BackgroundHIV prevention research in resource-limited countries is associated with a variety of ethical dilemmas. Key amongst these is the question of what constitutes an appropriate standard of health care (SoC) for participants in HIV prevention trials. This paper describes a community-focused approach to develop a locally-appropriate SoC in the context of a phase III vaginal microbicide trial in Mwanza City, northwest Tanzania.MethodsA mobile community-based sexual and reproductive health service for women working as informal food vendors or in traditional and modern (...) bars, restaurants, hotels and guesthouses has been established in 10 city wards. Wards were divided into geographical clusters and community representatives elected at cluster and ward level. A city-level Community Advisory Committee (CAC) with representatives from each ward has been established. Workshops and community meetings at ward and city-level have explored project-related concerns using tools adapted from participatory learning and action techniques e.g. chapati diagrams, pair-wise ranking. Secondary stakeholders representing local public-sector and non-governmental health and social care providers have formed a trial Stakeholders' Advisory Group (SAG), which includes two CAC representatives.ResultsKey recommendations from participatory community workshops, CAC and SAG meetings conducted in the first year of the trial relate to the quality and range of clinic services provided at study clinics as well as broader standard of care issues. Recommendations have included streamlining clinic services to reduce waiting times, expanding services to include the children and spouses of participants and providing care for common local conditions such as malaria. Participants, community representatives and stakeholders felt there was an ethical obligation to ensure effective access to antiretroviral drugs and to provide supportive community-based care for women identified as HIV positive during the trial. This obligation includes ensuring sustainable, post-trial access to these services. Post-trial access to an effective vaginal microbicide was also felt to be a moral imperative.ConclusionParticipatory methodologies enabled effective partnerships between researchers, participant representatives and community stakeholders to be developed and facilitated local dialogue and consensus on what constitutes a locally-appropriate standard of care in the context of a vaginal microbicide trial in this setting.Trial registrationCurrent Controlled Trials ISRCTN64716212. (shrink)

While empirical studies of research ethics and integrity are increasingly common, few have aimed at national scope, and even fewer at current results from Central and Eastern Europe. This article introduces the results of the first national research integrity survey in Estonia, which included all research-performing organisations in Estonia, was inclusive of all disciplines and all levels of experience. A web-based survey was developed and carried out in Estonia with a call sent to all accredited Estonian research institutions. The results (...) indicate that the vast majority (89%) of respondents consider research ethics and integrity issues important and view falsification, fabrication, and plagiarism (FFPs) as the most severe forms of misconduct. Self-reporting of FFPs is generally comparable to levels published in other studies (6.2%). Gift authorship (41%) and hampering the work of a colleague (32%) were problematic practices most noticed among colleagues. At the same time, two of the noticed questionable research practices (QRPs) – salami-slicing and misuse of research funding – were seen as less severe, hinting at the existence of counter-norms that career advancement rules and structural factors like funding policies may encourage. The availability of research ethics and integrity guidelines was considered good. Ethical aspects of studying potentially stigmatising data in a very small research community are discussed in the article and results are analysed through counter-norms and normative dissonance frames. (shrink)

The expansion of ethics review, beyond its origins in medical research, is the subject of growing critical analysis internationally, especially from social science researchers. Our study builds on this analysis by considering ethics review specifically within tertiary-based educational research. As a foundation for a larger study, we explore the reporting of ethics review within articles from a snapshot of education journals. A cross-sectional review considered 125 articles from 24 journals spanning medical and nurse education, the Scholarship of Teaching and Learning, (...) and educational technology. Among similar types of research our findings highlight variation in institutional ethical review processes and outcomes. Despite most journals providing guidelines for reporting ethics review, adherence to these guidelines by authors or editors was not always evident, but more likely in health-related education journals. We argue that identified areas of variation may reflect the differing influence and proximity of biomedical values. This influence has been under examined in tertiary-based educational research but may contribute to inequitable learning, researching and publishing experiences, potentially adding to negative sentiment about ethics review. (shrink)

While the need to protect vulnerable research participants is universal, conceptual challenges with the notion of vulnerability may result in the under or over-protection of participants. Ethics review bodies making assumptions about who is vulnerable and in what circumstance can be viewed as paternalistic if they do not consider participant viewpoints. Our study focuses on participant vulnerability in Scholarship of Teaching and Learning (SoTL) research. We aim to illuminate students’ views on participant vulnerability to contribute to critical analysis of the (...) role and processes of ethics review. Additionally, we aim to highlight the importance of seeking the views of participant communities, especially in research environments beyond ethics review’s medical origins. Thirty-four students from a health-related faculty at a university in Aotearoa New Zealand, participated in five focus groups. Participants discussed factors affecting their potential participation in research drawing upon a series of vignettes based on examples of published SoTL projects. Themes, generated using reflexive thematic analysis, built a participant-informed picture of vulnerability. Findings indicate that students do not generally consider themselves vulnerable and instead consider participation in SoTL research through an agentic lens. Students expect that participation will be voluntary, not negatively impact their grades, and not single them out so that others could judge them. Our study also highlights the value students place on relationships with one another and teaching staff and the implications these have for SoTL research participation and future professional practice. This research challenges research ethics committees to think further about vulnerability in the context of SoTL whilst highlighting the importance of providing opportunities for research participants more broadly to explore and vocalize their views as members of participant communities. (shrink)

Background: Attending surgeons must maintain balance between promoting education and assuring safe, transparent patient care. This investigation aimed to define ethics that guide surgical training. We hypothesized that resident autonomy in the operating room is influenced by attending approach to patients, specifically patients considered to be vulnerable. Materials and Methods: After IRB approval, surgeons from three institutions were invited to participate in a pilot, survey, exploring how principles of patient autonomy, physician beneficence, nonmaleficence, and justice apply to participant opinions. Responses (...) were transcribed and coded for quantitative and qualitative analysis. Results: 51 attendings and 55 residents completed the survey. We identified that patient autonomy is upheld through transparent consent practices. Intraoperative supervision is a key practice that maintains the principles of physician beneficence and nonmaleficence and mitigates the risk of resident participation. Vulnerable patients were defined by respondents as those unable to participate in their own consent and those limited by social determinants of health and barriers to medical literacy. In contrast, resident participation is not limited in the care of vulnerable patients but is restricted in cases of higher complexity and those procedures deemed to have lower error margins. Conclusions: Although residents measure the success of their training based on their level of intraoperative independence, autonomy afforded to the resident does not only depend on objective skill. There are ethical considerations that the attending must navigate as they decide on effective teaching and safe surgical management, which is especially relevant in the care of complex cases. (shrink)

Addressing many social challenges requires both structural and behavioral change. The binary of an i- and s-frame obscures how behavioral science can help foster bottom-up collective action. Adopting a community-frame perspective moves toward a more integrative view of how social change emerges, and how it might be promoted by policymakers and publics in service of addressing challenges like climate change.

Progressive supranuclear palsy is a movement disorder with prominent tau neuropathology. Brain diseases with abnormal tau deposits are called tauopathies, the most common of which is Alzheimer's disease. Environmental causes of tauopathies include repetitive head trauma associated with some sports. To identify common genetic variation contributing to risk for tauopathies, we carried out a genome-wide association study of 1,114 individuals with PSP and 3,247 controls followed by a second stage in which we genotyped 1,051 cases and 3,560 controls for the (...) stage 1 SNPs that yielded P ≤ 10-3. We found significant previously unidentified signals associated with PSP risk at STX6, EIF2AK3 and MOBP. We confirmed two independent variants in MAPT affecting risk for PSP, one of which influences MAPT brain expression. The genes implicated encode proteins for vesicle-membrane fusion at the Golgi-endosomal interface, for the endoplasmic reticulum unfolded protein response and for a myelin structural component. © 2011 Nature America, Inc. All rights reserved. (shrink)

Contemporary business often encompasses or aspires towards the automated, networked production of industrial goods across transnational supply chains that have many digitalized interfaces. This allows competitive operations in time, costs, and quality, which have been widely discussed. On the downside, it entails cyber threats with significant risks for society in areas including business, environment, and health. Hence, to adequately manage these risks in the emerging digital world, there is a vital necessity to raise awareness, establish, maintain, and further develop cyber-security (...) measures to ensure an appropriate level of protection along the entire value chain and supply chain. Blockchain capabilities are introduced to improve the technical and organizational basis for secured operations in industrial networks. Its advantages are explained by a simple USB-device use case, that has often been the root cause to subsequent security incidents, especially in the Stuxnet incident. (shrink)

Increasing attention is being paid to the potential of anti-retroviral treatment for HIV prevention. The possibility of eliminating HIV from a population through a universal test and treat intervention, where all people within a population are tested for HIV and all positive people immediately initiated on ART, as part of a wider prevention intervention, was first proposed in 2009. Several clinical trials testing this idea are now in inception phase. An intervention which relies on universally testing the entire population for (...) HIV will pose challenges to human rights, including obtaining genuine consent to testing and treatment. It also requires a context in which people can live free from fear of stigma, discrimination and violence, and can access services they require. These challenges are distinct from the field of medical ethics which has traditionally governed clinical trials and focuses primarily on patient researcher relationship. This paper sets out the potential impact of a population wide treatment as prevention intervention on human rights. It identifies five human right principles of particular relevance: participation, accountability, the right to health, non-discrimination and equality, and consent and confidentiality. The paper proposes that explicit attention to human rights can strengthen a treatment as prevention intervention, contribute to mediating likely health systems challenges and offer insights on how to reach all sections of the population. (shrink)

. Is R.S. Peters' way of mentioning women in his texts detrimental to philosophy of education? Some considerations and questions. Ethics and Education: Vol. 7, Creating spaces, pp. 291-302. doi: 10.1080/17449642.2013.767002.

A lively, accessible, and thought-provoking introduction to physics, its history, and its practitioners.

In the course of a note on Aen. VIII. 86 sq. by Dr. J. W. Mackail , the Servian interpretation of line 96 is supported with the observation that 'note should be taken of Virgil's distinctive use of the ablative. “Placidoaequore siluas” in his language is practically equivalent to “placidas aequoreas siluas” just as “pictas abiete puppes” is to “pictas abiegnas puppes” or “uasta uoragine gurges” to “uastus uoraginosus gurges.”’.

This article explores the contributions of women scholars, writers and artists to our understanding of the medieval past. Beginning with a contemporary artists book by Liz Mathews that draws on one of Boethius‘s Latin lyrics from the Consolation of Philosophy as translated by Helen Waddell, it traces a network of medieval women scholars of the nineteenth and twentieth centuries associated with Manchester and the John Rylands Library, such as Alice Margaret Cooke and Mary Bateson. It concludes by examining the translation (...) of the Old English poem, The Wife‘s Lament, by contemporary poet, Eavan Boland. The art of Liz Mathews and poetry of Eavan Boland and the scholarship of women like Alice Cooke, Mary Bateson, Helen Waddell and Eileen Power show that women‘s writing of the past – creative, public, scholarly – forms a strand of an archive of women‘s history that is still being put together. (shrink)

Objective To study parental attitudes to participating in questionnaire research about perinatal postmortem immediately after late miscarriage, stillbirth and termination for fetal abnormality. Design Prospective self-completion questionnaire. Setting UK fetal medicine and delivery unit. Patients 35 women and their partners after second or third trimester pregnancy loss, making decisions about having a postmortem. Methods Participants were asked to complete a questionnaire about postmortem decision-making which included questions about their attitudes to taking part in research. Prior to giving full approval for (...) the study, the Research Ethics Committee requested feedback after 10 questionnaires had been returned. Results Responses from the first 10 participants were positive about the research and the REC allowed the study to continue. 31 questionnaires were received from parents of 17 babies. Of the 22 participants who answered a question about the impact of participating in this research, 73% stated that completing the questionnaire had helped them feel better about the decision whether or not to consent to postmortem and none reported any adverse effect of completing the questionnaire. Additional comments made by 19 participants supported this finding. Conclusion Research into this sensitive area of perinatal medicine where there is a poor outcome is possible and is indeed well received by many parents. RECs should not automatically take a negative stance towards studies of this type. (shrink)