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Bulletin 3 - November 2006

Since May 2006, Dr Rozario has continued her research with the patients and their families already recruited for the study, gradually gaining wider access to the patients’ extended families. In several cases, she was able to meet family members visiting from elsewhere in the UK. Attendance at weddings and other formal or informal family gatherings has been particularly productive in this regard. Meeting members of the extended family provides a valuable additional source of information, particularly in that it has allowed Dr Rozario to cross-check and supplement the data available from the local family members. She has also interviewed several additional Bangladeshi imams (religious leaders) who have been associated with the recruited patients and families.

Dr Rozario has presented findings from her research on a number of further occasions since May 2006. The first was a paper at the Cardiff Genetics and Society Event in mid June (‘Growing up and Living with NF: Case Study of a British Bangladeshi Woman’) that has subsequently been revised and submitted to the Journal of Genetic Counselling for publication.

A second paper was presented at the Cardiff-Cambridge Genetic Discussion Meeting at the Centre for Family Research in Cambridge in July 2006 (‘How British Bangladeshi Families Understand Genetic Disorders: Daktari Problems and Upri Problems’). Dr Rozario presented a revised version of this paper at a panel (‘Anthropology and genetic disorders: patients, technologies, cultures’) which she jointly convened with Dr Alison Shaw at the European Association for Social Anthropologists (EASA) Conference in Bristol in September 2006.

She also reported on her research to the clinical staff at the Institute of Medical Genetics and to the Medicine and Society Research Interest Group, both at Cardiff University, and to a group of Cardiff University genetic counselling postgraduate students. In early 2007, Dr Rozario will present her findings to the Clinical Genetics Unit staff at the Birmingham Women’s Hospital.

A report on the project has also appeared in the Autumn 2006 issue of GIG Today (Newsletter of the Genetic Interest Group, UK).

Over the next few months Dr Rozario will continue to conduct more field research, write one or two more articles for publications, and write up the report for dissemination session to be held some time in June 2006. She also expects to revise parts of this report for publication as articles or as a short monograph.