Roma Individuals Research Articles

The Access to Rights of the Roma: Views of a Neglected Community in Türkiye

This phenomenological qualitative study, prepared using the purposive sampling technique, the problems, expectations and difficulties of the Roma experienced in accessing basic human rights in Türkiye assessed. A semi-structured interview form was used in data collection, and 26 Roma individuals from Izmir participated in the study with the help of in-depth interviews. All data were analyzed by being coded in MAXQDA 2020. Based on the participants’ life stories, the results were discussed under the themes of Roma culture, access to basic human rights, an apolitical neglected group, and expectations of the future. It was understood that the participants basically experienced economic difficulties and problems intertwined with poverty and could not meet their basic human needs, such as housing, employment, education, and health. Accordingly, the study results demonstrated the importance of rights-based practices for the Roma.

Bodies in the Making? Racial Body Schemas and Roma Youth in Leisure Spaces

Roma youth experience intensive forms of racial discrimination in leisure spaces. However, we lack insight into how Roma youth experience and counter racism in leisure spaces through agency and retaliation. For this reason, this study examines the leisure experiences of Roma youth impacted by racial schemas revolving around white/Turkish bodies. To frame the analysis, Fanon’s concepts of historico-racial and epidermal racial schemas were used. By adopting a qualitative methodology, I conducted semi-structured interviews and focus groups involving 22 young Roma individuals. The findings highlight the profound influence of racial schemas associated with white/Turkish bodies on Roma youth. However, Roma youth engaged in challenging these schemas to restore their agency and reclaim their leisure spaces. Furthermore, this study shows that Roma participants are likely to develop self-assertion when experienced explicit racism in leisure spaces; in contrast to racial discrimination that is only conducted through gazing or avoidance.

Overview of typical dental abnormalities in rare genetic syndromes occurring in the Czech Roma population.

The Roma population is agenetically isolated population with ashared origin, totaling between 10 to 14 million individuals worldwide, stemming from alimited number of "genetic founders". Roma individuals exhibit specific hereditary diseases, often stemming from recessive genetic variants due to ahigher degree of consanguinity, with recent molecular-genetic investigations shedding light on several conditions prevalent within the Czech Roma population. However, an overview of stomatological issues in diagnosing such diseases proves challenging, leading to frequent underdiagnosis or misdiagnosis. The contribution monitors the clinical description, typical symptoms and treatment options including dental abnormalities in rare genetic diseases in the Roma population which are treated in ERN CRANIO centre at Motol University Hospital in Prague. Our research provides examples of autosomal recessive diseases, which can be molecularly confirmed, and prevalent within the Roma community. These include congenital cataract syndrome, facial dysmorphism and demyelinating neuropathy, non-syndromic prelingual e.g. deafness with GJB2 gene impairment, and myasthenic syndrome. Our report aimed to provide asystematic review of dental phenotypes which can relate to Czech Roma's rare genetic disorders therapy including dental treatment. Understanding is important for preventing unterdiagnosis or treatment for the patients affected review of observed (Fig. 6, Ref. 27).

Migratory encounters, common idiom, and the king: The relationship between two Roma groups from Poland in transnational social space

Roma ethnicity presents scholars with plenty of conceptual and methodological challenges, which in the light of the increased mobility of that largest European minority after EU enlargements has additionally perplexed academics and policymakers alike. This article presents our fieldwork data derived from encounters and conversations with Roma individuals in Poland and England. Our approach to this issue is rooted in the emic perspective, examining how Roma people navigate and cope with their own heterogeneity. By focusing on the relationship between two Roma groups from Poland, namely Polska Roma and Bergitka (or Carpathian) Roma, we shed light on Roma’s practical approaches to their group identity. We explore what is at stake when boundaries are encountered, negotiated, and occasionally bridged, in particular when it comes to gender and conflict resolution strategies. In the article, we account for the two groups’ interconnections through the history of migrations and current modes of transnational living. We show how, interestingly, nationality or common country of origin may become the binding factor. This article was published open access under a CC BY licence: https://creativecommons.org/licences/by/4.0 .

Exploring Hidden Costs of Seasonal Migration in Agriculture within Roma Communities of Origin: Evidence from Romania

The article is focused on researching the hidden effects of seasonal migration in agriculture on Roma communities in Romania. The theoretical framework considers the specific nature of seasonal migration in agriculture and includes elements relevant to understanding the seasonal migration patterns of the Roma population from Romania. The research is based on a qualitative methodological design and over 120 interviews in four communities with Roma individuals and key actors at the community level (e.g., local authorities, teachers, priests, and social workers). The interviews are thematically analyzed, and the hidden costs of seasonal migration are discussed at three levels of analysis: individual, familial, and community. First and foremost, the analysis emphasizes that migration is the most significant factor of social change in the studied Roma communities, and its effects are multifaceted. The analysis reveals significant negative costs of migration in terms of health, education, employability, family, and community life. In the medium and long term, these effects decrease the positive aspects linked to the material gains from migration, making these Roma communities more vulnerable and dependent.

ADAM22 ethnic-specific variant reducing binding of membrane-associated guanylate kinases causes focal epilepsy and behavioural disorder.

Pathogenic variants of ADAM22 affecting either its biosynthesis and/or its interactions with either LGI1 and/or PSD-95 have been recently identified in individuals with developmental and epileptic encephalopathy. Here, we describe a girl with seizures, delayed psychomotor development, and behavioural disorder, carrying a homozygous variant in ADAM22 (NM_021723.5:c.2714C > T). The variant has a surprisingly high frequency in the Roma population of the Czech and Slovak Republic, with 11 of 213 (∼5.2%) healthy Roma individuals identified as heterozygous carriers. Structural in silico characterization revealed that the genetic variant encodes the missense variant p.S905F, which localizes to the PDZ-binding motif of ADAM22. Studies in transiently transfected mammalian cells revealed that the variant has no effect on biosynthesis and stability of ADAM22. Rather, protein-protein interaction studies showed that the p.S905F variant specifically impairs ADAM22 binding to PSD-95 and other proteins from a family of membrane-associated guanylate kinases, while it has only minor effect on ADAM22-LGI1 interaction. Our study indicates that a significant proportion of epilepsy in patients of Roma ancestry may be caused by homozygous c.2714C > T variants in ADAM22. The study of this ADAM22 variant highlights a novel pathogenic mechanism of ADAM22 dysfunction and reconfirms an essential role of interaction of ADAM22 with membrane-associated guanylate kinases in seizure protection in humans.

Pamięć o ofiarach zagłady Romów i Sinti a współczesny stosunek do zmarłych w społecznościach polskich Romów – podobieństwa i różnice

REMEMBRANCE OF THE ROMA AND SINTI HOLOCAUST VICTIMS IN COMPARISON TO CONTEMPORARY ATTITUDES TOWARDS THE DECEASED IN POLISH ROMA COMMUNITIES – SIMILARITIES AND DIFFERENCES
 Many contemporary scholars of Roma communities consider the extermination of the Roma during World War II as foundational to their contemporary collective identity. The commemoration of the Holocaust, which claimed the lives of over half a million European Roma and Sinti individuals, accounting for approximately 70% of their population, has now evolved into a transnational tradition that involves culturally diverse Roma communities around the world. This article aims to compare the commemoration of Holocaust victims with contemporary rituals associated with honoring the deceased in Polish Roma communities. By examining the similarities and differences between these practices, the article seeks to explore their underlying origins. In doing so, it contrasts the experience of postmemory, inherited from previous generations, with the current remembrance of the deceased in present-day contexts.

Expanding the phenotypic spectrum of TRAPPC11-related muscular dystrophy: 25 Roma individuals carrying a founder variant

BackgroundLimb-girdle muscular dystrophies (LGMD) are a heterogeneous group of genetically determined muscle disorders. TRAPPC11-related LGMD is an autosomal-recessive condition characterised by muscle weakness and intellectual disability.MethodsA clinical and histopathological characterisation...

Comparison of Genetic Susceptibility to Coronary Heart Disease in the Hungarian Populations: Risk Prediction Models for Coronary Heart Disease.

Background and Aim: It was evaluated whether the integration of genetic risk scores (GRS-unweighted, wGRS-weighted) into conventional risk factor (CRF) models for coronary heart disease or acute myocardial infarction (CHD/AMI) could improve the predictive ability of the models. Methods: Subjects and data collected in a previous survey were used to perform regression and ROC curve analyses as well as to examine the role of genetic components. Thirty SNPs were selected, and genotype and phenotype data were available for 558 participants (general: N = 279 and Roma: N = 279). Results: The mean GRS (27.27 ± 3.43 vs. 26.68 ± 3.51, p = 0.046) and wGRS (3.52 ± 0.68 vs. 3.33 ± 0.62, p = 0.001) were significantly higher in the general population. The addition of the wGRS to the CRF model yielded the strongest improvement in discrimination among Roma (from 0.8616 to 0.8674), while the addition of GRS to the CRF model yielded the strongest improvement in discrimination in the general population (from 0.8149 to 0.8160). In addition to that, the Roma individuals were likely to develop CHD/AMI at a younger age than subjects in the general population. Conclusions: The combination of the CRFs and genetic components improved the model's performance and predicted AMI/CHD better than CRFs alone.

Understanding the Impact of the First Wave of the Covid-19 Pandemic on the Access to Education of Roma Communities in Ukraine Using Ogbu’s Cultural-Ecological Theory

The global COVID-19 pandemic highlighted and in some cases exacerbated the already precarious education of Roma children in Ukraine. This study aims to understand how the first wave of the COVID-19 pandemic impacted the education of Roma children by taking a wider look at structural issues affecting the Roma community. Using mixed methods in the form of interviews with stakeholders and a survey, this paper will engage in the larger structure-agency debate through the lens of Ogbu’s cultural-ecological theory, Foster’s enhancements of it, and Crenshaw’s idea of intersectionality. The results show that between March 2020 and June 2020 the most vulnerable people in society were the ones most negatively impacted by the lockdowns and secondary effects of the pandemic. Underlying structural issues, underfunded and segregated schools with non-inclusive curriculums, intergenerational inequality, the digital divide, language barriers, intersectionality, and the pandemic’s negative impacts on Roma parents are some of the causes that Roma families reported as barriers which keep Roma children from being able to access education. However, with the agency Roma individuals have, they chose how to respond to structural oppression. This paper also demonstrates the harmful impacts of stereotypes that deem a culture to be innately resistant to education. Throughout this paper, there is a nuanced discussion which engages with previous research and theories and applies them to the new data, in order to provide a general understanding of topics that have not been heavily researched.

Roma and the First Wave of the Covid-19 Pandemic: Income Loss and Its Effects Across Roma Communities in Seven Non-EU Countries

This article focuses on income loss and its knock-on effects experienced by Roma communities in seven non-EU states during the COVID-19 pandemic and the consequent lockdown measures in the first half of 2020. Roma communities in Albania, Bosnia & Herzegovina, Moldova, Montenegro, North Macedonia, Serbia, and Ukraine were all facing socio-economic exclusion and marginalisation before the COVID-19 pandemic, thus international organisations were warning very early on that Roma communities were at serious risk during lockdowns, including in the fields of employment or loss of income. This article uses primary data collected across the seven states from a survey of 440 Roma individuals and 53 in-depth interviews with Roma stakeholders, in order to add empirical evidence to an under-researched area. The main findings include that almost 73% of those surveyed experienced a reduced income, and the major reason for this was due to access to or demand for informal work which was hindered by the lockdowns. The knock-on effects of this included 32% of those surveyed declaring an inability to afford food and everyday essentials or to pay bills. Most Roma who needed to borrow money did so through private means (family and friends) rather than through official or state institutions. Finally, there was some geographic variance between the seven countries, with Roma communities in Albania and Ukraine faring worst.

Association of HDL subfractions with cardiovascular risk in Hungarian general and Roma populations

Abstract Background High-density lipoprotein (HDL) cholesterol levels are inversely associated with cardiovascular risk (CVR). However, HDL cholesterol is not a homogeneous lipid and can be subdivided into subfractions, which are not uniformly associated with CVR. Among Roma populations, the prevalence of reduced HDL cholesterol levels and, consequently, that of cardiovascular diseases is very high. However, it is not known how this reduction affects the different HDL subfractions and whether changes in their representation are associated with changes in CVR. Methods The study aimed to investigate whether there is a difference in the HDL subfraction profile between the Hungarian general (HG) and Roma populations and to determine the association of the different subfractions with the CVR estimated by the Framingham Risk Score (FRS) and the Systematic COronary Risk Evaluation (SCORE) algorithms. HDL cholesterol was separated using the Lipoprint system, which separates 10 subfractions into three classes: large HDL (HDL-L), medium HDL (HDL-I), and small HDL (HDL-S). Analyses were carried out on samples of 100 control subjects (50 Hungarian general and 50 Roma individuals with normal lipid profiles) and 277 individuals with reduced HDL-C levels. Results Our results show that Roma has reduced levels of the overall HDL subfraction profile, with significant decreases in HDL-6, and -7. Regardless of the estimation method, elevated levels (in mmol/L) of HDL-1 to 3 and HDL-L were significantly associated with reduced risk. A higher representation (in %) of HDL-1 to 3 subfractions have a significant risk-reducing, while HDL-8 to 10 have a risk-increasing effect estimated by FRS. Conclusions The results of our study show that levels of CVR protective HDL subfractions are significantly lower in Roma individuals and their reduced levels are associated with increased CVR, suggesting that the distribution of HDL subfractions contributes to the overall unfavourable CVR profile of Roma. Key messages • Levels of HDL-6 and -7 subfractions were significantly lower in the Roma population than in the Hungarian general one. • The HDL subfraction profile of the Roma population is associated with a higher cardiovascular risk among them.

Using the Omaha System to Determine Health and Social Problems of Roma Population in Istanbul: Secondary Data Analysis.

The aim of this study was to determine the health and social problems and related behaviors of the Roma population by using the Omaha System. The data were collected from 650 Roma individuals. This study was a cross-sectional secondary data analysis and the data were collected in two stages. First, the "Technical Assistance for Promoting Social Inclusion in Densely Roman Populated Areas Project (SIROMA)" Act team evaluated health problems among Roma individuals. Second, data were reanalyzed using the Omaha System. When sociodemographic and economic characteristics were evaluated, low education level, adolescent marriages, a high number of live births, soiled living areas, unemployment, and substance use were found in the Roma population. In this context, using the Omaha System, the frequently diagnosed health and social problems were Sanitation (13.5%), Healthcare supervision (11.8%), Nutrition (11.0%), Income (9.8%), Respiration (8.3%), Substance use (7.3%), and Neighborhood/workplace safety (6.0%). This study results found out that the Roma population is less prone than natives to have healthy lifestyle behaviors and more prone to experience a deterioration in both their general and mental health. The Omaha System is a valid method used to collect and analyze data for a vulnerable population in the community. Also, it has been proven that the Omaha System Problem Classification Scheme can provide a more detailed and comprehensive assessment.

The role of the teacher in the educational achievement of Roma children

This paper discusses the role of the teacher as the one who has the most profound influence on school mobility. My analysis draws attention to the teacher, who can facilitate the performance of Roma children at school by fostering a positive attitude toward learning, encouraging positive relationships, and thereby supporting the overall social mobility of this disadvantaged minority group. The research underlying this particular study consists of analyses of the life stories of Roma individuals who hold or about to obtain university degrees and have been particularly successful in the mobility channel of the education system by the standards of the Roma community. I point to the social factors that help or hinder the progress of the individual. In the analysis, particular attention was paid to the microsocial relationships affecting the school performance of Roma students as well as to the question of secondary socialisation.

Romani Holocaust Education: What Is the Actual Influence on Students’ Attitudes?

Roma continue not only to be discriminated against and to experience racist-motivated violence. Past and present racist violence and trauma that Roma experience are largely devalued by societies in Europe today. Knowing that education plays a key role in the development of intergroup relations and the development of students’ identities, the question emerges: what is the role of educational discourses on Roma in the development of social attitudes that devalue the violence and trauma experienced by Roma individuals and communities? In this essay, I pose this question and outline existing studies that could provide us with some answers as well as with avenues for further research.

Are Roma People Descended from the Punjab Region of Pakistan: A Y-Chromosomal Perspective.

Gypsies are a separate ethnic group living in Pakistan and some other countries as well. They are mostly known as ‘Roma’ and ‘untouchables’. They have different types of lifestyles as compared to other common people, as they always keep migrating from one place to another. They do not have proper houses; they live in tent houses and most probably work on daily wages to earn their living. Gypsies cannot be specified according to the place of residence and can only be classified according to their migration route. Previous historical and linguistic research showed the north Indian origin of Roma people. The present study collected 285 unrelated Roma individuals living in Punjab and typed with the Goldeneye Y20 system. Allelic frequencies ranged between 0.0035 and 0.5266, with haplotype diversity (HD) of 0.9999 and discrimination capacity (DC) of 0.8790. Gene diversity (GD) ranged from 0.6489 (DYS391) to 0.9764 (DYS391) (DY385ab). A total of 223 unique alleles were observed. Interestingly, the haplogroup R accounted for 40.56% and J for 22.06%. In MDS analysis, Pakistani Roma formed a close cluster with Roma from Constanta, Romania. The migration pattern of the Roma population from Pakistan, India and Europe was inferred using coalescence theory in the Migrate-n program. Overlapping Y-STR data were used to test different migration models. These migration models showed us the dominant gene flow from Pakistan to India and Europe to Pakistan. The results of our study showed that Y STRs provided substantially stronger discriminatory power in the Pakistani Roma population.

The Higher Prevalence of Venous Thromboembolism in the Hungarian Roma Population Could Be Due to Elevated Genetic Risk and Stronger Gene-Environmental Interactions.

Background: Interactions between genetic and environmental risk factors (GxE) contribute to an increased risk of venous thromboembolism (VTE). Understanding how these factors interact provides insight for the early identification of at-risk groups within a population and creates an opportunity to apply appropriate preventive and curative measures.Objective: To estimate and compare GxE for VTE risk in the general Hungarian and Roma populations.Methods: The study was based on data extracted from a database consisting of results previously obtained from a complex health survey with three pillars (questionnaire-based, physical, and laboratory examinations) involving 406 general Hungarian and 395 Roma subjects. DNA was genotyped for rs121909567 (SERPINC1), rs1799963 (F2), rs2036914 (F11), rs2066865 (FGG), rs6025 (F5), and rs8176719 (ABO) polymorphisms. After allele frequency comparisons, the odds ratio (OR) was calculated for individual SNPs. Furthermore, genetic risk scores (weighted GRS, unweighted GRS) were computed to estimate the joint effect of the genetic factors. Multivariable linear regression analysis was applied to test the impact of GxE on VTE risk after interaction terms were created between genetic and VTE risk factors [diabetes mellitus (DM), cancer, chronic kidney diseases (CKD), coronary artery diseases (CAD), migraine, depression, obesity, total cholesterol (TC), low-density lipoprotein cholesterol (LDL-C), high density lipoprotein (HDL-C), triglyceride (TG), and smoking].Results: Interestingly, the rs121909567 (SERPINC1, ATBp3 mutation) SNP was not present in the general population at all. However, the risk allele frequency was 1% among the Roma population, which might suggest a founder effect in this minority. This polymorphism multiplicatively interacted with CAD, CKD, cancer, DM, depression, migraine, and obesity. Even though interactions were not statistically significant, the trend of interaction showed the probability of an incremental VTE risk among the Roma population. The risk of VTE was 4.7 times higher (p > 0.05) for Roma subjects who had ≥3 wGRS (median value) compared with individuals having lower wGRS values but lower for the general subjects (OR = 3.1 × 10−8). Additionally, the risk of VTE was 6.6 times higher in the Roma population that had ≥3 risk alleles (median value) than in individuals with the 0–1 risk allele, and the overall risk was much higher for the Roma population (OR = 6.6; p > 0.05) than for the general Hungarian population (OR = 1.5; p > 0.05). Five positive and significant GxE interactions were identified in the Roma population. The risk of VTE was higher among depressive Roma subjects who carried the risk variant rs2036914 (β = 0.819, p = 0.02); however, this interaction was not significant for the general subjects. The joint presence of high levels of LDL-C and rs2066865 (FGG) increased the VTE risk only among Roma individuals (β = 0.389, p = 0.002). The possibility of VTE risk increment, as a result of a multiplicative interaction between rs8176719 (ABO) and cancer, was identified, which was higher for the Roma population (β = 0.370, p < 0.001) than for the general population (β = −0.042, p = 0.6). The VTE risk increased in the Roma population (β = 0.280, p = 0.001), but was higher in the general population (β = 0.423, p = 0.001) as a result of the multiplicative interaction between CAD and rs2036914 (F11). The presence of a multiplicative interaction between rs2066865 (FGG) and CAD increased the VTE risk for the Roma population (β = 0.143, p = 0.046) but not for the general population (β = −0.329, p < 0.001).Conclusions: rs121909567 (SERPINC1, ATBp3) was confirmed as a founder mutation in the Roma population. Our study revealed some evidence on the burden of the joint presence of genetic and environmental risk factors on VTE, although the finding is highly subjected to the selection and observational biases due to the very small number of VTE cases and the observational nature of the study design, respectively. As a result of higher genetic load and GxE interactions, this minority Roma population is at higher risk of VTE than the general Hungarian population. Thus, our results suggest the need for an intensive search for the rs121909567 (SERPINC1; ATBp3) founder mutation, which might be an important factor for the assessment of thrombotic disease susceptibility among the Roma population. In addition, we strongly recommend further studies among a large number of VTE cases to explore the more precise impact of genetic and environmental risk factors on VTE in the study populations.

Back to “normal”: the short-lived impact of an online NGO campaign of government discrimination in Hungary

AbstractTo what extent can civil rights NGOs protect ethnic minorities against unequal treatment? We study this question by combining an audit experiment of 1260 local governments in Hungary with an intervention conducted in collaboration with a major Hungarian civil rights NGO. In the audit experiment we demonstrated that Roma individuals were about 13 percent-points less likely to receive responses to information requests from local governments, and the responses they received were of substantially lower quality. The intervention that reminded a random subset of local governments of their legal responsibility of equal treatment led to a short-term reduction in their discriminatory behavior, but the effects of the intervention dissipated within a month. These findings suggest that civil rights NGOs might face substantive difficulties in trying to reduce discrimination through simple information campaigns.

Admixture Has Shaped Romani Genetic Diversity in Clinically Relevant Variants.

Genetic patterns of inter-population variation are a result of different demographic and adaptive histories, which gradually shape the frequency distribution of the variants. However, the study of clinically relevant mutations has a Eurocentric bias. The Romani, the largest transnational minority ethnic group in Europe, originated in South Asia and received extensive gene flow from West Eurasia. Most medical genetic studies have only explored founder mutations related to Mendelian disorders in this population. Here we analyze exome sequences and genome-wide array data of 89 healthy Spanish Roma individuals to study complex traits and disease. We apply a different framework and focus on variants with both increased and decreased allele frequencies, taking into account their local ancestry. We report several OMIM traits enriched for genes with deleterious variants showing increased frequencies in Roma or in non-Roma (e.g., obesity is enriched in Roma, with an associated variant linked to South Asian ancestry; while non-insulin dependent diabetes is enriched in non-Roma Europeans). In addition, previously reported pathogenic variants also show differences among populations, where some variants segregating at low frequency in non-Roma are virtually absent in the Roma. Lastly, we describe frequency changes in drug-response variation, where many of the variants increased in Roma are clinically associated with metabolic and cardiovascular-related drugs. These results suggest that clinically relevant variation in Roma cannot only be characterized in terms of founder mutations. Instead, we observe frequency differences compared to non-Roma: some variants are absent, while other have drifted to higher frequencies. As a result of the admixture events, these clinically damaging variants can be traced back to both European and South Asian-related ancestries. This can be attributed to a different prevalence of some genetic disorders or to the fact that genetic susceptibility variants are mostly studied in populations of European descent, and can differ in individuals with different ancestries.

Advancing Economic and Social Rights, Including Education in the Context of European Minorities—2019

This article reviews international developments which took place in 2019 with a focus on economic and social rights of members of European minorities, including the right to education. The developments are reviewed based on the practice of the UN, CoE, as well as EU organizations and their bodies whose activities relate to human rights issues. This review also covers the documents of the said bodies adopted in 2018 yet having remained non- promulgated until 2019. In a nutshell, probably the most significant developments— in terms not only of the greater number of cases resolved but also of new rules proclaimed— occurred within the European Court of Human Rights (ECtHR). In particular, the ECtHR used the notion of ‘institutional racism’ in connection with police violence against Roma individuals in the case Lingurar v. Romania. The Court also articulated an extremely limited ratione materiae right to obtaining psychiatric treatment in a minority language in Rooman v. Belgium. Advancements include developments at unesco which adopted the first- ever international treaty on higher education and continued efforts in approximating diversity in education by elaborating on multi- language education.