Many servicemen and women began suffering from a variety of symptoms and illnesses soon after the 1991 Gulf War. Some veterans believe that their illnesses are related to toxic exposures during their service, though scientific research has been largely unable to demonstrate any link. Disputes over the definition, etiology, and treatment of Gulf War-related illnesses continue. The authors examine the roles of science, policy, and veteran activism in developing an understanding of GWRIs. They argue that the government’s stress-based explanation of (...) GWRIs and its insistence on a scientific link between service in the gulf and veteran illnesses forced veterans to shift from pleas for care, treatment, and compensation on moral grounds to engagement in the scientific process and debates over the interpretation of scientific findings. The authors compare the experiences of veterans to those of breast cancer activists to explain the stages of illness contestation in general. (shrink)

There are challenges to the dominant research paradigm in breast cancer science. In the United States, science and social activism create paradigmatic shifts. Using interviews, ethnographic observations, and an extensive review of the literature, we create a three-dimensional model to situate changes in scientific controversy concerning environmental causes of breast cancer. We identify three paradigm challenges posed by activists and some scientists: to move debates about causation upstream to address causes; to shift emphasis from individual to modifiable societal-level factors beyond (...) an individual’s control; and to allow direct lay involvement in research, which may raise new questions and change how questions are approached, the methods used, and the standards of proof. We use our model to examine controversies about doing scientific research, interpreting scientific results, and acting on science. Ultimately, we aim to understand what impedes construction of new methodologies and knowledge about environmental factors in human disease. (shrink)

Background: Ethics support services are growing in Europe to help doctors in dealing with ethical difficulties. Currently, insufficient attention has been focused on the experiences of doctors who have faced ethical difficulties in these countries to provide an evidence base for the development of these services.Methods: A survey instrument was adapted to explore the types of ethical dilemma faced by European doctors, how they ranked the difficulty of these dilemmas, their satisfaction with the resolution of a recent ethically difficult case (...) and the types of help they would consider useful. The questionnaire was translated and given to general internists in Norway, Switzerland, Italy and the UK.Results: Survey respondents ranged in age from 28 to 82 years, and averaged 25 years in practice. Only a minority reported having access to ethics consultation in individual cases. The ethical difficulties most often reported as being encountered were uncertain or impaired decision-making capacity , disagreement among caregivers and limitation of treatment at the end of life . The frequency of most ethical difficulties varied among countries, as did the type of issue considered most difficult. The types of help most often identified as potentially useful were professional reassurance about the decision being correct , someone capable of providing specific advice , help in weighing outcomes and clarification of the issues . Few of the types of help expected to be useful varied among countries.Conclusion: Cultural differences may indeed influence how doctors perceive ethical difficulties. The type of help needed, however, did not vary markedly. The general structure of ethics support services would not have to be radically altered to suit cultural variations among the surveyed countries. (shrink)

Chipman, Meagher and Barwise (2024) propose a framework to interrogate public health responsibilities for populations with limited proficiency in the predominant language. We agree with many of the...

The field of computational law has increasingly moved into the focus of the scientific community, with recent research analysing its issues and risks. In this article, we seek to draw a structured and comprehensive list of societal issues that the deployment of automatically processable regulation could entail. We do this by systematically exploring attributes of the law that are being challenged through its encoding and by taking stock of what issues current projects in this field raise. This article adds to (...) the current literature not only by providing a needed framework to structure arising issues of computational law but also by bridging the gap between theoretical literature and practical implementation. Key findings of this article are: (1) The primary benefit (efficiency vs. accessibility) sought after when encoding law matters with respect to the issues such an endeavor triggers; (2) Specific characteristics of a project—project type, degree of mediation by computers, and potential for divergence of interests—each impact the overall number of societal issues arising from the implementation of automatically processable regulation. (shrink)

Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...) important to understand what the concerns are and how they might be mitigated. This study reports outcomes of a deliberative method of citizen engagement in Singapore that asked whether sharing precision medicine data with private industry would be permissible, and if so, under what circumstances. Findings from this citizens’ jury suggest sharing with industry would be permissible under certain conditions that are set out in nine recommendations. Implications of the recommendations and their underlying assumptions for policy decision makers are discussed. This study aligns with prior international studies which found conditional acceptance for data sharing with private industry, a public benefit requirement, specific reluctance to share with insurance companies and an emphasis on accountability and transparency to demonstrate trustworthiness. However, our results differ from prior studies in that opt-in consent did not dominate the deliberations as jurors were able to set it aside as an assumed prerequisite for participation in a precision medicine programme. (shrink)

Ethik-Komitees gehören zum festen Bestandteil des Ethikmanagements und der Organisationsethik in klinischen Einrichtungen des Gesundheitswesens. Entsprechende Ethikstrukturen und die damit verbundenen Angebote stoßen hinsichtlich ihrer Wirksamkeit allerdings an ihre Grenzen. Ihre Arbeitsweisen sind häufig reaktiv und eine Verankerung in den entsprechenden Organisationsebenen fehlt. Ausgehend von diesen Limitationen der klinischen Ethikberatung hat sich die multiprofessionelle „Arbeitsgruppe Ethik“ am Universitätsklinikum Tübingen um die Konzeption und Implementierung eines neuen Ansatzes zur nachhaltigen Integration von ethischen Reflexions- und Entscheidungsprozessen auf den Stationen des UKT bemüht. (...) Mit dem Tübinger Modell der Ethikbeauftragten der Station verfolgt sie ein Pilotprojekt, das speziell geschulte Pflegekräfte aus allen Stationen des UKT als AnsprechpartnerInnen für ethische Fragen einsetzt. Damit stellen die Ethikbeauftragten eine Erweiterung zu etablierten Strukturen der Ethikberatung dar und ergänzen vorhandene Top-Down-Strategien. Der vorliegende Beitrag stellt die Zielsetzungen des Tübinger Modells dar und schildert erste Erfahrungen in der Umsetzung. Neben der Einbettung in organisationale Strukturen der Ethikberatung werden die stationsinternen und stationsübergreifenden Aufgaben der Ethikbeauftragten dargestellt. Zudem wird das Qualifikationsprogramm für Ethikbeauftragte sowie ein Train-the-Trainer-Konzept vorgestellt, welche eine vertiefende Entwicklung von pflege- und medizinethischer Kompetenzen unterstützen und Sicherheit in den stationsbezogenen Reflexions- und Entscheidungsprozessen vermitteln. (shrink)

Department of Medical Education, Flinders University of South Australia, GPO Box 2100, Adelaide SA 5001. Tel. : +61-8-7225-1111; Fax: +61-8-8204-5675; Email: lee0359{at}flinders.edu.au ' + u + '@ ' + d + ' '/ /- ->.This paper analyses the role of communication strategies in pandemic influenza planning. Our central concern is with the extent to which nations are using communication to address issues of social justice. Issues associated with disadvantage and vulnerability to infection in the event of an influenza pandemic raise (...) distinct questions about how well less well off groups will be protected. The potential for a public health emergency of this type to exacerbate existing inequalities, making those in less well off positions worse off, makes social justice an important consideration for pandemic planners. National PI plans offer insights into the ways that nations may use communication to address issues of disadvantage, thereby providing a way of examining how communication strategies are presented and their potential to mitigate inequities. Our research reviewed 12 national PI plans and assessed the extent to which nations are using communication to assist and limit possible harms to less well off groups. We outline in this paper some important issues and considerations associated with social justice and flu planning, in particular if and how plans are addressing inequalities. CiteULike Connotea Del.icio.us What's this? (shrink)

Introduction No consent for health and medical research is appropriate when the criteria for a waiver of consent are met, yet some ethics committees and data custodians still require informed consent. Methods A single-blind parallel-group randomised controlled trial: 1129 families of children born at a South Australian hospital were sent information explaining data linkage of childhood immunisation and hospital records for vaccine safety surveillance with 4 weeks to opt in or opt out by reply form, telephone or email. A subsequent (...) telephone interview gauged the intent of 1026 parents (91%) in relation to their actions and the sociodemographic differences between participants and non-participants in each arm. Results The participation rate was 21% (n=120/564) in the opt-in arm and 96% (n=540/565) in the opt-out arm (χ2 (1 df) = 567.7, p<0.001). Participants in the opt-in arm were more likely than non-participants to be older, married/de facto, university educated and of higher socioeconomic status. Participants in the opt-out arm were similar to non-participants, except men were more likely to opt out. Substantial proportions did not receive, understand or properly consider study invitations, and opting in or opting out behaviour was often at odds with parents' stated underlying intentions. Conclusions The opt-in approach resulted in low participation and a biased sample that would render any subsequent data linkage unfeasible, while the opt-out approach achieved high participation and a representative sample. The waiver of consent afforded under current privacy regulations for data linkage studies meeting all appropriate criteria should be granted by ethics committees, and supported by data custodians. Trial registration number Australian New Zealand Clinical Trials Registry ACTRN12610000332022. (shrink)

An important challenge when creating automatically processable laws concerns open-textured terms. The ability to measure open-texture can assist in determining the feasibility of encoding regulation and where additional legal information is required to properly assess a legal issue or dispute. In this article, we propose a novel conceptualisation of open-texture with the aim of determining the extent of open-textured terms in legal documents. We conceptualise open-texture as a lever whose state is impacted by three types of forces: internal forces (the (...) words within the text themselves), external forces (the resources brought to challenge the definition of words), and lateral forces (the merit of such challenges). We tested part of this conceptualisation with 26 participants by investigating agreement in paired annotators. Five key findings emerged. First, agreement on which words are open-texture within a legal text is possible and statistically significant. Second, agreement is even high at an average inter-rater reliability of 0.7 (Cohen’s kappa). Third, when there is agreement on the words, agreement on the Open-Texture Value is high. Fourth, there is a dependence between the Open-Texture Value and reasons invoked behind open-texture. Fifth, involving only four annotators can yield similar results compared to involving twenty more when it comes to only flagging clauses containing open-texture. We conclude the article by discussing limitations of our experiment and which remaining questions in real life cases are still outstanding. (shrink)

ABSTRACT:We examine supervisor-subordinate agreement regarding perceptions of the supervisor’s ethical leadership and its relationship to organizational deviance. We find that, on average, supervisors rate themselves more favorably on ethical leadership compared to how followers rate them. In addition, polynomial regression results reveal that unit-level organizational deviance is higher when there is agreement about lower levels of ethical leadership, and disagreement when supervisors rate themselves higher on ethical leadership than subordinates’ ratings of the supervisors. Finally, drawing on social influence theories, we (...) look at antecedents of agreement and find that supervisors’ beliefs about themselves and others are associated with self-other agreement on ethical leadership. (shrink)

Clinical mental health researchers may understandably struggle with how to incorporate biological assessments in clinical research. The options are numerous and are described in a vast and complex body of literature. Here we provide guidelines to assist mental health researchers seeking to include biological measures in their studies. Apart from a focus on behavioral outcomes as measured via interviews or questionnaires, we advocate for a focus on biological pathways in clinical trials and epidemiological studies that may help clarify pathophysiology and (...) mechanisms of action, delineate biological subgroups of participants, mediate treatment effects, and inform personalized treatment strategies. With this paper we aim to bridge the gap between clinical and biological mental health research by (1) discussing the clinical relevance, measurement reliability, and feasibility of relevant peripheral biomarkers; (2) addressing five types of biological tissues, namely blood, saliva, urine, stool and hair; and (3) providing information on how to control sources of measurement variability. (shrink)

GoalThis paper presents an immersive Virtual Reality system to analyze and train Executive Functions of soccer players. EFs are important cognitive functions for athletes. They are a relevant quality that distinguishes amateurs from professionals.MethodThe system is based on immersive technology, hence, the user interacts naturally and experiences a training session in a virtual world. The proposed system has a modular design supporting the extension of various so-called game modes. Game modes combine selected game mechanics with specific simulation content to target (...) particular training aspects. The system architecture decouples selection/parameterization and analysis of training sessions via a coaching app from an Unity3D-based VR simulation core. Monitoring of user performance and progress is recorded by a database that sends the necessary feedback to the coaching app for analysis.ResultsThe system is tested for VR-critical performance criteria to reveal the usefulness of a new interaction paradigm in the cognitive training and analysis of EFs. Subjective ratings for overall usability show that the design as VR application enhances the user experience compared to a traditional desktop app; whereas the new, unfamiliar interaction paradigm does not negatively impact the effort for using the application.ConclusionThe system can provide immersive training of EF in a fully virtual environment, eliminating potential distraction. It further provides an easy-to-use analyzes tool to compare user but also an automatic, adaptive training mode. (shrink)

Name der Zeitschrift: Frühmittelalterliche Studien Jahrgang: 36 Heft: 2 Seiten: 269-285.

Technology has expanded genomic research and the complexity of extracted gene-related information. Health-related genomic incidental findings pose new dilemmas for nurse researchers regarding the ethical application of disclosure to participants. Consequently, informed consent specific to incidental findings is recommended. Critical Social Theory is used as a guide in recognition of the changing meaning of informed consent and to serve as a framework to inform nursing of the ethical application of disclosure consent in genomic nursing research practices.

At the forefront of international concerns about global legislation and regulation, a host of noted environmentalists and business ethicists examine ethical issues in consumption from the points of view of environmental sustainability, economic development, and free enterprise.

In cultures with left-right-script, agentic behavior is mentally represented as following a left-to-right trajectory, an effect referred to as the Spatial Agency Bias. In this research, we investigated whether spatial representations of activities are universal across activities by analyzing the opposite concepts of “attack” and “defense”. Both behaviors involve similar actions but may differ in perceived agency. Moreover “defense” is necessarily always a response to an attack and may therefore be represented by a trajectory in the opposite direction. Two studies (...) found the classic SAB for activities representing attacking but a reduction and reversal for activities involving defense. Although the spatial representation of defense on the right was much weaker and less unequivocal than that of attack on the left, the results suggest that the spatial representations of defense and attack are located in different positions. Apparently not all actors and all activities are spatially represented on the left with a left-to-right trajectory but position and direction depend on the perceived agency. Directions for future research and applications of our findings are discussed. (shrink)

Risk prediction in emergency medicine (EM) holds unique challenges due to issues surrounding urgency, blurry research-practise distinctions, and the high-pressure environment in emergency departments (ED). Artificial intelligence (AI) risk prediction tools have been developed with the aim of streamlining triaging processes and mitigating perennial issues affecting EDs globally, such as overcrowding and delays. The implementation of these tools is complicated by the potential risks associated with over-triage and under-triage, untraceable false positives, as well as the potential for the biases of (...) healthcare professionals toward technology leading to the incorrect usage of such tools. This paper explores risk surrounding these issues in an analysis of a case study involving a machine learning triage tool called the Score for Emergency Risk Prediction (SERP) in Singapore. This tool is used for estimating mortality risk in presentation at the ED. After two successful retrospective studies demonstrating SERP’s strong predictive accuracy, researchers decided that the pre-implementation randomised controlled trial (RCT) would not be feasible due to how the tool interacts with clinical judgement, complicating the blinded arm of the trial. This led them to consider other methods of testing SERP’s real-world capabilities, such as ongoing-evaluation type studies. We discuss the outcomes of a risk–benefit analysis to argue that the proposed implementation strategy is ethically appropriate and aligns with improvement-focused and systemic approaches to implementation, especially the learning health systems framework (LHS) to ensure safety, efficacy, and ongoing learning. (shrink)

This article describes the UniversAAL platform, an open platform intended to facilitate the development, distribution, and deployment of technological solutions for Ambient assisted living. The platform is intended to benefit end users, authorities with responsibility for AAL, and organizations involved in the development and deployment of AAL services. It consists of an extensive set of resources aimed at these different groups. The resources are classified into three main groups: runtime support, development support, and community support. The article presents the benefits (...) that can be expected from the widespread adoption of the platform. The article also describes progress on prototype implementations of some of the software resources, and the results of initial evaluations of the platform. The work is partially based on results from earlier European Union-funded research projects in the area. (shrink)

This book addresses the problem of how to make democratically-legitimate public policy on issues of contentious bioethical debate. It focuses on ethical contests about research and their legitimate resolution, while addressing questions of political legitimacy. How should states make public policy on issues where there is ethical disagreement, not only about appropriate outcomes, but even what values are at stake? What constitutes justified, democratic policy in such conflicted domains? Case studies from Canada and Australia demonstrate that two countries sharing historical (...) and institutional characteristics can reach different policy responses. This book is of interest to policymakers, bioethicists, and philosophers, and will deepen our understanding of the interactions between large-scale socio-political forces and detailed policy problems in bioethics. (shrink)

ZusammenfassungDie Schaffung optimaler Rahmenbedingungen für eine möglichst individualisierte Athletenentwicklung stellt Leistungssportorganisationen vor vielschichtige Herausforderungen. Im vorliegenden Beitrag begründen wir das Design eines Organisationsentwicklungsprogramms zur Förderung der individualisierten Athletenentwicklung, welches derzeit im Netzwerk aus dem Olympiastützpunkt und Bundesstützpunkten der Metropolregion Rhein-Neckar implementiert, evaluiert und optimiert wird. Im Rahmen theoretischer Überlegungen wird zunächst gezeigt, dass Athletenentwicklung ein komplexer biopsychosozialer Prozess ist, der neben der Förderung sportmotorischer Höchstleistung auch die nachhaltige Gesunderhaltung und konstruktive Bewältigung alltäglicher Lebensaufgaben beinhaltet. Vor diesem Hintergrund konzipieren wir individualisierte (...) Athletenentwicklung als Managementaufgabe in Stützpunktnetzwerken des Leistungssports, die einen angemessenen Umgang mit Heterogenität, Interdisziplinarität und Flexibilität erfordert. Zudem wird die praktische Relevanz von partizipativen Ansätzen aus dem Bereich der Organisationsentwicklung verdeutlicht. Auf dieser Basis stellen wir die Konzeption der PRIO-Intervention vor, die im Kern aus drei vernetzten Phasen und einem prozessbegleitenden multi-stakeholder Koordinierungsteam besteht. Dieser Ansatz soll insbesondere den Athletinnen und Athleten die Möglichkeit geben, sich aktiv an der Entwicklung von Lösungen zur Optimierung ihres Stützpunktnetzwerks zu beteiligen. Durch die Evaluierung des Implementierungsprozesses lassen sich zudem neue Erkenntnisse über die Möglichkeiten und Grenzen partizipationsbasierter Interventionen der Organisationsentwicklung im Leistungssport gewinnen. (shrink)

Using the flexibility of recently developed methods for causal discovery based on Boolean satisfiability solvers, we encode a variety of assumptions that weaken the Faithfulness assumption. The encoding results in a number of SAT-based algorithms whose asymptotic correctness relies on weaker conditions than are standardly assumed. This implementation of a whole set of assumptions in the same platform enables us to systematically explore the effect of weakening the Faithfulness assumption on causal discovery. An important effect, suggested by simulation results, is (...) that adopting weaker assumptions greatly alleviates the problem of conflicting constraints and substantially shortens solving time. As a result, SAT-based causal discovery is potentially more scalable under weaker assumptions. (shrink)

This paper offers a new answer to an old question. Others have argued that exploitation is wrong because it is coercive, or degrading, or fails to protect the vulnerable. But these answers only work for certain cases; counterexamples are easily found. In this paper I identify a different answer to the question by placing exploitation within the larger family of wrongs to which it belongs. Exploitation is one species of wrongful gain, and exploiters always gain at the expense of others (...) by inflicting relative losses on disadvantaged parties. They do harm to their victims, even when their interactions are mutually advantageous, by failing to benefit the disadvantaged party as fairness requires. This failure is the essential wrong in every case of wrongful exploitation. At the end of the paper I assess how wrong this failure is as a way to gain at another's expense. (shrink)

Next SectionWhilst there has been considerable debate about the fit between moral theory and moral reasoning in everyday life, the way in which moral problems are defined has rarely been questioned. This paper presents a qualitative analysis of interviews conducted with 15 general practitioners (GPs) in South Australia to argue that the way in which the bioethics literature defines an ethical dilemma captures only some of the range of lay views about the nature of ethical problems. The bioethics literature has (...) defined ethical dilemmas in terms of conflict and choice between values, beliefs and options for action. While some of the views of some of the GPs in this study about the nature of their ethical dilemmas certainly accorded with this definition, other explanations of the ethical nature of their problems revolved around the publicity associated with the issues they were discussing, concern about their relationships with patients, and anxiety about threats to their integrity and reputation. The variety of views about what makes a problem a moral problem indicates that the moral domain is perhaps wider and richer than mainstream bioethics would generally allow. (shrink)

This book proposes a bold idea. Living beings are distinguishing distinctions. Single cells and multicellular organisms maintain themselves distinct by drawing distinctions. This is what organisms are and what they do. From this starting point, key issues examined range across ontology, epistemology, phenomenology, logic, and ethics. Topics discussed include the origin of life, the nature and purpose of biology, the relation between life and logic, the nature and limits of formal logic, the nature of subjects, the subject-object relation, subject-subject relationships (...) and the deep roots of ethics. The book provides a radical new foundation to think about philosophy and biology and appeals to researchers and students in these fields. It powerfully debunks mechanical thinking about living beings and shows the vast reservoir of insights into aliveness available in the arts and humanities. (shrink)