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Bulletin 1 - October 2005

In January 2005, Dr Santi Rozario arrived in the UK and took over as Senior Research Fellow on this project. While formal recruitment of patients could not begin until August 2005, because of delays involved in obtaining R & D approval from the two NHS trusts concerned, in Cardiff and Birmingham, Dr Rozario made considerable progress during this period in becoming acquainted with relevant staff in Cardiff and Birmingham and in becoming familiar with relevant aspects of the migrant health scene and of genetic health practice in the UK. Dr Rozario also established contacts with community workers and the wider group of researchers on migrant health issues in South Wales. While the project is centred around Bangladeshi patients with genetic diseases and their families, along with health care providers and religious leaders, we feel that it is vital to situate this research within the wider socio-cultural context in which the patients and their families live and operate on a day to day basis. Dr Rozario has therefore got to know many members of the Bangladeshi community in Cardiff and Birmingham, including Islamic clerics, with the aim of building up an ethnographic picture of the community. In September 2005, Dr Rozario commenced research with a number of patients and their families in Cardiff and Birmingham areas. She is beginning to get a sense of the role of Islam and of extended family members in helping to cope with their problems, and how they make decisions about future pregnancy, including potential terminations of pregnancy. Dr Rozario took part in and gave a presentation at the Sickle Cell and Thalassaemia Awareness Weeks in Cardiff in July 2005, giving a paper on "Genetics, Religion and Identity among British Bangladeshis: Some Initial Findings". Since no interviews had taken place with patients or their families at the time of this paper, it was based on informal interviews with Bangladeshi women and with a number of Bangladeshi imams (Muslim clerics) in Cardiff and Birmingham. This paper has now been revised and submitted for publication to the journal Diversity in Health and Social Care. Overall, we feel that excellent progress has been made with the project in 2005, and a firm foundation has been built for further work.