Objective: To determine the views of people with multiple sclerosis (MS) and professionals in relation to confidentiality, consent and access to data within a proposed MS register in the UK. Design: Qualitative study using focus groups (10) and interviews (13). Setting: England and Northern Ireland. Participants: 68 people with MS, neurologists, MS nurses, health services management professionals, researchers, representatives from pharmaceutical companies and social care professionals. Results: People with MS expressed open and altruistic views towards the use of their personal (...) information to facilitate service provision and research, placing trust in responsible guardianship and legitimate use of their information. Participant’s proposed that people with MS should be able to select their individual level of involvement in a register using levels of consent. It was agreed that access to the register should be governed by a guardianship committee composed of a range of stakeholders. People with MS did not wish their details to be used by marketing agencies and did not consider this a legitimate use of their data. Whilst participants were positive of the role a register could play in promoting research, participants felt that access to data by pharmaceutical industries should be administered by the guardianship committee. People with MS are concerned should their employers be able to access their personal information. Professionals were more cautious than people with MS in their approach to the use of patient personal data within a register. Conclusions: Whilst all stakeholders were positive of the benefits of an MS register, development of such a resource must incorporate robust data security and guardianship measures in order to ensure that, whilst opportunities are maximised, risks to the privacy of individuals and legal challenges to professionals are avoided. (shrink)

Our understanding of what microbes are and how they evolve has undergone many radical shifts since the late nineteenth century, when many still believed that bacteria could be spontaneously generated and most thought microbial “species” (if any) to be unstable and interchangeable in form and function (pleomorphic). By the late twentieth century, an ontology based on single cells and definable species with predictable properties, evolving like species of animals or plants, was widely accepted. Now, however, genomic and metagenomic data show (...) that lateral gene transfer compromises this picture of stability and predictability, and refocuses our attention on multilineage communities. Treating such communities as unstable but identifiable evolving “individuals” makes us again pleomorphists, of a sort. (shrink)

The internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of (...) potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a ‘report’ button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them. (shrink)

Gilbert and colleagues point out the discrepancy between the limited empirical data illustrating changes in personality following implantation of deep brain stimulating electrodes and the vast number of conceptual neuroethics papers implying that these changes are widespread, deleterious, and clinically significant. Their findings are reminiscent of C. P. Snow’s essay on the divide between the two cultures of the humanities and the sciences. This division in the literature raises significant ethical concerns surrounding unjustified fear of personality changes in the context (...) of DBS and negative perceptions of clinician-scientists engaged in DBS. These concerns have real world implications for funding future innovative, DBS trials aimed to reduce suffering as well as hampering true interdisciplinary scholarship. We argue that the philosophical tradition of pragmatism and the value it places on empirical inquiry, experiential knowledge, and inter-disciplinary scholarship – reflecting diverse ways of knowing – provides a framework to start to address the important questions Gilbert and colleagues raise. In particular, we highlight the importance of expert clinician knowledge in contributing to the neuroethical questions raised by Gilbert and colleagues. Finally, we provide illustrative examples of some of our interdisciplinary empirical research that demonstrate the iterative cycle of inquiry characteristic of pragmatism in which conceptual neuroethics questions have led to empirical studies whose results then raise additional conceptual questions that give rise to new empirical studies in a way that highlights the contributions of the humanities and the sciences. (shrink)

An ethics consultant’s scope of practice is best understood as equipping stakeholders to achieve closure over time following after the ethics consultation. This is in contrast to Autumn Fiester’s position in the article, “Neglected Ends: Clinical Ethics Consultation and the Prospects for Closure,” where she claims that moral closure is a necessary condition for the proper completion of an ethics consultation case.

We address the question of the effectiveness of affirmative action agreements concluded by a regulatory body with employers in order to achieve greater equality in employment. We analyse the pattern of affirmative action agreements concluded by the Fair Employment Commission with employers in Northern Ireland between 1990 and 2000. We examine the association between these agreements and changes occurring in the religio-political composition of these employer's workforces during that period, based on a statistical analysis of monitoring data collected by the (...) Commission from employers, compared with employers that did not enter into such agreements. We find that firms reaching agreements with the Commission demonstrated significant evidence of change over the decade. We conclude that such agreements were likely to have been an integral part of the processes driving change in the Northern Ireland labour market in the 1990s. (shrink)

Koonin, in an article in this issue, claims that CRISPR–Cas systems are mechanisms for the inheritance of acquired adaptive characteristics, and that the operation of such systems comprises a “Lamarckian mode of evolution.” We argue that viewing the CRISPR–Cas mechanism as facilitating a form of “directed mutation” more accurately represents how the system behaves and the history of neoDarwinian thinking, and is to be preferred.

This collection, the first of its kind, brings together specially commissioned academic essays to mark fifty years since the death of John Kennedy Toole.

This chapter takes a longitudinal approach to the survey of intelligence research published in Australia, or by Australian authors overseas, in the decade 2007–2017, analyses it, and compares these findings with trends overseas. It then undertakes a quantitative and qualitative survey of intelligence education programs at Australian and Western tertiary institutions in order to show how Australia fares in an international context. It concludes by offering some suggestions on the way ahead for Intelligence Studies in Australia.

Models of the work-to-family and family-to-work interface were tested in two heterogeneous samples of workers, one from North America (N = 408) and one from China (N = 442), using the same measures translated from English to Chinese using back translation. Consistent with proposed differences in the centrality of work and family, tolerance of work demands, and the availability of family support, work-to-family spillover effects tended to be stronger in the North American sample, whereas family-to-work spillover effects tended to be (...) stronger in the Chinese sample. However, some inconsistencies across cultures did not conform to this generalization. Results point to asymmetric differences between North America and China in the work–family interface. Theoretical implications for resource scarcity and expansionist perspectives are discussed, as well as those for the applicability of work–family interventions across North America and China. (shrink)

Objective: To examine changes in patients’ desired control of the deep brain stimulator and perception of global life control throughout DBS.Methods: A consecutive cohort of 52 patients with Parkinson’s disease was recruited to participate in a prospective longitudinal study over three assessment points. Semi-structured interviews assessing participants’ desire for stimulation control and perception of global control were conducted at all three points. Qualitative data were coded using content analysis. Visual analog scales were embedded in the interviews to quantify participants’ perceptions (...) of control over time.Results: Participants reported significant increases in their perception of global control over time and significant declines in their desired control of the stimulation. These changes were unrelated to improvements in motor symptoms. Improvements in global control were negatively correlated with a decline in desired stimulation control. Qualitative data indicate that participants have changed, nuanced levels of desired control over their stimulators. Increased global life control following DBS may be attributed to increased control over PD symptoms, increased ability to engage in valued activities, and increased overall self-regulation, while other domains related to global control remained unaffected by DBS.Conclusions: There are few empirical data documenting patients’ desire for stimulation control throughout neuromodulation and how stimulation control is related to other aspects of control despite the growing application of neuromodulation devices to treat a variety of disorders. Our data highlight distinctions in different types of control and have implications for the development of patient-controlled neurostimulation devices. (shrink)

Despite ever‐increasing accumulation of genomic data, the fundamental question of how individual genes are switched on during development, lineage‐specification and differentiation is not fully answered. It is widely accepted that this involves the interaction between at least three fundamental regulatory elements: enhancers, promoters and insulators. Enhancers contain transcription factor binding sites which are bound by transcription factors (TFs) and co‐factors expressed during cell fate decisions and maintain imposed patterns of activation, at least in part, via their epigenetic modification. This information (...) is transferred from enhancers to their cognate promoters often by coming into close physical proximity to form a ‘transcriptional hub’ containing a high concentration of TFs and co‐factors. The mechanisms underlying these stages of transcriptional activation are not fully explained. This review focuses on how enhancers and promoters are activated during differentiation and how multiple enhancers work together to regulate gene expression. We illustrate the currently understood principles of how mammalian enhancers work and how they may be perturbed in enhanceropathies using expression of the α‐globin gene cluster during erythropoiesis, as a model. (shrink)

This article is written in response to Method Lab #2, reacting to and reading scenes from the theatre and the school classroom. We responded to ‘The table and the dancer’ by Carla J. Maier with drawings by Janna R. Wieland, and ‘The book and the authors reading’ by Elise v. Bernstorff and Carla J. Maier. Our responses are within the ontological turn and specifically posthuman studies and new material feminism(s). We move beyond representational thinking to explore vibrant matter and experiment (...) with what more the text, scenes and pictures can become. (shrink)

How do people learn to talk about the causal and temporal relations between events, and the motivation behind why people do what they do? The narrative practice hypothesis of Hutto and Gallagher holds that children are exposed to narratives that provide training for understanding and expressing reasons for why people behave as they do. In this context, we have recently developed a model of narrative processing where a structured model of the developing situation is built up from experienced events, and (...) enriched by sentences in a narrative that describe event meanings. The main interest is to develop a proof of concept for how narrative can be used to structure, organize and describe experience. Narrative sentences describe events, and they also define temporal and causal relations between events. These relations are specified by a class of narrative function words, including “because, before, after, first, finally.” The current research develops a proof of concept that by observing how people describe social events, a developmental robotic system can begin to acquire early knowledge of how to explain the reasons for events. We collect data from naïve subjects who use narrative function words to describe simple scenes of human-robot interaction, and then employ algorithms for extracting the statistical structure of how narrative function words link events in the situation model. By using these statistical regularities, the robot can thus learn from human experience about how to properly employ in question-answering dialogues with the human, and in generating canonical narratives for new experiences. The behavior of the system is demonstrated over several behavioral interactions, and associated narrative interaction sessions, while a more formal extended evaluation and user study will be the subject of future research. Clearly this is far removed from the power of the full blown narrative practice capability, but it provides a first step in the development of an experimental infrastructure for the study of socially situated narrative practice in human-robot interaction. (shrink)

Paper edition (unseen), $14.95. Annotation copyright by Book News, Inc., Portland, OR.

The medial temporal lobe supports both navigation and declarative memory. On this basis, a theory of phylogenetic continuity has been proposed according to which episodic and semantic memories have evolved from egocentric and allocentric navigation in the physical world, respectively. Here, we explored the behavioral significance of this neurophysiological model by investigating the relationship between the performance of healthy individuals on a path integration and an episodic memory task. We investigated the path integration performance through a proprioceptive Triangle Completion Task (...) and assessed episodic memory through a picture recognition task. We evaluated the specificity of the association between performance in these two tasks by including in the study design a verbal semantic memory task. We also controlled for the effect of attention and working memory and tested the robustness of the results by including alternative versions of the path integration and semantic memory tasks. We found a significant positive correlation between the performance on the path integration the episodic, but not semantic, memory tasks. This pattern of correlation was not explained by general cognitive abilities and persisted also when considering a visual path integration task and a non-verbal semantic memory task. Importantly, a cross-validation analysis showed that participants' egocentric navigation abilities reliably predicted episodic memory performance. Altogether, our findings support the hypothesis of a phylogenetic continuity between egocentric navigation and episodic memory and pave the way for future research on the potential causal role of egocentric navigation on multiple forms of episodic memory. (shrink)

BackgroundThere is increasing need for peer reviewers as the scientific literature grows. Formal education in biostatistics and research methodology during residency training is lacking. In this pilot study, we addressed these issues by evaluating a novel method of teaching residents about biostatistics and research methodology using peer review of standardized manuscripts. We hypothesized that mentored peer review would improve resident knowledge and perception of these concepts more than non-mentored peer review, while improving review quality.MethodsA partially blinded, randomized, controlled multi-center study (...) was performed. Seventy-eight neurology residents from nine US neurology programs were randomized to receive mentoring from a local faculty member or not. Within a year, residents reviewed a baseline manuscript and four subsequent manuscripts, all with introduced errors designed to teach fundamental review concepts. In the mentored group, mentors discussed completed reviews with residents. Primary outcome measure was change in knowledge score between pre- and post-tests, measuring epidemiology and biostatistics knowledge. Secondary outcome measures included level of confidence in the use and interpretation of statistical concepts before and after intervention, and RQI score for baseline and final manuscripts.ResultsSixty-four residents (82%) completed initial review with gradual decline in completion on subsequent reviews. Change in primary outcome, the difference between pre- and post-test knowledge scores, did not differ between mentored (−8.5%) and non-mentored (−13.9%) residents (p = 0.48). Significant differences in secondary outcomes (using 5-point Likert scale, 5 = strongly agree) included mentored residents reporting enhanced understanding of research methodology (3.69 vs 2.61; p = 0.001), understanding of manuscripts (3.73 vs 2.87; p = 0.006), and application of study results to clinical practice (3.65 vs 2.78; p = 0.005) compared to non-mentored residents. There was no difference between groups in level of interest in peer review (3.00 vs 3.09; p = 0.72) or the quality of manuscript review assessed by the Review Quality Instrument (RQI) (3.25 vs 3.06; p = 0.50).ConclusionsWe used mentored peer review of standardized manuscripts to teach biostatistics and research methodology and introduce the peer review process to residents. Though knowledge level did not change, mentored residents had enhanced perception in their abilities to understand research methodology and manuscripts and apply study results to clinical practice. (shrink)

Working the night shift can be fraught and experienced as demanding and, yet, is often dismissed as babysitting. Few researchers have explored the social and cultural meanings of night nursing, including storytelling rituals. In 2019, a narrative study was undertaken. The aim was to explore the stories recalled by nurses about working night shifts. Thirteen Australian nurses participated. Data were gathered using the Biographical Narrative Interview Method, and narrative analysis produced forty stories and three themes: strange and challenging experiences; colleagues (...) can be mentors (or not); and textbook knowledge is only part of what is needed on night shift. Nursing students who engage with these stories may come to understand the challenges of the night shift, and the valuable work that nurses engage in throughout a 24‐hr period, work that involves adept psychosocial and interpersonal skills alongside technical and physical competence. (shrink)

This study examines how the self-reported cheating behaviors of students from a single large institution serving primarily adult students in online courses differ from those previously reported in large-scale studies of academic integrity among traditional-age college students. Specifically, the research presented here demonstrates that students at a large online university are no more likely to engage in most forms of cheating than the traditional-age students in residential institutions studied by Donald McCabe in his seminal research on academic integrity. Relatedly, our (...) study finds that students’ age decreases the likelihood of engaging in cheating behaviors. Moreover, traditional-age undergraduates in our study were no more likely to engage in cheating behaviors than the undergraduate students McCabe surveyed. Our study offers a unique contribution to the extant literature on academic integrity, as we believe this is the largest survey of student attitudes, beliefs, and behaviors from a single institution. The research presented here confounds the common perception that cheating is more prevalent and easier to accomplish in online learning and assessment. (shrink)

In emergency research, obtaining informed consent can be problematic. Research to develop and improve treatments for patients admitted to hospital with life-threatening and debilitating conditions is much needed yet the issue of research without consent (RWC) raises concerns about unethical practices and the loss of individual autonomy. Consistent with the policy and practice turn towards greater patient and public involvement in health care decisions, in the US, Canada and EU, guidelines and legislation implemented to protect patients and facilitate acute research (...) with adults who are unable to give consent have been developed with little involvement of the lay public. This paper reviews research examining public opinion regarding RWC for research in emergency situations, and whether the rules and regulations permitting research of this kind are in accordance with the views of those who ultimately may be the most affected. (shrink)