Consanguinity, genetics and definitions of kinship in the UK Pakistani Population

YesConsanguineous marriage is a controversial topic in many Western societies, with attention mainly focused on the health of immigrant communities from Asia and Africa. In the UK consanguinity is especially prevalent in the Pakistani community which now numbers over 1.1 million. Less attention has been paid to the influence of hereditary population stratification within Pakistani communities. In particular, biraderi (literally brotherhood) membership which denotes male lineages that largely govern marriage partner choice and hence the transmission of disease genes. The various roles played by biraderi and their relationship to other socio-occupational and kinship terms, such as caste, quom and zat, are often overlooked in health-based studies. The interchangeable use of these different kinship terms without rigorous definition can create identity uncertainty and hinders inter-study comparisons. Where feasible, standardization of terminology would be both desirable and beneficial, with biraderi the preferred default term to identify specific social and genetic relationships within the Pakistani diaspora

Gendering the Diaspora: Experiences of British-Pakistani Muslim Women

Migration and settlement accounts have primarily been men’s stories within which women are either absent or represented by community spokespersons who again are largely men. The host community and state see their existence within policy perspectives regulating immigration. To fill this gap, this paper explores the gendered experiences of British-Pakistani Muslim women by investigating how they negotiate certain aspects of their diasporic lives. It builds on their narratives in matters related to education, employment, language, dress, and community associations. It discusses the pressures on women due to multiple systems of oppression created by their various identities and how women deal with them. The paper allows us to see women as agents instead of passive victims of patriarchal religious and cultural practices or even migration and settlement processes

Examining the sociocultural impacts of consanguinity and implications for healthcare : a case study of Pakistanis in Luton

A Thesis submitted to the University of Bedfordshire, in partial fulfilment of the requirements for the degree of Doctor of PhilosophyThis thesis aims to understand the sociocultural aspects of the practice of consanguinity and the implications for healthcare. Consanguinity refers to intra-familial marriage and is commonly used to refer to cousin marriage. While consanguinity remains a global phenomenon, in the recent past, it has mostly been associated with non-Western populations, and has become a taboo in Western culture. Consanguinity is linked with negative health outcomes, mostly due to genetic disorders, although the extent of this link remains debatable. In the UK, consanguinity is linked mostly with the Pakistani community, which also have an overrepresentation of children with genetic disorders. In Luton, local health reports have suggested that consanguinity in the large Pakistani community plays a role in increased infant deaths. This makes Luton and the local Pakistani community, ideally placed for understanding the practice of consanguinity and the implications for healthcare. This thesis is conceptually grounded within a constructionist approach to understanding consanguinity with a critical analysis based on theories of discourse and power and knowledge. A qualitative research design was employed using an instrumental case study approach which focused on understanding consanguinity through Luton’s Pakistani community. Three main sample groups were selected, members of the Pakistani community who are not married to their cousins and are defined as lay members in this research, members of the Pakistani community in consanguineous marriages, and local service providers (primary and secondary care)

Influence of autozygosity on common disease risk across the phenotypic spectrum.

Autozygosity is associated with rare Mendelian disorders and clinically relevant quantitative traits. We investigated associations between the fraction of the genome in runs of homozygosity (FROH) and common diseases in Genes & Health (n = 23,978 British South Asians), UK Biobank (n = 397,184), and 23andMe. We show that restricting analysis to offspring of first cousins is an effective way of reducing confounding due to social/environmental correlates of FROH. Within this group in G&H+UK Biobank, we found experiment-wide significant associations between FROH and twelve common diseases. We replicated associations with type 2 diabetes (T2D) and post-traumatic stress disorder via within-sibling analysis in 23andMe (median n = 480,282). We estimated that autozygosity due to consanguinity accounts for 5%-18% of T2D cases among British Pakistanis. Our work highlights the possibility of widespread non-additive genetic effects on common diseases and has important implications for global populations with high rates of consanguinity

Enhancing health literacy through co-design: development of culturally appropriate materials on genetic risk and customary consanguineous marriage

Aim: To develop a simple health literacy intervention aimed at supporting informed reproductive choice among members of UK communities practising customary consanguineous marriage. Background: The contribution of ‘health literacy’ to reducing health inequalities and improving primary healthcare efficiency is increasingly recognised. Enhancing genetic literacy has received particular attention recently. Consanguineous marriage is customarily practised among some UK minority ethnic communities and carries some increased risk of recessive genetic disorders among offspring compared to unions among unrelated partners. The need to enhance genetic literacy on this issue has been highlighted, but no national response has ensued. Instead, a range of undocumented local responses are emerging. Important knowledge gaps remain regarding how the development and implementation of culturally appropriate, effective and sustainable responses can be achieved. Methods: Our co-design approach involved active participation by local people. Initial insight generation employed six focus group discussions and 14 individual interviews to describe current understandings and information needs. Eleven personas (heuristic narrative portraits of community ‘segments’) resulted. Four participatory workshops provided further understanding of: preferred information channels; feasible information conveyance; and responses to existing materials. Prototype information resources were then developed and feedback gathered via two workshops. Following further refinement, final feedback from healthcare professionals and community members ensured accuracy and appropriateness. Findings: The project demonstrated the utility of co-design for addressing an issue often considered complex and sensitive. With careful planning and orchestration, active participation by diverse community members was achieved. Key learning included: the importance of establishing trusting and respectful relationships; responding to diversity within the community; and engendering a creative and enjoyable experience. The resultant materials were heavily shaped by local involvement. Evaluative work is now needed to assess impacts on knowledge and service uptake. Longer term sustainability will depend on whether innovative community-level work is accompanied by broader strategy including investment in services and professional development

Transnational subjectivities: the practice of relatedness among British Pakistanis

This thesis explores the meaning and experience of local and transnational kin connections for Pakistani Muslims living in Teesside, United Kingdom. The thesis contributes to knowledge about 'the practice of kinship' in a transnational context. The attempt to combine an investigation of transnationalism with a study of how kin relations are conducted in the present day is one of the strengths of the work. The ethnography is based on eighteen months of fieldwork carried out among British Pakistani Muslims. It explores the domestic nature of transnationalism in kin connections that forms the experiential basis of global and local relationships. The research was undertaken with the cooperation of first, second and third-generation British Pakistanis living in the north east of England. Various ethnographic qualitative methods were used to collect data, including semi- structured interviews, life histories, participant observation and focus group discussions. demonstrates the complex interplay of gender, age, origin, kin connection and life-course events in creating variation in individuals' engagement with the transnational. I argue that during their migratory experiences many first and second-generation Pakistanis display new forms of' habits of meaning' or 'habitus' to cope with differences exposed in their transnational travels. The thesis is written from the perspective of local actors: people who identify themselves as Pakistani, British Pakistani and have a Pakistani-origin. Although the thesis attempts to foreground their perspectives and narratives, it is also infused with my open interpretation and analyses, which I attempt to distinguish from local 'emic' ones. I am much less interested in this thesis in generalising claims about British Pakistani migrants, than in local practices of British Pakistanis in Teesside. For British Pakistanis, transnational practices involve not only a particular post-colonial history, but also unique understandings of the meanings of birãdari (extended family), marriage and family life and the everyday practices in which the recipients of such global processes must live. The migration of Pakistanis into the United Kingdom however, has introduced volatile relationships between kin as new configurations of space, consumption and social reproduction are negotiated. A striking aspect of the lives of those whom I interviewed was the fact that most of them were in the process of acquiring new patterns of commodity consumption and desire. Narratives from parents and grandparents contain a 're-consciousness' of property relations revealing new ideas and practices about the importance of siblings and children in the new migratory context. Moreover, they form new self-definitions of fellow British Pakistanis and relatives living in Pakistan. It is these complex transnational reconfigurations (transnationalism, subjectivity, the meaning of ‘home' and relatedness) that comprise the main subject of the present thesis. However, this thesis spans several areas of anthropological interest: the practice of kinship and relatedness. South Asian migration, transnationalism, diaspora, intergenerational conflicts, nurturing practices, ethnicity and studies of ethnic minorities in Britain

A comparative study of multilingual Pakistanis in Amsterdam and Birmingham

This thesis examines the language use of adult, first generation Pakistanis and Kashmiris settled in Amsterdam and Birmingham. It seeks to show that the research subjects' use of the many languages and language varieties at their command is neither random nor illogical, but rather, aids both community formation in the diaspora and the attainment of individual goals. This attainment of goals involves a use of language which may be pragmatic or affective but, particularly when addressing a heterogeneous audience, is often both simultaneously. The primary importance of context is illustrated. This context is both transnational, in the sense that the Pakistani migrant-settlers studied form part of a world-wide diaspora, and bounded by conditions in the two European metropolises of Amsterdam and Birmingham. There is also a local context, defined by the particular areas of town where most of the respondents lived. Finally, there is a context of power relationships operating through community networks, where gender and religion, in this case Islam, play a significant role. The Introduction discusses some historical and political aspects of language issues in the Indian subcontinent and their continuing influence. The first part of the Literature Review and much of Chapter Four, which examine previous studies of the Pakistani communities in England and the Netherlands and give background information respectively, concentrate more on the influence of place than time. Chapter Four also contains a discussion of how the concept of "diaspora" may be applied to the Pakistanis here studied. Many of the languages spoken by the respondents form part of a continuum: hence, the repeated use of terms such as "the Punjabi family of languages", or, "the Pahari group". These and other terms are defined in the Methodology section, which is Chapter Three. Issues of methodology are not restricted to Chapter Three but are also strands which run through the whole work. The highly multilingual nature of the research subjects rendered some techniques favoured by sociolinguists, such as matched guise tests, inappropriate. The mobility of many individuals posed both practical and analytical difficulties. Some questions of particular social relevance to the group studied influenced research design, such as the separation of the sexes and, in Amsterdam, the presence of undocumented workers in the community. Language issues which are of great concern to researchers in Pakistan and northern India have less relevance in the Netherlands and England, and the reverse is also true. This became apparent to the researcher through conversations with scholars in Pakistan during her fieldwork visit there. More co-operation by scholars in the regions of origin and in the regions of settlement on the interface between ethnicity and language is needed. Any such collaborative research could have important applications in the areas of language planning and language rights. Chapter Five discusses findings from the individual interviews and Chapter Six deals with the analysis of the observation of group interactions. They are separate sections for clarity of exposition but this separation is artificial. All of the interviewees also participated in at least one and typically several of the group events. Hence, it was possible to observe and analyse the differences and similarities between individuals' reported and actual language use, and how individuals, with their distinct histories and statuses contribute to and benefit from group multilingual encounters. The Conclusion shows how the Pakistani communities studied - and the researcher believes this must be true of many other migrant groups - came from multiethnic, multicultural and multilingual societies and settled in similarly heterogeneous environments in Europe. Hence, far from suffering crises as a result of being "between two cultures", they were able to use tried and tested strategies in the new environment to their advantage. Central to such regroupment and reworking of tradition was their multilingualism