The development of gene expression profiling and next-generation sequencing technologies have steered oncogenomics to the forefront of precision medicine. This created a need for harmonious cooperation between clinicians and researchers to increase access to precision oncology, despite multiple implementation challenges being encountered. The aim is to apply personalised treatment strategies early in cancer management, targeting tumour subtypes and actionable gene variants within the individual’s broader clinical risk profile and wellbeing. A knowledge-generating database linked to the South African Medical Research Council’s (...) Genomic Centre has been created for the application of personalised medicine, using an integrated service and research approach. Insights gained from patient experiences related to tumour heterogeneity, access to targeted therapies and incidental findings of pathogenic germline variants in tumour DNA, provided practice-changing evidence for the implementation of a cost-minimisation pathology-supported genetic testing strategy. Integrating clinical care with genomic research through data sharing advances personalised medicine and maximises precision oncology benefits. (shrink)

Background Inadequate knowledge among health care providers (HCPs) and parents of affected children limits the understanding and utility of secondary genetic findings (SFs) in under-represented populations in genomics research. SFs arise from deep DNA sequencing done for research or diagnostic purposes and may burden patients and their families despite their potential health importance. This study aims to evaluate the perspective of both groups regarding SFs and their choices in the return of results from genetic testing in the context of orofacial (...) clefts.Methods Using an online survey, we evaluated the experiences of 252 HCPs and 197 parents across participating cleft clinics in Ghana and Nigeria toward the return of SFs across several domains.Results Only 1.6% of the HCPs felt they had an expert understanding of when and how to incorporate genomic medicine into practice, while 50.0% agreed that all SFs should be returned to patients. About 95.4% of parents were willing to receive all the information from genetic testing (including SFs), while the majority cited physicians as their primary information source (64%).Conclusions Overall, parents and providers were aware that genetic testing could help in the clinical management of diseases. However, they cited a lack of knowledge about genomic medicine, uncertain clinical utility, and lack of available learning resources as barriers. The knowledge gained from this study will assist with developing guidelines and policies to guide providers on the return of SFs in sub-Saharan Africa and across the continent. (shrink)

We present PhrasIS, a benchmark dataset composed of natural occurring Phrase pairs with Inference and Similarity annotations for the evaluation of semantic representations. The described dataset fills the gap between word and sentence-level datasets, allowing to evaluate compositional models at a finer granularity than sentences. Contrary to other datasets, the phrase pairs are extracted from naturally occurring text in image captions and news headlines. All the text fragments have been annotated by experts following a rigorous process also described in the (...) manuscript achieving high inter annotator agreement. In this work we analyse the dataset, showing the relation between inference labels and similarity scores. With 10K phrase pairs split in development and test, the dataset is an excellent benchmark for testing meaning representation systems. (shrink)

In 1970 Van Rensselaer Potter was the first to use the term "bioethics" in a publication to advocate the development of a new discipline to address the basic problems of human flourishing. This article analyzes Potter's notion of bioethics in order to understand its origins, sources, and substance. In early publications, Potter conceptualized bioethics as a bridge: between present and future, nature and culture, science and values, and finally between humankind and nature. In later publications, disappointed by a predominant focus (...) on individual and medical issues, and with a wish to underscore the need for a broader perspective, Potter introduced the new term "global bioethics," meant to transcend ethics specialties and integrate them into a new interdisciplinary endeavor to address global problems. A growing interest in global bioethics today means that Potter's original insights are more timely than ever. (shrink)

This paper explores the role of ‘community’ in the context of global bioethics. With the present globalization of bioethics, new and interesting references are made to this concept. Some are familiar, for example, community consent. This article argues that the principle of informed consent is too individual-oriented and that in other cultures, consent can be community-based. Other references to ‘community’ are related to the novel principle of benefit sharing in the context of bioprospecting. The application of this principle necessarily requires (...) the identification and construction of communities. On the global level there are also new uses of the concept of community as ‘global community.’ Three uses are distinguished: (1) a diachronic use, including past, present, and future generations, (2) a synchronic ecological use, including nonhuman species, and (3) a synchronic planetary use, including all human beings worldwide. Although there is a tension between the communitarian perspective and the idea of global community, this article argues that the third use can broaden communitarianism. The current development towards cosmopolitanism is creating a new global community that represents humanity as a whole, enabling identification of world citizens and evoking a sense of global solidarity and responsibility. The emergence of global bioethics today demonstrates this development. (shrink)

BackgroundPreprint usage is growing rapidly in the life sciences; however, questions remain on the relative quality of preprints when compared to published articles. An objective dimension of quality that is readily measurable is completeness of reporting, as transparency can improve the reader’s ability to independently interpret data and reproduce findings.MethodsIn this observational study, we initially compared independent samples of articles published in bioRxiv and in PubMed-indexed journals in 2016 using a quality of reporting questionnaire. After that, we performed paired comparisons (...) between preprints from bioRxiv to their own peer-reviewed versions in journals.ResultsPeer-reviewed articles had, on average, higher quality of reporting than preprints, although the difference was small, with absolute differences of 5.0% [95% CI 1.4, 8.6] and 4.7% [95% CI 2.4, 7.0] of reported items in the independent samples and paired sample comparison, respectively. There were larger differences favoring peer-reviewed articles in subjective ratings of how clearly titles and abstracts presented the main findings and how easy it was to locate relevant reporting information. Changes in reporting from preprints to peer-reviewed versions did not correlate with the impact factor of the publication venue or with the time lag from bioRxiv to journal publication.ConclusionsOur results suggest that, on average, publication in a peer-reviewed journal is associated with improvement in quality of reporting. They also show that quality of reporting in preprints in the life sciences is within a similar range as that of peer-reviewed articles, albeit slightly lower on average, supporting the idea that preprints should be considered valid scientific contributions. (shrink)

Current bioethical debate is bizarre because it concentrates on exceptional cases while it does not pay attention to underlying value perspectives that determine the agenda of the debate.

The concept of ‘geneticization’ has been introduced in the scholarly literature to describe the various interlocking and imperceptible mechanisms of interaction between medicine, genetics, society and culture. It is argued that Western culture currently is deeply involved in a process of geneticization. This process implies a redefinition of individuals in terms of DNA codes, a new language to describe and interpret human life and behavior in a genomic vocabulary of codes, blueprints, traits, dispositions, genetic mapping, and a gentechnological approach to (...) disease, health and the body. This article analyses the thesis of ‘geneticization’. Explaining the implications of the thesis, and discussing the critical refutations, it is argued that ‘geneticization’ primarily is a heuristic tool that can help to re-focus the moral debate on the implications of new genetic knowledge towards interpersonal relations, the power of medicine, the cultural context and social constraints, rather than emphasizing issues as personal autonomy and individual rights. (shrink)

The current model of technology assessment treats ethics itself as just another problem‐solving technology. Ethics should resist this model to play a more critical role in technology assessment by better understanding the complex relationship between society, medicine, and technology—and by recasting how problems are defined.

The current model of technology assessment treats ethics itself as just another problem‐solving technology. Ethics should resist this model to play a more critical role in technology assessment by better understanding the complex relationship between society, medicine, and technology—and by recasting how problems are defined.

This book critically analyses experiences with bioethics education in various countries across the world and identifies common challenges and interests. It presents ethics teaching experiences in nine different countries and the basic question of the goals of bioethics education. It addresses bioethics education in resource-poor countries, as the conditions and facilities are widely different, and set limits and provide challenges to bioethics educators. Further, the question of how bioethics education can be improved is explored by the contributors. Despite the volume (...) of journal publications agreement on bioethics education is rather limited. There are only few examples of core curricula, demonstrating consensus on the contents, goals, methods and assessment of teaching programs. We need ask: How can agreement on the best modalities of bioethics education be promoted? (shrink)

UNESCO is an intergovernmental organization with 193 Member States. It is concerned with a broad range of issues regarding education, science and culture. It is the only UN organisation with a mandate in science. Since 1993 it is addressing ethics of science and technology, with special emphasis on bioethics. One major objective of the ethics programme is the development of international normative standards. This is particularly important since many Member States only have a limited infrastructure in bioethics, lacking expertise, educational (...) programs, bioethics committees and legal frameworks. UNESCO has recently adopted the Universal Declaration on Bioethics and Human Rights. The focus of current activities is now on implementation of this Declaration. Three activities are discussed that aim at improving and reinforcing the ethics infrastructure in relation to science and technology: the Global Ethics Observatory, the Ethics Education Programme and the Assisting Bioethics Committees project. (shrink)

IntroductionBisphenol A is highly debated and studied in relation to a variety of health outcomes. This large variation in the literature makes BPA a topic that is prone to selective use of literature, in order to underpin one’s own findings and opinion. Over time, selective use of literature, by means of citations, can lead to a skewed knowledge development and a biased scientific consensus. In this study, we assess which factors drive citation and whether this results in the overrepresentation of (...) harmful health effects of BPA.MethodsA citation network analysis was performed to test various determinants of citation. A systematic search identified all relevant publications on the human health effect of BPA. Data were extracted on potential determinants of selective citation, such as study outcome, study design, sample size, journal impact factor, authority of the author, self-citation, and funding source. We applied random effect logistic regression to assess whether these determinants influence the likelihood of citation.ResultsOne hundred sixty-nine publications on BPA were identified, with 12,432 potential citation pathways of which 808 citations occurred. The network consisted of 63 cross-sectional studies, 34 cohort studies, 29 case-control studies, 35 narrative reviews, and 8 systematic reviews. Positive studies have a 1.5 times greater chance of being cited compared to negative studies. Additionally, the authority of the author and self-citation are consistently found to be positively associated with the likelihood of being cited. Overall, the network seems to be highly influenced by two highly cited publications, whereas 60 out of 169 publications received no citations.ConclusionIn the literature on BPA, citation is mostly driven by positive study outcome and author-related factors, such as high authority within the network. Interpreting the impact of these factors and the big influence of a few highly cited publications, it can be questioned to which extent the knowledge development in human literature on BPA is actually evidence-based. (shrink)

The current COVID-19 pandemic has reactivated ancient metaphors but also initiated a new vocabulary: social distancing, lockdown, self-isolation, and sheltering in place. Terminology is not ethically neutral but reflects prevailing value systems. I will argue that there are two metaphorical vocabularies at work: an authoritarian one and a liberal one. Missing is an ecological vocabulary. It has been known for a long time that emerging infectious diseases are associated with the destruction of functioning ecosystems and biodiversity. Ebola and avian influenza (...) viruses have been significant warnings. Obviously, this pandemic will not be the last one. As the planet is our common home, the major metaphor to explore is sheltering at this home. (shrink)

Global bioethics and the environment -- Biodiversity -- Health -- Disease -- Drugs -- Food -- Water -- Global bioethics in practice.

Continuing the dialogue: postcolonial feminist scholarship and Bourdieu — discourses of culture and points of connection Postcolonial feminist theories provide the analytic tools to address issues of structural inequities in groups that historically have been socially and economically disadvantaged. In this paper we question what value might be added to postcolonial feminist theories on culture by drawing on Bourdieu. Are there points of connection? Like postcolonial feminists, he puts forward a position that aims to unmask oppressive structures. We argue that, (...) while there are points of connection, there are also epistemologic and methodologic differences between postcolonial feminist perspectives and Bourdieu's work. Nonetheless, engagement with different theoretical perspectives carries the promise of new insights — new ways of ‘seeing’ and ‘understanding’ that might enhance a praxis‐oriented theoretical perspective in healthcare delivery. (shrink)

Abstract: Retama raetam (RR) is a traditional medicinal plant belongs to fabaceae family which grows in North Africa and East Mediterranean region. Locally, RR is used in several diseases including diabetes mellitus and hypertension. Thus, this study aims to investigate certain behavioral and central effects of methanolic extract of RR seeds in experimental animals (male Albino adult mice of 20 – 35 gm). Three exploratory behavioral models are used in this study, open field, elevated plus maze and light-dark box models, (...) in addition, picrotoxin induced seizure model in mice. In elevated plus-maze test of anxiety, a dose of 25 mg/kg of RR induced a significant increase in number of open arms entries and time spent on open arms of the maze compared to the control. In light-dark model, time spent on light area and number of light-dark transitions are significantly increased after treatment with 25 mg/kg RR extract of seeds. Open field model also revealed a significant increase in general motor activity of the mouse after 25 mg/kg of RR. On the other hand, a dose of 50 mg/kg of RR significantly induced a profound central and peripheral analgesic responses. In summary, this study concludes that RR seeds have a profound anxiolytic-like effect and analgesic response with delay in latency time of seizure induced by picrotoxin in mice. (shrink)

The growth of knowledge and its effects on the practice of medicine have been issues of philosophical and ethical interest for several decades and will remain so for many years to come. The outline of the present volume was conceived nearly three years ago. In 1987, a conference on this theme was held in Maastricht, the Netherlands, on the occasion of the founding of the European Society for Philosophy of Medicine and Health Care (ESPMH). Most of the chapters of this (...) book are derived from papers presented at that meeting, and for the purpose of editing the book Stuart Spicker, Ph. D., joined two founding members of ESPMH, Henk ten Have and Gerrit Kimsma. The three of them successfully brought together a number of interesting contribu tions to the theme, and ESPMH is grateful and proud to have initiated the production of this volume. The Society intends that annual meetings be held in different European countries on a rotating basis and to publish volumes related to these meetings whenever feasible. In 1988, the second conference was held in Aarhus, Denmark on "Values in Medical Decision Making and Resource Allocation in Health Care". In 1989, a meeting was held in Czestochowa, Poland, on "European Traditions in Philosophy of Medicine. From Brentano to Bieganski". It is hoped that these conferences and the books to be derived from them, will initiate a new European tradition, lasting well into the 21 st century! P. J. (shrink)

The contemporary philosophy of medicine may be characterized as a continuous struggle with the Cartesian heritage, in order to reach a more satisfying image of man. This paper outlines the influence of Cartesian dualism on the foundations of medicine.The notion of a real distinction between the mental and physical, particularly the mechanistic conception of the human body, made possible the development of the natural sciences as well as scientific medicine, not hampered any longer by the risk of colliding with religion (...) or Church. (shrink)

The concept of ‘geneticization’ has been introduced in the scholarly literature to describe the various interlocking and imperceptible mechanisms of interaction between medicine, genetics, society and culture. It is argued that Western culture currently is deeply involved in a process of geneticization. This process implies a redefinition of individuals in terms of DNA codes, a new language to describe and interpret human life and behavior in a genomic vocabulary of codes, blueprints, traits, dispositions, genetic mapping, and a gentechnological approach to (...) disease, health and the body. This article analyses the thesis of ‘geneticization’. Explaining the implications of the thesis, and discussing the critical refutations, it is argued that ‘geneticization’ primarily is a heuristic tool that can help to re-focus the moral debate on the implications of new genetic knowledge towards interpersonal relations, the power of medicine, the cultural context and social constraints, rather than emphasizing issues as personal autonomy and individual rights. (shrink)

This paper examines the identity of Asian swamp buffalo (Bubalus bubalis) from different value orientations. Buffalo were introduced into Northern (Top End) Australia in the early nineteenth century. A team of transdisciplinary researchers, including an ethicist, has been engaged in field research on feral buffalo in Arnhem Land over the past three years. Using historical documents, literature review, field observations, interviews with key informants, and interaction with the Indigenous land owners, an understanding of the diverse views on the scientific, cultural, (...) and economic significance of buffalo was obtained. While the diverse stakeholders in buffalo exploitation and management have historically delivered divergent value orientations on the nature of the human–buffalo relationship, we argue that over time there is the possibility of values and ethical convergence. Such convergence is possible via transdisciplinary and transcultural agreement on the value stances that constitute the construction of the being or identity of buffalo in the face of the overwhelming need to manage population density and gross numbers. (shrink)

The US neutrino community gathered at the Workshop on the Intermediate Neutrino Program at Brookhaven National Laboratory February 4-6, 2015 to explore opportunities in neutrino physics over the next five to ten years. Scientists from particle, astroparticle and nuclear physics participated in the workshop. The workshop examined promising opportunities for neutrino physics in the intermediate term, including possible new small to mid-scale experiments, US contributions to large experiments, upgrades to existing experiments, R&D plans and theory. The workshop was organized into (...) two sets of parallel working group sessions, divided by physics topics and technology. Physics working groups covered topics on Sterile Neutrinos, Neutrino Mixing, Neutrino Interactions, Neutrino Properties and Astrophysical Neutrinos. Technology sessions were organized into Theory, Short-Baseline Accelerator Neutrinos, Reactor Neutrinos, Detector R&D and Source, Cyclotron and Meson Decay at Rest sessions.This report summarizes discussion and conclusions from the workshop. (shrink)