From ‘other’ to involved: User involvement in research: An emerging paradigm

This article has been made available through the Brunel Open Access Publishing Fund. Copyright @ 2013 The Author(s). This is an Open Access article. Non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly attributed, cited, and is not altered, transformed, or built upon in any way, is permitted. The moral rights of the named author(s) have been asserted.This article explores the issue of ‘othering’ service users and the role that involving them, particularly in social policy and social work research may play in reducing this. It takes, as its starting point, the concept of ‘social exclusion’, which has developed in Europe and the marginal role that those who have been included in this construct have played in its development and the damaging effects this may have. The article explores service user involvement in research and is itself written from a service user perspective. It pays particular attention to the ideological, practical, theoretical, ethical and methodological issues that such user involvement may raise for research. It examines problems that both research and user involvement may give rise to and also considers developments internationally to involve service users/subjects of research, highlighting some of the possible implications and gains of engaging service user knowledge in research and the need for this to be evaluated

European bison (Bison bonasus) in the Chornobyl Exclusion Zone (Ukraine) and prospects for its revival

In 2012–2016 a European bison adult bull was observed (by camera traps) in the Chornobyl Exclusion Zone (CEZ, Ukraine), west of Tovstyi Lis village. This is the first record of wild bison in Kyiv Polissya for over 300 years. The animal must have come from the Paliessie State Radioecological Reserve (PSRER, Belarus), having crossed the Pripyat river. The site where he was observed is 30–40 km from the locality where bison were introduced into the PSRER in 1996. The total area over which the bull has been observed is ca. 30–50 km2, and includes deciduous (oak, hornbeam, aspen) and mixed woodlands, and former grassy meadows now overgrown with birch, alder, aspen, pine. This constitutes the most favourable habitat type for bison available in the CEZ. The animal was only observed in February–March and August–October. Currently we are not able to judge how permanently the animal stays on this territory. Taking into account the amount of appropriate habitat in the region, size of the CEZ, protection regime and the fact that bison was a native species in the past, the CEZ could be the best area in Ukraine where a large free population of the European bison could be established.У 2012–2016 рр. за допомогою фотопасток спостерігали дорослого бика зубра у Чорнобильській зоні відчуження (ЧЗВ, Україна), західніше с. Товстий Ліс. Це перша реєстрація вільного зубра у Київському Поліссі за останні 300 років. Тварина мала прийти з Поліського державного радіоекологічного заповідника (ПДРЕЗ, Білорусь), перетнувши р. Прип’ять. Ділянка спостережень знаходиться у 30–40 км від місця, де зубрів інтродукували у ПДРЕЗ у 1996 р. Загальна її площа складає близько 30–50 км2 і включає широколистяні (дуб, граб, осика) і мішані ліси та колишні вологі луки, що зараз поросли березою, вільхою, осикою, сосною. Це найсприятливіші для зубра угіддя у ЧЗВ. Тварину спостерігали лише у лютому–березні та серпні–жовтні. Зараз бракує даних, щоб судити наскільки тварина постійно тримається ділянки. Приймаючи до уваги кількість угідь, що відповідають потребам зубра, розмір ЧЗВ, охоронний режим та той факт, що колись це був автохтонний вид, ЧЗВ могла б стати найкращим місцем в Україні, де можна було б створити велику вільну популяцію зубра

Longitude : a privacy-preserving location sharing protocol for mobile applications

Location sharing services are becoming increasingly popular. Although many location sharing services allow users to set up privacy policies to control who can access their location, the use made by service providers remains a source of concern. Ideally, location sharing providers and middleware should not be able to access users’ location data without their consent. In this paper, we propose a new location sharing protocol called Longitude that eases privacy concerns by making it possible to share a user’s location data blindly and allowing the user to control who can access her location, when and to what degree of precision. The underlying cryptographic algorithms are designed for GPS-enabled mobile phones. We describe and evaluate our implementation for the Nexus One Android mobile phone

Conceptualising the emancipatory potential of populism: A typology and analysis

A central claim common to all populist movements is that they are committed to giving voice and power to those who have been forgotten, maligned, or marginalised by the status quo. However, consensus holds that they rarely – if ever –fulfil this commitment. And yet, there is a gap in our understanding of why. This article provides an original conceptual distinction between vanguardist and devolutionary populism. While the former is concerned with accessing and wielding power within the existing spaces of politics, the latter is concerned with provoking and enabling popular reimaginings of the very spaces in which politics is constituted. Using the case of South Africa, we demonstrate how our novel method can help determine where a movement might sit on the continuum between vanguardist and devolutionary populism. We make a populist campaign legible by combining detailed archival work to understand the movement's background with cutting edge cartographic techniques to map its spread and reception in digital spaces. Our conceptual distinction and methods create space to consider whether, and in what circumstances, populists might reinvigorate politics or, alternatively, compound the cynicism, divisions and tensions manifest within contemporary global politics

Ethical dilemmas are not simply black and white

This is an Accepted Manuscript of an article published by Taylor & Francis Group in Ethics and Social Practice on 1 July 2008, available online at: http://dx.doi.org/10.1080/17496530801948838.This article aims to highlight some of the ethical issues that arise when social work educators plan to involve service users and carers from black and minority ethnic (BME) communities in the teaching of social work students. Between 2005 and 2007, the authors carried out a two-part project that involved working with service users and carers from BME communities in the area around Liverpool in Britain. The article first discusses the background for this two-part project, highlighting two themes relating to the ethical dilemmas we experienced. The first of these themes concerned conducting a project in a political context based on short and intermittent funding and intransigent bureaucracy. Our second theme concerned how to reconcile bringing together a group of people because they were recognized as having a shared experience while at the same time there were a myriad differences within the group. We then discuss these issues in light of the ethical approach we adopted, based on being open and honest, flexible in a respectful and meaningful way, and on anti-oppressive ethics and shared responsibility.Peer reviewe

Temper outbursts in Lowe syndrome:Characteristics, sequence, environmental context and comparison to Prader–Willi syndrome

Background: There is limited research into the nature and aetiology of temper outbursts in people with intellectual disabilities. In this study, we describe the phenomenology and environmental context of temper outbursts in Lowe syndrome, a rare genetic syndrome in which outbursts are purportedly frequent. Method: A temper outburst interview (TOI) was conducted with caregivers of seventeen individuals with Lowe syndrome to generate an account of the behavioural sequence, common antecedents and consequences of temper outbursts, and to enable comparisons with similar work on Prader–Willi syndrome. Results: Outbursts in Lowe syndrome were frequently triggered by thwarted goaldirected behaviour and were associated with high levels of physical aggression and property destruction. Conclusions: Form and sequence of outbursts showed similarities to Prader–Willi syndrome and to behaviours reported in literature on typically developing children. The results highlight the importance of considering shared aetiology as well as syndrome‐specific pathways in the development of outbursts

Panel sequencing links rare, likely damaging gene variants with distinct clinical phenotypes and outcomes in juvenile-onset SLE

OBJECTIVES: Juvenile-onset systemic lupus erythematosus (jSLE) affects 15–20% of lupus patients. Clinical heterogeneity between racial groups, age groups and individual patients suggests variable pathophysiology. This study aimed to identify highly penetrant damaging mutations in genes associated with SLE/SLE-like disease in a large national cohort (UK JSLE Cohort Study) and compare demographic, clinical and laboratory features in patient sub-cohorts with ‘genetic’ SLE vs remaining SLE patients. METHODS: Based on a sequencing panel designed in 2018, target enrichment and next-generation sequencing were performed in 348 patients to identify damaging gene variants. Findings were integrated with demographic, clinical and treatment related datasets. RESULTS: Damaging gene variants were identified in ∼3.5% of jSLE patients. When compared with the remaining cohort, ‘genetic’ SLE affected younger children and more Black African/Caribbean patients. ‘Genetic’ SLE patients exhibited less organ involvement and damage, and neuropsychiatric involvement developed over time. Less aggressive first line treatment was chosen in ‘genetic’ SLE patients, but more second and third line agents were used. ‘Genetic’ SLE associated with anti-dsDNA antibody positivity at diagnosis and reduced ANA, anti-LA and anti-Sm antibody positivity at last visit. CONCLUSION: Approximately 3.5% of jSLE patients present damaging gene variants associated with younger age at onset, and distinct clinical features. As less commonly observed after treatment induction, in ‘genetic’ SLE, autoantibody positivity may be the result of tissue damage and explain reduced immune complex-mediated renal and haematological involvement. Routine sequencing could allow for patient stratification, risk assessment and target-directed treatment, thereby increasing efficacy and reducing toxicity

Effects of bovine parathyroid hormone and 1,25-dihydroxyvitamin D3 on the production of prostaglandins by cells derived from human bone

AbstractLocal production of prostaglandins by osteoblasts may be important in controlling the bone resorbing activity of some hormones which have receptors on osteoblasts. We have demonstrated that osteoblast-like cells derived from human bone can incorporate [14C]arachidonic acid into phospholipids and synthesise immunoreactive PGE. Parathyroid hormone increases both the release of incorporated arachidonic acid and the synthesis of PGE. This is the first demonstration of modulation of bone cell prostaglandin synthesis by a bone resorbing hormone

Spatial datasets of radionuclide contamination in the Ukrainian Chernobyl Exclusion Zone

The dataset “Spatial datasets of radionuclide contamination in the Ukrainian Chernobyl Exclusion Zone” was developed to enable data collected between May 1986 (immediately after Chernobyl) and 2014 by the Ukrainian Institute of Agricultural Radiology (UIAR) after the Chernobyl accident to be made publicly available. The dataset includes results from comprehensive soil sampling across the Chernobyl Exclusion Zone (CEZ). Analyses include radiocaesium (134Cs and 134Cs) 90Sr, 154Eu and soil property data; plutonium isotope activity concentrations in soil (including distribution in the soil profile); analyses of “hot” (or fuel) particles from the CEZ (data from Poland and across Europe are also included); and results of monitoring in the Ivankov district, a region adjacent to the exclusion zone. The purpose of this paper is to describe the available data and methodology used to obtain them. The data will be valuable to those conducting studies within the CEZ in a number of ways, for instance (i) for helping to perform robust exposure estimates to wildlife, (ii) for predicting comparative activity concentrations of different key radionuclides, (iii) for providing a baseline against which future surveys in the CEZ can be compared, (iv) as a source of information on the behaviour of fuel particles (FPs), (v) for performing retrospective dose assessments and (vi) for assessing natural background dose rates in the CEZ. The CEZ has been proposed as a “radioecological observatory” (i.e. a radioactively contaminated site that will provide a focus for long-term, radioecological collaborative international research). Key to the future success of this concept is open access to data for the CEZ. The data presented here are a first step in this process. The data and supporting documentation are freely available from the Environmental Information Data Centre (EIDC) under the terms and conditions of the Open Government Licence: https://doi.org/10.5285/782ec845-2135-4698-8881-b38823e533bf