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Those who count : expert practices of Roma classification
\"The book scrutinizes the scientific and expert practices of Roma classification in a historic perspective focusing on the expert discourses that gave rise to Roma-related policies in the last two decades. Epistemic communities that classify and describe Roma obey the commandments of political regimes in power, to the disciplinary research traditions and to the organizational interests. The resultant of knowledge subordination is a negative Roma public image that creates and reinforce stereotypical views held by the society at large. Case studies and thorough examples in the book show that both the census as an administrative and scientific practice, as well as policy related surveys are crafting Roma identity in an essentializing manner. The census reifies Roma by the use of mutually exclusive categories and by post-codification of data while the surveys do so by unfounded representativeness claims. Roma are relegated by the experts to several types of determinism: to a social category, to a frozen culture and to a biologized entity. The recently reemerged scholarship in Roma-related genetics imported classifications and narrations created in the fields of social sciences and contributed to circulation of bio-historical narratives that singularize, pathologize and exoticize Roma\"--Provided by publisher.
Book
Those Who Count. Expert Practices of Roma Classification
Those Who Count scrutinizes the scientific and expert practices of Roma classification and counting, and the politics of Roma-related knowledge production. The book takes a historical perspective on Roma group construction, both as an epistemic object and a policy target, with a focus on the expert discourse of the last two decades. The book argues that knowledge production on Roma is neither objective nor disinterested but rather is co-produced by political and academic actors driven by organizational interests with rather narrow disciplinary research traditions, as well as by political manifestos. The result of such co-production is a negative Roma public image circulating well beyond the expert discourse which reinforces stereotypes held by society at large. The case studies and examples presented in the book show that the state-led population census, policy related surveys, as well as academic and scientific research, together craft an essentialized Roma identity. The recently reemerged Roma-related genetic research imports assumptions, classifications, and narrations from the social sciences and contributes through sampling strategies, interpretation of data, and generalization to reify and pathologize Roma ethnicity. Roma are relegated by experts to several types of determinism: to a social category, to a frozen culture, and to a homogenous biologized entity.
eBook
Those Who Count
Those Who Count scrutinizes the scientific and expert practices of Roma classification and counting, and the politics of Roma-related knowledge production. The book takes a historical perspective on Roma group construction, both as an epistemic object and a policy target, with a focus on the expert discourse of the last two decades. The book argues that knowledge production on Roma is neither objective nor disinterested but rather is co-produced by political and academic actors driven by organizational interests with rather narrow disciplinary research traditions, as well as by political manifestos. The result of such co-production is a negative Roma public image circulating well beyond the expert discourse which reinforces stereotypes held by society at large. The case studies and examples presented in the book show that the state-led population census, policy related surveys, as well as academic and scientific research, together craft an essentialized Roma identity. The recently reemerged Roma-related genetic research imports assumptions, classifications, and narrations from the social sciences and contributes through sampling strategies, interpretation of data, and generalization to reify and pathologize Roma ethnicity. Roma are relegated by experts to several types of determinism: to a social category, to a frozen culture, and to a homogenous biologized entity.
eBook
Functional Evidence of ICCDC186/I as a New Disease-Associated Gene with Endocrine and Central Nervous System Alterations
CCDC186 protein is involved in the maturation of dense-core vesicles (DCVs) in the trans-Golgi network in neurons and endocrine cells. Mutations in genes involved in DCV regulation, other than CCDC186, have been described in patients with neurodevelopmental disorders. To date, only one patient, within a large sequencing study of 1000 cases, and a single case report with variants in CCDC186, had previously been described. However, no functional studies in any of these two cases had been performed. We identified three patients from two gypsy families, unrelated to each other, with mutations in the CCDC186 gene. Clinically, all patients presented with seizures, frontotemporal atrophy, hypomyelination, recurrent infections, and endocrine disturbances such as severe non-ketotic hypoglycemia. Low levels of cortisol, insulin, or growth hormone could only be verified in one patient. All of them had a neonatal onset and died between 7 months and 4 years of age. Whole exome sequencing identified a homozygous variant in the CCDC186 gene (c.2215C>T, p.Arg739Ter) in the index patients of both families. Protein expression studies demonstrated that CCDC186 was almost undetectable in fibroblasts and muscle tissue. These observations correlated with the transcriptomic analysis performed in fibroblasts in one of the patients, which showed a significant reduction of CCDC186 mRNA levels. Our study provides functional evidence that mutations in this gene have a pathogenic effect on the protein and reinforces CCDC186 as a new disease-associated gene. In addition, mutations in CCDC186 could explain the combined endocrine and neurologic alterations detected in our patients.
Journal Article
Segregation of Roma children in education : addressing structural discrimination through the Framework Convention for the Protection of National Minorities and the Racial Equality Directive 2000/43/EC
In Segregation of Roma Children in Education, Sina Van den Bogaert examines, from the perspective of public international law, how the Framework Convention for the Protection of National Minorities (Council of Europe) and the Racial Equality Directive 2000/43/EC (European Union) have contributed towards desegregation of Roma children in education in Europe.
eBook
Barriers to primary health care: perspectives of marginalized Roma women and healthcare professionals
Background
Marginalized Roma communities (MRCs) in Slovakia experience longstanding exclusion from essential services, including healthcare. Roma women, in particular, face compounded vulnerabilities that contribute to unequal access and poorer health outcomes. Despite increasing attention to these issues, a deeper understanding of the lived experiences that shape healthcare access in MRCs remains necessary.
Methods
A qualitative study was conducted using semi-structured interviews with 13 Roma mothers living in MRCs and 13 professionals working in healthcare, public health, or policy, including six of Roma origin. Data were analyzed using consensual qualitative research and thematic analysis to identify significant access barriers.
Results
Roma women face multiple, often interconnected barriers to accessing healthcare, many of which are rooted in longstanding structural inequalities. These include distrust of the health system stemming from prior discrimination, difficulties in understanding health-related information and navigating the system, and financial hardship. On the side of healthcare providers, barriers involve shortages in the healthcare workforce, poor care coordination, and discriminatory attitudes.
Conclusions
Improving access to healthcare for Roma women requires a comprehensive, multi-level strategy. Efforts should focus on building trust, improving communication, addressing financial and systemic obstacles, and investing in culturally sensitive primary care. Health promotion assistants play a crucial role in bridging the gaps between communities and healthcare providers. Culturally sensitive healthcare interventions and inclusive policies are essential to reducing health disparities and promoting equitable access.
Journal Article
Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process
Objective Public and patient involvement is increasingly embedded as a core activity in research funding calls and best practice guidelines. However, there is recognition of the challenges that prevail to achieve genuine and equitable forms of engagement. Our objective was to identify the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research. Methods A rapid realist review of the literature that included: (a) a systematic search of CINAHL, PsycINFO, PubMed and Open Grey (2007‐2017); (b) documents provided by expert panel members of relevant journals and grey literature. Six reference panels were undertaken with homeless, women's, transgender, disability and Traveller and Roma organizations to capture local insights. Data were extracted into a theory‐based grid linking context to behaviour change policy categories. Main results From the review, 20 documents were identified and combined with the reference panel summaries. The expert panel reached consensus about 33 programme theories. These relate to environmental and social planning (7); service provision (6); guidelines (4); fiscal measures (6); communication and marketing (4); and regulation and legislation (6). Conclusions While there is growing evidence of the merits of undertaking PPI, this rarely extends to the meaningful involvement of seldom heard groups. The 33 programme theories agreed by the expert panel point to a variety of mechanisms and resources that need to be considered. Many of the programme theories identified point to the need for a radical shift in current practice to enable the reciprocal involvement of seldom heard groups.
Journal Article
European Roma groups show complex West Eurasian admixture footprints and a common South Asian genetic origin
The Roma population is the largest transnational ethnic minority in Europe, characterized by a linguistic, cultural and historical heterogeneity. Comparative linguistics and genetic studies have placed the origin of European Roma in the Northwest of India. After their migration across Persia, they entered into the Balkan Peninsula, from where they spread into Europe, arriving in the Iberian Peninsula in the 15th century. Their particular demographic history has genetic implications linked to rare and common diseases. However, the South Asian source of the proto-Roma remains still untargeted and the West Eurasian Roma component has not been yet deeply characterized. Here, in order to describe both the South Asian and West Eurasian ancestries, we analyze previously published genome-wide data of 152 European Roma and 34 new Iberian Roma samples at a fine-scale and haplotype-based level, with special focus on the Iberian Roma genetic substructure. Our results suggest that the putative origin of the proto-Roma involves a Punjabi group with low levels of West Eurasian ancestry. In addition, we have identified a complex West Eurasian component (around 65%) in the Roma, as a result of the admixture events occurred with non-proto-Roma populations between 1270-1580. Particularly, we have detected the Balkan genetic footprint in all European Roma, and the Baltic and Iberian components in the Northern and Western Roma groups, respectively. Finally, our results show genetic substructure within the Iberian Roma, with different levels of West Eurasian admixture, as a result of the complex historical events occurred in the Peninsula.
Journal Article
Europe’s Roma people are vulnerable to poor practice in genetics
Analysis of how papers and databases are handled and interpreted shows that geneticists in Europe must stamp out unethical research practices at home, not just abroad.
Analysis of how papers and databases are handled and interpreted shows that geneticists in Europe must stamp out unethical research practices at home, not just abroad.
Journal Article
Population Genetics of the European Roma—A Review
The Roma are a group of populations with a common origin that share the Romani identity and cultural heritage. Their genetic history has been inferred through multiple studies based on uniparental and autosomal markers, and current genomic data have provided novel insights into their genetic background. This review was prompted by two factors: (i) new developments to estimate the genetic structure of the Roma at a fine-scale resolution have precisely identified the ancestral components and traced migrations that were previously documented only in historical sources, clarifying and solving debates on the origins and the diaspora of the Roma; (ii) while there has been an effort to review the health determinants of the Roma, the increasing literature on their population genetics has not been subjected to a dedicated review in the last two decades. We believe that a summary on the state of the art will benefit both the public and scholars that are approaching the subject.
Journal Article