Article

Europe’s Roma people are vulnerable to poor practice in genetics

Authors:
  • University College Freiburg
To read the full-text of this research, you can request a copy directly from the authors.

Abstract

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.

No full-text available

Request Full-text Paper PDF

To read the full-text of this research,
you can request a copy directly from the authors.

... Αναλυτικότερα, πέρα από το ότι τα δεδομένα τους βασίζονται σε ανέκδοτα/ανεπίσημα στοιχεία ή φτωχά σχεδιασμένες περιγραφικές μελέτες χαμηλής αξιοπιστίας, η δειγματοληψία γίνεται πολλές φορές σε επίπεδο τοπικό ή κοινότητας ή ακόμα και με βάση συγκεκριμένες ομάδες ατόμων (μητρώα δομών υγείας, σωφρονιστικά καταστήματα, απομακρυσμένες κοινότητες κλπ.) με ανεπαρκή μεγέθη δειγμάτων. 154,156,187 Επιπλέον, είναι σύνηθες φαινόμενο ο τρόπος που ερμηνεύονται από τους ίδιους τους ερευνητές (αλλά και από τα άτομα που χαράσσουν πολιτικές, τα MME κλπ.) αυτά τα ευρήματα να οδηγεί σε μια γενίκευση των αποτελεσμάτων, η οποία τελικά ανάγεται στο σύνολο αυτού που αποκαλείται πληθυσμός Ρομά, είτε σε εθνικό είτε ακόμα και σε διεθνές επίπεδο. 188 ...
Full-text available
Thesis
BACKGROUND: The systematic discrimination to which the Roma are subject over time had a significant impact on their health status, which is in a much more unfavorable position than that of non-Roma in many European countries. Infectious diseases consist an important part of Roma morbidity. Of these, blood-borne and sexually transmitted diseases, especially hepatitis B (HBV) and C (HCV) and HIV infection, have a particular burden on public health. The lack of reliable data on the prevalence of infectious diseases is recognized internationally as a major barrier to the development of effective programs to prevent and control their spread. PURPOSE: The aim of the thesis, which concerns the adult Roma population living in settlements in Greece, is to assess: 1. the living conditions and the factors affecting their health status 2. regarding viral HBV and HCV and HIV infection: a. the treatment cascade, b. the HBV vaccination coverage rate, c. the knowledge and attitudes in relation to the above diseases and to evaluate the relevant awareness-raising activities, 3. the self-assessment of their health status and the self-reported diagnosed chronic diseases, and 4. the use of health services and the possible barriers to accessing them in Greece. METHODOLOGY: Data were derived from the Hprolipsis Nationwide Health Survey, which collected data on Roma living in communities from December 2014 to January 2016 and the sample was based on quota random sampling with a target population of approximately 500 adults. The data were collected from four regions of Greece. In each of the regions three types of Roma settlements were selected a. Type 1 (houses), b. Type 2 (houses and shacks/mixed) and c. Type 3 (shacks). All Roma adults were invited to participate in the study, maintaining the desired and predefined gender and age distribution. After providing participants with relevant information and having their signed consent, a questionnaire was filled out and a blood sample was taken to test serological markers of HBV and HCV and HIV infection. For the statistical analysis, apart from descriptive statistics, multivariable logistic or ordinal logistic regression or mixed effects models were applied, depending on the nature of the response variable. RESULTS: The study included 534 Roma (287 women and 247 men), with a median age (interquartile range) of 35 (25, 48) years. More than half (50.7%) had never been to school, less than 30% were working permanently or temporarily, and just 35.8% said they never had food insecurity. Only 4.1% of the participants stated that they had all four basic household facilities (water, electricity, heating and toilet inside the house) in their household. HBV prevalence was estimated at 7.5% with 95% CI (5.50, 10.07), and regarding the HBV treatment cascade, of the 39 participants with HBsAg(+), 9 (23.1%) stated that they had been previously diagnosed and 2 (5.1%) had received some treatment. The prevalence of anti-HCV in men (no women tested positive) was estimated at 2.9% with 95% CI (1.40, 5.90). Regarding the HCV treatment cascade, of the 7 participants with anti-HCV(+), 1 (14.3% ) stated that he had already been diagnosed and received some treatment. None of the participants tested positive for HIV. Twenty six per cent of the participants answered "I don't know" to the HBV, HCV and HIV infection knowledge questions and about 40% had a low general level of knowledge. Approximately 50% stated that they had a piercing/tattoo, 80% that they did not use condoms when having sex with their partner and that they had never been tested for the diseases in question, and 5% that they had previously been diagnosed with a Sexually Transmitted Disease (STD). According to the results of the evaluation of the awareness raising activities in a subset of the participants (N=94), the high general level of knowledge increased from 7.9% to 42.6% for all three diseases in total. About 62% of the participants answered that they had good/very good health, 26% that they had average health, and 12% that they had poor/very poor health. Approximately half of the participants overall and 29% of those with good/very good self-rated health reported having at least one chronic disease. High blood pressure (15.7%), high cholesterol (11.8%), depression (10.1%) and respiratory diseases (9.2%) were the most common self-reported as diagnosed chronic diseases. In the last year, about 65% of the participants had seen a doctor and 10% needed to be hospitalized. Approximately 50% of the participants were uninsured and 37% needed access to the health system but did not have it. Financial cost (74.4%) and distance from the health facility/lack of transport (18.6%) were the two most frequently stated reasons. According to the results from the multivariable analysis, a number of demographic and socio-economic variables that are among the social determinants of health appeared to be significantly related to the above health indices. CONCLUSIONS-RECCOMMENDATIONS: The data obtained from the Hprolipsis study can contribute decisively to the better planning of public health policies for Roma living in settlements in Greece and at the same time form the basis for monitoring the situation and evaluating the programs implemented. The use of the conceptual framework for social health determinants and approaches based on the direct involvement of Roma communities should be central pillars of future health policies and programs designed for this group.
... We do not discuss the selected genetic studies and their results in depth, but concentrate on sampling practices and representativity. Ethical questions, despite unavoidably popping up in Lipphardt et al. (2021). In spite of the problematic aspects we are going to point out, it is still important for us to state that in studies from the past ten years, we have noticed a trend towards more transparency regarding ethical procedures, self-assignment in recruitment, more cautious wording and more balanced methodologies. ...
Full-text available
Article
Argument Moreau (2019) has raised concerns about the use of DNA data obtained from vulnerable populations, such as the Uighurs in China. We discuss another case, situated in Europe and with a research history dating back 100 years: genetic investigations of Roma. In our article, we focus on problems surrounding representativity in these studies. We claim that many of the circa 440 publications in our sample neglect the methodological and conceptual challenges of representativity. Moreover, authors do not account for problematic misrepresentations of Roma resulting from the conceptual frameworks and sampling schemes they use. We question the representation of Roma as a “genetic isolate” and the underlying rationales, with a strong focus on sampling strategies. We discuss our results against the optimistic prognosis that the “new genetics” could help to overcome essentialist understandings of groups.
... There are relatively clear ethical frameworks governing genetics and genomics research in biomedicine that emphasise the responsibility of the researcher to research participants and to society. Strict adherence to them is vital in order to avoid public and policy backlashes, such as those seen over unethical human genome editing experiments in China and Mexico [22,23], and non-consensual collection of DNA materials and data from minorities in China and Europe [24,25]. While this shows that ethical conduct within biomedical genetics research can also still be erratic, the data collection from minorities and marginalised communities, in particular, has recently required focussed attention within forensic genetics research. ...
Full-text available
Article
Forensic genetics comes under critical scrutiny when developments challenge previously accepted legal, ethical, social, and other boundaries. Forensic geneticists continue to build a knowledge culture within a community of practice that acknowledges ethical standards of conduct in both research and the societal application of forensic genetics. As the community further cements and extends its societal role, and in that process often pushing at ethical and legal boundaries, it requires a strong, resilient, and responsive ethos that, in setting clear parameters for conduct, fosters the field’s sense of purpose. While supra-national declarations and human rights protections, coupled with local regulations, provide some parameters for practice, and discipline-specific guidance has refined an agenda for forensic genetics research and application, this maturing field needs to now define its core principles. This contribution proposes the values of integrity, trustworthiness, and effectiveness as a foundational triptych for a bespoke forensic genetics ethos to ensure the augmentation of developments that range from a purely science-oriented to a wider societally relevant knowledge culture.
... How should genomic and health data be collected and how should it be shared between clinical, academic, commercial and other settings? How can we minimise the risk of inappropriate discrimination against individuals or groups (Lipphardt et al. 2021), or other harms from misapplication of the data? When research is proposed that would examine the experiences of under-served groups, they will need to be engaged in ways that do not increase stigma, and patients should not feel pressured into contributing to research. ...
Full-text available
Article
Advances in human genetics raise many social and ethical issues. The application of genomic technologies to healthcare has raised many questions at the level of the individual and the family, about conflicts of interest among professionals, and about the limitations of genomic testing. In this paper, we attend to broader questions of social justice, such as how the implementation of genomics within healthcare could exacerbate pre-existing inequities or the discrimination against social groups. By anticipating these potential problems, we hope to minimise their impact. We group the issues to address into six categories: (i) access to healthcare in general, not specific to genetics. This ranges from healthcare insurance to personal behaviours. (ii) data management and societal discrimination against groups on the basis of genetics. (iii) epigenetics research recognises how early life exposure to stress, including malnutrition and social deprivation, can lead to ill health in adult life and further social disadvantage. (iv) psychiatric genomics and the genetics of IQ may address important questions of therapeutics but could also be used to disadvantage specific social or ethnic groups. (v) complex diseases are influenced by many factors, including genetic polymorphisms of individually small effect. A focus on these polygenic influences distracts from environmental factors that are more open to effective interventions. (vi) population genomic screening aims to support couples making decisions about reproduction. However, this remains a highly contentious area. We need to maintain a careful balance of the competing social and ethical tensions as the technology continues to develop.
... [mdg4 elements (Gerasimova et al. 1983;Bayev et al. 1984) have also been referred to as "gypsy" elements (Modolell et al. 1983). However, discussions of the potential offensiveness of "gypsy" in this context (Mau cec 2013; Entomological Society of America 2021; Imbler 2021; Lipphardt et al. 2021), and Flybase rule 2.2.8 for gene names, suggest that the elements be referred to with a neutral synonym. With this in mind, we elect to use mdg4, but acknowledge the alternate term for the sake of connecting this study to the literature.] ...
Full-text available
Article
Insect body color is an easily assessed and visually engaging trait that is informative on a broad range of topics including speciation, biomaterial science, and ecdysis. Mutants of the fruit fly Drosophila melanogaster have been an integral part of body color research for more than a century. As a result of this long tenure, backlogs of body color mutations have remained unmapped to their genes, all while their strains have been dutifully maintained, used for recombination mapping, and part of genetics education. Stemming from a lesson plan in our undergraduate genetics class, we have mapped sable1, a dark body mutation originally described by Morgan and Bridges, to Yippee, a gene encoding a predicted member of the E3 ubiquitin ligase complex. Deficiency/duplication mapping, genetic rescue, DNA and cDNA sequencing, RT-qPCR, and two new CRISPR alleles indicated that sable1 is a hypomorphic Yippee mutation due to a mdg4 element insertion in the Yippee 5’-UTR. Further analysis revealed additional Yippee mutant phenotypes including curved wings, ectopic/missing bristles, delayed development, and failed adult emergence. RNAi of Yippee in the ectoderm phenocopied sable body color and most other Yippee phenotypes. Although Yippee remains functionally uncharacterized, the results presented here suggest possible connections between melanin biosynthesis, copper homeostasis, and Notch/Delta signaling; in addition, they provide insight into past studies of sable cell nonautonomy and of the genetic modifier suppressor of sable.
... The need to meaningfully engage with marginalized, indigenous, Aboriginal, and BIPOC communities is critical in order to address their concerns and incorporate their goals, but also to ensure they are not left behind in the move to more open data sharing (Mc Cartney et al., 2022). Protecting vulnerable populations, particularly those that have been abused by the research community in the past, is of paramount importance (Lipphardt et al., 2021;Normile, 2021;Thomas & Quinn, 1991). ...
Article
Open data sharing democratizes science by making data more equitably available throughout the world. Furthermore, open data sharing improves the reproducibility and quality of research and enables new collaborations powered by the freely available data. Open data are defined as data that can be freely used, reused, and redistributed by anyone. For an interdisciplinary field like biological anthropology, data sharing is critical since one person cannot easily collect data across the domains relevant to our field. The goal of this paper is to encourage broader data sharing in our discipline by exploring the state of data sharing in the field of biological anthropology. Our paper is divided into four parts: the first section describes the benefits, challenges, and emerging solutions to open data sharing; the second section presents the results of our data archiving and sharing survey that was completed by over 700 researchers; the third section presents personal experiences of data sharing by the authors; and the fourth section discusses the strengths of different types of data repositories and provides a list of recommended data repositories.
Article
A new, very large genome-wide association study has uncovered many novel genetic factors associated with circulating lipid levels. The success of this study came partly from analysing many samples, but mostly from including individuals of non-European ancestry. So, why is studying genetic diversity important and how can it help to fight cardiovascular disease?
Full-text available
Chapter
Tanulmányunkban azt vizsgáljuk, hogy a különböző sérülékeny, illetve érzékeny csoportokkal kapcsolatban hogyan épül be a retorikába és jogi érvelésbe a pandémiához köthető egyenlőtlenségre való hivatkozás; ezek az érvek az újabb módszertani modellek alapján hogyan támaszthatók alá tudományosan; és végül milyen következménye lehet mindennek. Ez utóbbit a Black Lives Matter (BLM) mozgalom és a hozzá köthető Defund the Police (DtP) szlogen konkrét példáján keresztül szemléltetjük.
Full-text available
Thesis
Full-text available
Preprint
Since the early 1990s, DNA data has been collected in Roma communities in international collaborations from forensic and medical genetics, yielding 45 forensic genetics publications drawing on DNA data from Roma. No other minority or population group from Europe has received such a high level of attention. This paper examines data collections represented in forensic genetic journals and databases relative to internationally respected ethical standards. It demonstrates that ethical requirements are rarely met by studies and data sets. For some data, consent may have been obtained for purposes other than forensics. Several studies list co-authors affiliated with investigative or military forces. What we have observed can be described as a generalised lack of transparency and as deficiency in awareness of the ethical sensitivity of DNA data from Roma in forensic contexts. In some cases, data sharing practices and non-transparent reporting may be concealing "data laundering".
Full-text available
Preprint
Moreau (2019) has raised concerns about the usage of DNA data obtained from vulnerable populations, such as the Uighurs in China. We discuss another case, situated in Europe and with a research history dating back 100 years: genetic investigations of Roma. While Moreau is mainly concerned with ethical issues, especially regarding informed consent, and though we share his concerns, here we focus on problems surrounding representativity. We claim that many of the ca. 440 publications in our sample neglect the methodological and conceptual challenges of representativity. Moreover, authors do not account for problematic misrepresen-tations of Roma resulting from the conceptual frameworks and sampling schemes they use. We question the representation of Roma as a "genetic isolate" and the underlying rationales, with a strong focus on sampling strategies. We discuss our results against the optimistic prognosis that the "new genetics" could help to overcome essentialist understandings of groups.
Full-text available
Article
Integration of genomic technology into healthcare settings establishes new capabilities to predict disease susceptibility and optimize treatment regimes. Yet, Indigenous peoples remain starkly underrepresented in genetic and clinical health research and are unlikely to benefit from such efforts. To foster collaboration with Indigenous communities, we propose six principles for ethical engagement in genomic research: understand existing regulations, foster collaboration, build cultural competency, improve research transparency, support capacity building, and disseminate research findings. Inclusion of underrepresented communities in genomic research has the potential to expand our understanding of genomic influences on health and improve clinical approaches for all populations.
Full-text available
Article
This paper starts from the observation that, since the collapse of eastern European state socialism, the Roma have become the subject and target of Europe-wide development programs and discourses, while, at the same time, they have been problematized in terms of social, public and national security. Due to the ways in which development and security have ambiguously come together in Europe’s recent history, I will argue that the living conditions of the poorest among the Roma have not only worsened, but also, and more fundamentally, the divide between Europe’s rich and poor has become seriously racialized and almost unbridgeable. I explain how the bio- and geopolitical conditions under which development and security have merged in Europe’s engagement with the Roma have led to a situation in which the official aim of Roma-related development programs – the improvement of their living conditions and life chances – tends to result in a dreadlock.
Full-text available
Article
An analysis by Alice B. Popejoy and Stephanie M. Fullerton indicates that some populations are still being left behind on the road to precision medicine.
Full-text available
Article
Title: Beyond the Line: Violence and the Objectification of the Karitiana Indigenous People as Extreme Other in Forensic Genetics. Abstract: Utilizing social semiotic approaches, this article addresses how genetic researchers’ organizing narratives have involved extensive ontological and epistemological violence in their objectification of the Karitiana Indigenous people of Western Brazil. The paper analyses how genetic researchers have represented the Karitiana in the US and Canadian courts, post-9/11 forensic identification technology development, and in patents. It also considers disputes over the sale of Karitiana cell lines by Coriell Cell Repositories. These case studies reveal how the prominent population geneticist Kenneth K. Kidd of Yale University and other genetics researchers have constituted the Karitiana as Extreme Other; liminal figures who define the boundaries of humanity.
Full-text available
Article
The Roma, also known as 'Gypsies', represent the largest and the most widespread ethnic minority of Europe. There is increasing evidence, based on linguistic, anthropological and genetic data, to suggest that they originated from the Indian subcontinent, with subsequent bottlenecks and undetermined gene flow from/to hosting populations during their diaspora. Further support comes from the presence of Indian uniparentally inherited lineages, such as mitochondrial DNA M and Y-chromosome H haplogroups, in a significant number of Roma individuals. However, the limited resolution of most genetic studies so far, together with the restriction of the samples used, have prevented the detection of other non-Indian founder lineages that might have been present in the proto-Roma population. We performed a high-resolution study of the uniparental genomes of 753 Roma and 984 non-Roma hosting European individuals. Roma groups show lower genetic diversity and high heterogeneity compared with non-Roma samples as a result of lower effective population size and extensive drift, consistent with a series of bottlenecks during their diaspora. We found a set of founder lineages, present in the Roma and virtually absent in the non-Roma, for the maternal (H7, J1b3, J1c1, M18, M35b, M5a1, U3, and X2d) and paternal (I-P259, J-M92, and J-M67) genomes. This lineage classification allows us to identify extensive gene flow from non-Roma to Roma groups, whereas the opposite pattern, although not negligible, is substantially lower (up to 6.3%). Finally, the exact haplotype matching analysis of both uniparental lineages consistently points to a Northwestern origin of the proto-Roma population within the Indian subcontinent.European Journal of Human Genetics advance online publication, 16 September 2015; doi:10.1038/ejhg.2015.201.
Full-text available
Article
The Romani, the largest European minority group with approximately 11 million people [1], constitute a mosaic of languages, religions, and lifestyles while sharing a distinct social heritage. Linguistic [2] and genetic [3-8] studies have located the Romani origins in the Indian subcontinent. However, a genome-wide perspective on Romani origins and population substructure, as well as a detailed reconstruction of their demographic history, has yet to be provided. Our analyses based on genome-wide data from 13 Romani groups collected across Europe suggest that the Romani diaspora constitutes a single initial founder population that originated in north/northwestern India ∼1.5 thousand years ago (kya). Our results further indicate that after a rapid migration with moderate gene flow from the Near or Middle East, the European spread of the Romani people was via the Balkans starting ∼0.9 kya. The strong population substructure and high levels of homozygosity we found in the European Romani are in line with genetic isolation as well as differential gene flow in time and space with non-Romani Europeans. Overall, our genome-wide study sheds new light on the origins and demographic history of European Romani.
Full-text available
Article
The identification of a growing number of novel Mendelian disorders and private mutations in the Roma (Gypsies) points to their unique genetic heritage. Linguistic evidence suggests that they are of diverse Indian origins. Their social structure within Europe resembles that of the jatis of India, where the endogamous group, often defined by profession, is the primary unit. Genetic studies have reported dramatic differences in the frequencies of mutations and neutral polymorphisms in different Romani populations. However, these studies have not resolved ambiguities regarding the origins and relatedness of Romani populations. In this study, we examine the genetic structure of 14 well-defined Romani populations. Y-chromosome and mtDNA markers of different mutability were analyzed in a total of 275 individuals. Asian Y-chromosome haplogroup VI-68, defined by a mutation at the M82 locus, was present in all 14 populations and accounted for 44.8% of Romani Y chromosomes. Asian mtDNA-haplogroup M was also identified in all Romani populations and accounted for 26.5% of female lineages in the sample. Limited diversity within these two haplogroups, measured by the variation at eight short-tandem-repeat loci for the Y chromosome, and sequencing of the HVS1 for the mtDNA are consistent with a small group of founders splitting from a single ethnic population in the Indian subcontinent. Principal-components analysis and analysis of molecular variance indicate that genetic structure in extant endogamous Romani populations has been shaped by genetic drift and differential admixture and correlates with the migrational history of the Roma in Europe. By contrast, social organization and professional group divisions appear to be the product of a more recent restitution of the caste system of India.
Full-text available
Article
Background: Data provided by the social sciences as well as genetic research suggest that the 8-10 million Roma (Gypsies) who live in Europe today are best described as a conglomerate of genetically isolated founder populations. The relationship between the traditional social structure observed by the Roma, where the Group is the primary unit, and the boundaries, demographic history and biological relatedness of the diverse founder populations appears complex and has not been addressed by population genetic studies. Results: Recent medical genetic research has identified a number of novel, or previously known but rare conditions, caused by private founder mutations. A summary of the findings, provided in this review, should assist diagnosis and counselling in affected families, and promote future collaborative research. The available incomplete epidemiological data suggest a non-random distribution of disease-causing mutations among Romani groups. Conclusion: Although far from systematic, the published information indicates that medical genetics has an important role to play in improving the health of this underprivileged and forgotten people of Europe. Reported carrier rates for some Mendelian disorders are in the range of 5-15%, sufficient to justify newborn screening and early treatment, or community-based education and carrier testing programs for disorders where no therapy is currently available. To be most productive, future studies of the epidemiology of single gene disorders should take social organisation and cultural anthropology into consideration, thus allowing the targeting of public health programs and contributing to the understanding of population structure and demographic history of the Roma.
Book
"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 describeRoma 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 viewsheld 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.
Article
Genome-wide association studies (GWASs) have focused primarily on populations of European descent, but it is essential that diverse populations become better represented. Increasing diversity among study participants will advance our understanding of genetic architecture in all populations and ensure that genetic research is broadly applicable. To facilitate and promote research in multi-ancestry and admixed cohorts, we outline key methodological considerations and highlight opportunities, challenges, solutions, and areas in need of development. Despite the perception that analyzing genetic data from diverse populations is difficult, it is scientifically and ethically imperative, and there is an expanding analytical toolbox to do it well.
Article
This special issue showcases work that theorises and critiques the political, economic, legal, and socio-historical (‘ethnic’ or ‘cultural’) subordination of the European Roma (so-called ‘Gypsies’), from the specific critical vantage point of Roma migrants living and working within and across the space of the European Union (EU). Enabled primarily through ethnographic research with diverse Roma communities across the heterogeneous geography of ‘Europe’, the contributions to this collection are likewise concerned with the larger politics of mobility as a constitutive feature of the sociopolitical formation of the EU. Foregrounding the experiences and perspectives of Roma living and working outside of their nation-states of ‘origin’ or ostensible citizenship, we seek to elucidate wider inequalities and hierarchies at stake in the ongoing (re-)racialisation of Roma migrants, in particular, and imposed upon migrants, generally. Thus, this special issue situates Roma mobility as a critical vantage point for migration studies in Europe. Furthermore, this volume shifts the focus conventionally directed at the academic objectification of ‘the Roma’ as such, and instead seeks to foreground and underscore questions about ‘Europe’, ‘European’-ness, and EU-ropean citizenship that come into sharper focus through the critical lens of Roma racialisation, marginalisation, securitisation, and criminalisation, and the dynamics of Roma mobility within and across the space of ‘Europe’. In this way, this collection contributes new research and expands critical interdisciplinary dialogue at the intersections of Romani studies, ethnic and racial studies, migration studies, political and urban geography, social anthropology, development studies, postcolonial studies, and European studies.
Article
This manuscript extends on earlier recommendations of the editor of the International Journal of Legal Medicine on short tandem repeat population data and provides details on specific criteria relevant for the analysis and publication of population studies on haploid DNA markers, i.e. Y-chromosomal polymorphisms and mitochondrial DNA. The proposed concept is based on review experience with the two forensic haploid markers databases YHRD and EMPOP, which are both endorsed by the International Society for Forensic Genetics. The intention is to provide guidance with the preparation of population studies and their results to improve the reviewing process and the quality of published data. We also suggest a minimal set of required information to be presented in the publication to increase understanding and use of the data. The outlined procedure has in part been elaborated with the editors of the journal Forensic Science International Genetics.
Article
Family-based research in genetically isolated populations is an effective approach for identifying loci influencing variation in disease traits. In common with all studies in humans, those in genetically isolated populations need ethical approval; however, existing ethical frameworks may be inadequate to protect participant privacy and confidentiality and to address participants' information needs in such populations. Using the ethical-legal guidelines of the Council for International Organizations of Medical Sciences (CIOMS) as a template, we compared the participant information leaflets and consent forms of studies in five European genetically isolated populations to identify additional information that should be incorporated into information leaflets and consent forms to guarantee satisfactorily informed consent. We highlight the additional information that participants require on the research purpose and the reasons why their population was chosen; on the potential risks and benefits of participation; on the opportunities for benefit sharing; on privacy; on the withdrawal of consent and on the disclosure of genetic data. This research raises some important issues that should be addressed properly and identifies relevant types of information that should be incorporated into information leaflets for this type of study.
Murderous Science: Elimination by Scientific Selection of Jews, Gypsies, and Others
  • B Müller-Hill
Müller-Hill, B. Murderous Science: Elimination by Scientific Selection of Jews, Gypsies, and Others, Germany, 1933-1945 (Oxford Univ. Press, 1988).
  • K G Claw
Claw, K. G. et al. Nature Commun. 9, 2957 (2018).
  • C Yıldız
  • De Genova
Yıldız, C. & De Genova, N. Soc. Identities 24, 425-441 (2018).
  • D Gresham
Gresham, D. et al. Am. J. Hum. Genet. 69, 1314-1331 (2001).
  • I Mendizabal
Mendizabal, I. et al. Curr. Biol. 22, 2342-2349 (2012).
  • B Martínez-Cruz
Martínez-Cruz, B. et al. Eur. J. Hum. Genet. 24, 937-943 (2016).
  • H Van Baar
van Baar, H. Social Identities 24, 442-458 (2018).
  • A Carracedo
Carracedo, A. et al. Forensic Sci. Int. Genet. 4, 145-147 (2010).
  • D Mascalzoni
Mascalzoni, D. et al. Eur. J. Hum. Genet. 18, 296-302 (2010).
  • K N Fox
Fox, K. N. Engl. J. Med. 383, 411-413 (2020).
  • R E Peterson
Peterson, R. E. et al. Cell 179, 589-603 (2019).