The dilemmas of providing welfare in an ethnically diverse state : seeking reconciliation in the role of a 'reflexive practitioner'

Despite an increasing commitment to tackle disadvantage and discrimination, welfare states in the West struggle to provide accessible and appropriate health and social care to people of minority ethnic populations. This article analyses the dilemmas of welfare provision in an ethnically diverse state by drawing on empirical findings from a qualitative study exploring the perceptions and experiences of family life and social support for people of Pakistani origin living in the UK, and its interface with the state as a site of potentially competing and conflicting sets of social values. We conclude by suggesting that a notion of 'reflexive practitioner' is fundamental to generating a critical insight that can deal with the tensions posed by diversity for a welfare state

Inherited blood disorders, genetic risk and global public health: framing 'birth defects' as preventable in India

This paper engages critically with the global assemblage framing sickle cell and thalassaemia disorders as a ‘global health crisis’; and the promise of genomics, largely DNA-based carrier/pre-conceptual screening, prenatal diagnosis with a view to terminations, deployed in framing a solution to these historically racialised spectrum of diseases as essentially preventable. Sickle cell and thalassaemia are recessively inherited, potentially life-threatening haemoglobin disorders with significant variation of severity, often needing life-long treatment. I argue that the re-classification of inherited blood disorders (IBDs) under ‘prevention and management of birth defects’ by the WHO in 2010 can be read as an ethical moment within the ‘globalising turn’ of IBDs and the use of genomics in addressing structural inequalities underpinning health in low- and middle-income countries. Using an Indian case study, the paper aims at first examining the language of risk through which genes and IBDs are mapped onto pre-existing populations (e.g. caste and tribe) as discrete, categories. Second, it discusses the likely social and ethical ramifications of classifying these recessive gene disorders as essentially preventable, despite cheaply available diagnostic tests and treatment options available in most countries in the South

Rice blast fungus sequenced

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Precarious Lives, Uncertainty and and the Politics of Hope:Engaging with Novel Therapies for Blood Disorders in India

This chapter explores the local, experiential context within which those affected by or caring for a child with thalassaemia choose a particular, so called, novel therapy, involving the use of thalidomide and hydroxyurea, which remains controversial within clinical literature and practice. Thalassemia is an inherited blood disorder that causes serious chronic anaemia. The novelty of this treatment circulates within a wider political economy of hope (Good et al.1990; Novas 2006).A lack of consensus in clinical practice on the safety and efficacy of thalidomide in treating thalassaemia brings home the significance of the hierarchy of methods through which evidence is selected to legitimise innovation and change. However, the processes of (re)constitution and regulation of clinical trials is not the focus of discussion here. Instead, the aim is to analyse the motivations and therapeutic journeys of those seeking this novel treatment despite uncertainty of outcomes and significant financial costs. Theoretically, the analysis hinges on the concepts of potentiality and precarity with uncertainty/hope as the mediating term—drawing our attention to the “ordinary, chronic and cruddy” aspects of everyday milieu within which the materiality of the disease, illness and caring are negotiated (Das 2015; Povellini 2011: 13)

CastorDB: a comprehensive knowledge base for Ricinus communis

<p>Abstract</p> <p>Background</p> <p><it>Ricinus communis </it>is an industrially important non-edible oil seed crop, native to tropical and subtropical regions of the world. Although, <it>R. communis </it>genome was assembled in 4X draft by JCVI, and is predicted to contain 31,221 proteins, the function of most of the genes remains to be elucidated. A large amount of information of different aspects of the biology of <it>R. communis </it>is available, but most of the data are scattered one not easily accessible. Therefore a comprehensive resource on Castor, Castor DB, is required to facilitate research on this important plant.</p> <p>Findings</p> <p>CastorDB is a specialized and comprehensive database for the oil seed plant <it>R. communis</it>, integrating information from several diverse resources. CastorDB contains information on gene and protein sequences, gene expression and gene ontology annotation of protein sequences obtained from a variety of repositories, as primary data. In addition, computational analysis was used to predict cellular localization, domains, pathways, protein-protein interactions, sumoylation sites and biochemical properties and has been included as derived data. This database has an intuitive user interface that prompts the user to explore various possible information resources available on a given gene or a protein.</p> <p>Conclusion</p> <p>CastorDB provides a user friendly comprehensive resource on castor with particular emphasis on its genome, transcriptome, and proteome and on protein domains, pathways, protein localization, presence of sumoylation sites, expression data and protein interacting partners.</p

A social profile of deaths related to sickle cell disease in India : a case for an ethical policy response

India accounts for 14.5 percent of the global SCD newborns, roughly over 42,000 a year, second to sub-Saharan Africa. Despite the availability of cheap diagnostic and treatment options, SCD remains a largely neglected disease within healthcare policy and practice. Epidemiological modeling based on small, often dated, regional studies (largely from sub-Saharan Africa) estimate that between 50 and 90 percent of affected children will/die before the age of 5 years. This premise, coupled with targets of reducing under 5 mortality (SDG 4), privileges public health interventions for screening and prevention of new births, undermining investments in long-term health and social care. This paper presents a retrospective, descriptive analysis of the socio-demographic profile of 447 patients diagnosed with sickle cell or sickle-beta thalassemia, who died following admission at a tertiary care entre in India. We used anonymized hospital records of 3,778 sickle cell patients, admitted in pediatric and adult/medical wards between January 2016 and February 2021. A majority of hospital deaths occurred in the second and third decades of life, following a hospital admission for a week. The overall mortality during 2016–2019 was 14% with little gender difference over time. Contrary to our expectations, the number of hospital deaths did not increase during the first year of the COVID-19 pandemic, between 2020 and 2021. The conclusion highlights the importance of longitudinal, socio-demographic data on deaths as providing important insights for identifying ethical policy interventions focused on improving SCD outcomes over time, reducing inequities in access to care, and preventing what might be considered “excess” deaths

The Role of Different TV Storytelling Approaches in Engaging U.S. Hispanic Parents and Caregivers Around Early Childhood Development

Educational achievement gaps exist between racial and ethnic groups in the United States; early childhood readiness, fostered in part by parents and caregivers, is crucial. To respond to this challenge, the Univision television network produced content that aired across 3 storytelling genres (scripted drama, reality, news) to entertain and educate Hispanic parents and primary caregivers of children ages 0–5 years about early brain development interventions. This pretest/posttest experimental study assessed the impact of each genre and found significant direct effects on knowledge, attitudes, and behavioral intentions; the effects were mediated by perceived entertainment value and positive emotions

Living with Sickle Cell or Beta Thalassaemia Trait: Implications for Identity and Social Life

Previous policy oriented and sociological research on sickle cell and thalassaemia disorders has tended to focus on how carrier status impacts on reproductive choices or decisions related to antenatal screening. We know little about how being a ‘healthy carrier’ impacts on people’s ideas about health and illness or, more broadly, their sense of social relationships and identity at different phases of the life-course