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Bulletin 2 - May 2006

Since September 2005, when finally the NHS Trust gave Dr Santi Rozario (Senior Research Fellow) approval to undertake research both in Cardiff and in Birmingham, substantial progress has been made, especially in terms of recruiting patients.

By now Dr Rozario has recruited nearly 20 families in Cardiff and Birmingham. Among the conditions in the families are:

2 siblings with XP (xeroderma pigmentosum)2 (mother and daughter) cases of NF11 of CS (cockayne syndrome)1 of AS (angelman syndrome)1 of TS (tuberous scleorosis)1 case of dysmorphic symptoms 1 first-cousin married couple with a history of triplets and associated health problems1 first-cousin married couple with a history of long-term infertility which led them to seek IVF treatment in private, but who finally had twins naturally after 12 years of marriage1 case of carnitine syndrome 1 affected with thalassaemia5 families with members who were carriers of some traits of thalassaemia, 1 case of bardet biedel syndrome1 case of pendred syndrome1 case of MD (muscular dystrophy) 1 with severe asthma problems.While not all of these conditions are recessive disorders, we are interested in the fact that most couples are first cousins. We have been finding, surprisingly, that cousin marriages are fairly common among the Bangladeshis in the U.K. (contrary to Dr Rozario's experience in Bangladesh). It is quite common for a British Bangladeshi girl born and brought up in the U.K. to marry a cousin brought up in Bangladesh. We have been asking people to reflect on the fact that biologically cousin couples have a somewhat higher risk of having children with genetic disorders. Respondents’ reaction to this is revealing; generally they do not see why cousin marriages would pose any problem. First, it is allowed in Islam, and second children with genetic disorders are born to ‘white families’ (presumably not cousin couples), and to Asian couples who are not related. To most of our respondents (but not to all), it is Allah who decides on these things, and cousin marriages do not explain anything. Through contact with the patient’s immediate family Dr Rozario is gradually getting access to their extended family members, neighbours and friends. This is providing her with opportunities to ask relevant questions to the relatives and she is beginning to get a good sense of how information about genetics is transmitted or not, and how much family members understand about a particular genetic disorder, or genetic disorders in general. Not surprisingly, in almost all cases the parents and family only have a very basic understanding of the particular disorder and there is usually a lot of misunderstanding. The concept of a family member being ‘carrier’, rather than being affected, does not make sense to most people. Also the concept of the probability of parents passing on the same problem to any of their future offspring being 25% or 50% is almost always misunderstood. Dr Rozario is also getting access to more Islamic religious leaders (she has interviewed six so far) and she is taking the opportunity to explore issues of termination, contraception and consanguinity in Islam, as they themselves understand these, as well as discussing the kind of advice they give their patients. She finds that understanding of genetic disorders is very limited among Bangladeshi Muslim religious leaders in the UK. Bangladeshis do not generally seek their advice when a family member has a particular genetic disorder, although they might ask them to pray for a sick member. There is a group of health problems Bangladeshis will regularly go to see their religious leaders for, often associated with bad jinn (evil spirit) and religious leaders can deal with these. Genetic disorder is seen more directly as a daktari (or medical) problems and while various religious measures are resorted to, resort to biomedical treatment is seen as a religious obligation (faraz [1]). Dr Rozario is collecting extensive data on the kind of religious measures adopted by patients and their families along with medical help to ensure Allah turns His favour upon them and makes their children better. These religious measures include:sadga (giving money or animal to poor people in Bangladesh, through their relatives there); khattam (arranging for one or more imams to read the whole Qur’an from the beginning till the end, followed by feeding relatives and some poor people - again this is done in Bangladesh); frequent animal sacrifice, again in Bangladesh; use of pani pora (consecrated water) to drink, and tel pora (consecrated oil) to massage;an amulet (with a special verse from the Qur’an), tied to the child’s clothes or around its waist; soaking the paper with a special verse written on it in water and then having the patient drink it; etc. Sometimes the items required will be imported from Bangladesh through relatives or friends going there for a holiday. People also get water from the holy well in Saudi Arabia, called Zamzam. This water will be drunk by the patient, but often by other family members. Most of the families of patients that Dr Rozario has interviewed have been to Mecca on umrah (the lesser pilgrimage), or are planning to go on hajj. Some who have already done the umrah would now like to take their child to the main hajj. All these religious measures are adopted in the hope that the patient will get better, and people will often report that their child has been a lot better since they have been to hajj. On the theme of religion, we are finding that most parents see their child’s genetic disorder as Allah’s gift, and therefore also Allah’s blessing. There also seems to be a belief that because their child is sinless, his or her prayer (dua) will eventually assist in the parents going to behesto (heaven). Such explanation of their child’s disorder clearly helps parents to cope with the child’s condition. However, often the parent, usually the mother although it could be the father, who is more closely involved in caring for the child, will not necessarily share such feelings and expresses feelings of despair and profound sadness at the predicament of their child.Most of Dr Rozario's research so far has been visiting families in their homes, but sometimes she has been able to visit health professionals with some of the families. She has had the opportunity to visit some specialists (e.g. consultant paediatrician, genetic consultants, paediatric oncologist etc) with patients and is getting a sense of what patients make of their meetings with these specialists. Very little, however, has come up so far in the way of potential clashes between what the health professionals say and what the patient’s religion or their religious leaders might say. The original project was modelled in part on Dr Alison Shaw’s research on genetic disorders with British Pakistanis. Dr Rozario has been in regular contact with Dr Shaw and we expect to be able to identify some of the similarities and differences between our findings and present them in an appropriate forum followed by publication. We are jointly convening a panel on "Anthropology and genetic disorders: patients, technologies, cultures" at the EASA (European Association for Social Anthropologists) conference in Bristol in September 2006. We are both also presenting papers in this panel and are hoping to publish the papers from the panel as a jointly edited book or special issue of journal. Dr Rozario also plans to present some of her research findings at the Cardiff Genetics and Society Event in mid June ("Growing up and Living with NF: Case Study of a British Bangladeshi Woman") and at the Cardiff/Cambridge Social Science and Genetics meeting in Cambridge in mid July ("How British Bangladeshi Families Understand Genetic Disorders: Daktari Problems and Upri Problems")Basically our research is now going very well, and most of Dr Rozario's time is now being taken up with anthropological fieldwork with families, religious leaders and other relevant people in Birmingham and Cardiff. [1] = Arabic fard — see e.g. the Islamic Academy website 'Islam the Glorious religion': http://www.islamicacademy.org/html/Books/GLIS/tsc.htm.