the most holy Virgin Mary, mother of God Himself and of our Lord, Jesus Christ, and of the blessed Francis, our father and leader, He may enlighten the eyes of our mind to (...) guide our feet into the way of that peace "which surpasses all understanding", which peace our Lord Jesus Christ has announced and given to us; which lesson our father Francis always taught, in all of whose preaching was the annunciation of peace both in the beginning and in the end, wishing for peace in every greeting, yearning for ecstatic peace in every moment of contemplation, as a citizen of that Jerusalem of which that man of peace said, with those that hated peace he was peaceable, "Pray ye for the things that are for the peace of Jerusalem". For he knew that the throne of Solomon was nowise save in peace, since it is written, "His place is in peace and His abode in Sion". 2. Since, then, following the example of the most blessed father Francis, I breathlessly sought this peace, I, a sinner, who have succeeded to the place of that most blessed father after his death, the seventh Minister General of the brothers, though in all ways unworthy--it happened that by the divine will in the thirty-third year after the death of that blessed man I ascended to Mount Alverna as to a quiet place, with the desire of seeking spiritual peace; and staying there, while I meditated on the ascent of the mind to God, amongst other things there occurred that miracle which happened in the same place to the blessed Francis himself, the vision namely of the winged Seraph in the likeness of the Crucified. While looking upon this vision, I immediately saw that it signified the suspension of our father himself in contemplation and the way by which he came to it. 3. For by those six wings are rightly to be understood the six stages of illumination by which the soul, as if by steps or progressive movements, was disposed to pass into peace by ecstatic elevations of Christian wisdom. The way, however, is only through the most burning love of the Crucified, Who so transformed Paul, "caught up into the third heaven", into Christ, that he said, "With Christ I am nailed to the cross, yet I live, now not I, but Christ liveth in me" ; who therefore so absorbed the mind of Francis that his soul was manifest in his flesh and he bore the most holy stigmata of the Passion in his body for two years before his death. Therefore the symbol of the six-winged Seraph signifies the six stages of illumination, which begin with God's creatures and lead up to God, to Whom no one can enter properly save through the Crucified. For he who does not enter by the door but otherwise, he is a thief and a robber. But if anyone does enter by this door, he shall go in and go out and shall find pastures. Because of this John says in his Apocalypse, "Blessed are they that wash their robes in the blood of the Lamb, that they may have a right to the Tree of Life and may enter in by the gates into the City"; as if he were to say that one cannot enter into the heavenly Jerusalem through contemplation unless one enter through the blood of the Lamb as through a gate. (shrink)