Ethical guidance for genomic research is increasingly sought and perceived to be necessary. Although there are pressing ethical issues in genomic research – concerning for example the recruitment of patients/participants; the process of taking consent; data sharing; and returning results to patients/participants – there is still limited useful guidance available for researchers/clinicians or for the research ethics committees who review such projects. This report outlines the ethical principles and guidance for genomic research co-produced with stakeholders during two workshops which took (...) place in the UK between November 2016 and May 2017. The stakeholders involved in these workshops included: healthcare professionals, genomic research teams, academics, patients, biobank managers, and representatives from the Health Research Authority, NHS Research Ethics Committees, patient support groups, pharmaceutical industry, and health policy think tanks. The co-produced principles and guidance are specifical... (shrink)

Introduction While quizzing during informed consent for research to ensure understanding has become commonplace, it is unclear whether the quizzing itself is problematic for potential participants. In this study, we address this issue in a multinational HIV prevention research trial enrolling injection drug users in China and Thailand. Methods Enrolment procedures included an informed consent comprehension quiz. An informed consent survey followed. Results 525 participants completed the informed consent survey (Heng County, China=255, Xinjiang, China=229, Chiang Mai, Thailand=41). Mean age was (...) 33 and mean educational level was 8 yrs. While quizzing was felt to be a good way to determine if a person understands the nature of clinical trial participation (97%) and participants did not generally find the quiz to be problematic, minorities of respondents felt pressured (6%); anxious (5%); bored (5%); minded (5%); and did not find the questions easy (13%). In multivariate analysis, lower educational level was associated with not minding the quizzing (6–10 yrs vs 0–5 yrs: OR=0.27, p=0.03; more than 11 yrs vs 0–5 yrs: OR=0.18, p=0.03). There were also site differences (Heng County vs Xinjiang) in feeling anxious (OR=0.07; p=<0.01), not minding (OR=0.26; p=0.03), being bored (OR=0.25; p=0.01) and not finding the questions easy (OR=0.10; p=<0.01). Conclusions Quizzing during the informed consent process can be problematic for a minority of participants. These problems may be associated with the setting in which research takes place and educational level. Further research is needed to develop, test and implement alternative methods of ensuring comprehension of informed consent. Trial Registration clinicaltrials.gov number NCT00270257. (shrink)

Biological ontologies are used to organize, curate, and interpret the vast quantities of data arising from biological experiments. While this works well when using a single ontology, integrating multiple ontologies can be problematic, as they are developed independently, which can lead to incompatibilities. The Open Biological and Biomedical Ontologies Foundry was created to address this by facilitating the development, harmonization, application, and sharing of ontologies, guided by a set of overarching principles. One challenge in reaching these goals was that the (...) OBO principles were not originally encoded in a precise fashion, and interpretation was subjective. Here we show how we have addressed this by formally encoding the OBO principles as operational rules and implementing a suite of automated validation checks and a dashboard for objectively evaluating each ontology’s compliance with each principle. This entailed a substantial effort to curate metadata across all ontologies and to coordinate with individual stakeholders. We have applied these checks across the full OBO suite of ontologies, revealing areas where individual ontologies require changes to conform to our principles. Our work demonstrates how a sizable federated community can be organized and evaluated on objective criteria that help improve overall quality and interoperability, which is vital for the sustenance of the OBO project and towards the overall goals of making data FAIR. Competing Interest StatementThe authors have declared no competing interest. (shrink)

Liz JacksonEducation University of Hong KongNel Noddings is known around the world for her contributions to philosophy and philosophy of education. Her work on caring and relational ethics broke ne...

The phrase τά ένί διαστηματι γ ραφόμενα occurs in that part of Pappus' Collection Book VIII which deals with instrumental solutions to problems more practical than purely geometrical. In the preceding section an instrumental solution for the problem of doubling the cube has been propounded, which is dependent on the use of a ruler passing through a point about which it is turned in the generation of the locus of points known as the cissoid, and in the subsequent section a (...) solution is propounded for the problem of finding the diameter of a cylinder of which only an incomplete portion of the side remains, leaving neither base intact. (shrink)

This memoiristic essay is a contribution to the Common Knowledge symposium titled “Fuzzy Studies: On the consequence of blur.” While probing his personal memories and making a case for devaluing our intellectual constructs, the author, an anthropologist, examines paintings by Paul Cézanne and Pieter Bruegel, poems by Wallace Stevens and W. H. Auden. The essay argues that each self-deluding “reality” we construct is only temporary, destined to fall back into the elusive, undifferentiated zone of overlap and ambiguity from which it (...) has emerged. Therefore, the author urges, we should temper the intellectual “rage for order” with an openness to chaos and contingency, along with sustained and careful attention to creative works and religious practices in which the mind appears to grasp its limits. In this way, we may substitute what Stevens called “ghostlier demarcations” for our clear, exact, and self-deceptive certainties. (shrink)

This chapter begins with a brief overview of the categories of subjective effects of alcohol, then considers the role of subjective effects from the context of prominent contemporary theories of alcohol use and misuse. Building on this conceptual foundation, it discusses important features of beverage and dose and characteristics of the setting that affect the subjective experience of drinking. It then considers what is known based on the various methodological approaches used to investigate subjective effects — including survey research on (...) alcohol expectancies and drinking motives, and ecological momentary assessment — with a particular emphasis on experimental research. (shrink)

Modern technologies have enabled the development of dynamic game- and simulation-based assessments to measure psychological constructs. This has highlighted their potential for supplementing other assessment modalities, such as self-report. This study describes the development, design, and preliminary validation of a simulation-based assessment methodology to measure psychological resilience—an important construct for multiple life domains. The design was guided by theories of resilience, and principles of evidence-centered design and stealth assessment. The system analyzed log files from a simulated task to derive individual (...) trajectories in response to stressors. Using slope analyses, these trajectories were indicative of four types of responses to stressors: thriving, recovery, surviving, and succumbing. Using Machine Learning, the trajectories were predictive of self-reported resilience with high accuracy, supporting construct validity of the simulation-based assessment. These findings add to the growing evidence supporting the utility of gamified assessment of psychological constructs. Importantly, these findings address theoretical debates about the construct of resilience, adding to its theory, supporting the combination of the “trait” and “process” approaches to its operationalization. (shrink)

This article attempts to locate the solicitor-advocacy reforms in the UK in the context of wider New Right led reforms of the welfare state and suggests that such reforms are part of a broader package aimed at weakening social democracy, encouraging the use of the market as an allocation mechanism and instilling 'efficiency' within and control over the professions. On the basis of interviews with organizational clients in Scotland, it is argued that the reforms may have a significant impact upon (...) the junior Bar and that while they may ultimately benefit corporate clients they are likely to bring further disadvantage to individual clients who are already weak within the professional-client relationship. (shrink)

This commentary responds to Moti Gorin's article “What Is the Aim of Pediatric ‘Gender‐Affirming’ Care?” We argue that Gorin's case against pediatric gender‐affirming care rests upon numerous false conceptual binaries: female/male, public/private, objective/subjective, and medically necessary/elective. Drawing on feminist bioethics, we show how such dichotomous thinking is both inaccurate and marginalizing of gender minorities.

© 2016 RCNi Ltd. All rights reserved. Background Conceptual frameworks are important to ensure a clear underpinning research philosophy. Further, the use of conceptual frameworks can support structured research processes. Aim To present a partnership model for a reflective narrative for researcher and participant. Discussion This paper positions the underpinning philosophical framework of the model in social constructionism and narrative enquiry. The model has five stages - study design, invitation to share a research space and partnership, a metaphorical research space, (...) building a community story, and reading the community story to others. Core principles of the partnership model are continual reflection by the researcher, potential reflections by participants, reciprocal sharing, and partnership in research. Conclusion A 'trajectory of self' for both participants and researchers can be enhanced within reflective partnerships. Implications for practice This model can be applied to studies that use narrative enquiry and are seeking a humanistic approach with participant engagement. (shrink)

© 2016 Regents of the University of California.The Review summarizes much of particle physics and cosmology. Using data from previous editions, plus 3,062 new measurements from 721 papers, we list, evaluate, and average measured properties of gauge bosons and the recently discovered Higgs boson, leptons, quarks, mesons, and baryons. We summarize searches for hypothetical particles such as supersymmetric particles, heavy bosons, axions, dark photons, etc. All the particle properties and search limits are listed in Summary Tables. We also give numerous (...) tables, figures, formulae, and reviews of topics such as Higgs Boson Physics, Supersymmetry, Grand Unified Theories, Neutrino Mixing, Dark Energy, Dark Matter, Cosmology, Particle Detectors, Colliders, Probability and Statistics. Among the 117 reviews are many that are new or heavily revised, including those on Pentaquarks and Inflation. The complete Review is published online in a journal and on the website of the Particle Data Group. The printed PDG Book contains the Summary Tables and all review articles but no longer includes the detailed tables from the Particle Listings. A Booklet with the Summary Tables and abbreviated versions of some of the review articles is also available. (shrink)