Many people struggle to understand the complexities of genetic problems in pregnancy and find medical language difficult to understand, particularly when faced with major decisions such as whether to terminate a pregnancy. A recent study, funded by the Economic and Social Research Council (ESRC), investigated how Britain's Bangladeshi community understand the disorders, and make decisions about testing and screening in the light of health care and religious opinion.
The researchers found language difficulties added a great deal of misunderstanding about the nature and cause of disorders. There were difficulties, for example, over the distinction between being 'affected' and being a 'carrier'. The nature of risk, and the kind of inferences that can be made from genetic testing, can also be a source of confusion. While earlier studies have found that similar confusions are common among the general public as well, the difficulties of translation can make minority groups, such as the Bangladeshis, especially vulnerable to such misunderstandings.
Those who have English as a second language are not alone in struggling to understand the complexities of medical terminology. Researchers find that these misunderstandings are not solely connected to language as a barrier but commonly to misinterpreting medical information. Such as a 75% chance of a having a child that is not being affected by a particular condition can be interpreted as having a child that is 75% normal.
Problems linked to use of interpreters are compounded by the fact that there may be medical terms for which there is no appropriate translation. Women with limited English may be entirely reliant on their husband, or another family member, for an explanation of what consultants or genetics counsellors have said. As a result, information they receive may be inaccurate, misunderstood, or incomplete.
Senior Research Fellow, Dr Santi Rozario, said: "Genetic disorder is likely to be understood by Bangladeshi Muslims in Britain, at least initially, as a biomedical problem for which conventional medical treatment is appropriate, and indeed fard (obligatory) as an Islamic duty. Bangladeshi families will therefore almost always look to the British medical system for assistance."
The research shows us that the issue is not simply one of numbers or availability of interpreters and it is a complex and difficult time for patients. Greater understanding of the language barrier and possible misunderstanding need to be considered when dealing with patients whose first language is not English.
FOR FURTHER INFORMATION, CONTACT:
Dr Sophie Gilliat-Ray on Tel: 02920 874240; e-mail: gilliat-rays@cardiff.ac.uk
Dr Santi Rozario on Tel: 02920 870122; e-mail: rozarios@cardiff.ac.uk
ESRC Press Office:
Kelly Barnett on Tel: 01793 413032, e-mail: kelly.barnett@esrc.ac.uk
Danielle Moore on Tel: 01793 413312; e-mail: danielle.moore@esrc.ac.uk
NOTES FOR EDITORS:
1. The research project 'Genetics, Religion and Identity: a study of Bangladeshi Muslims in Britain' was funded by the Economic and Social Research Council and carried out by Dr Sophie Gilliat-Ray and Dr Santi Rozario of the School of Religious and Theological Studies, Cardiff University CARDIFF CF10 3EU. Prof Stephen Pattison, also of the School of Religious and Theological Studies, Prof Angus Clarke of the Institute of Medical Genetics, and Dr Joanna Latimer of the School of Social Science were also on the project team and provided advice and support. The project website is at: www.cardiff.ac.uk/relig/research/researchcentres/csi/research/geneticsbengaliislamuk.html
2.Methodology: The study involved fieldwork observation of 20 families which had been referred for genetic counselling, or were already in the long-term care of genetics services in two UK cities. Focus-group discussions were conducted with Bangladeshi Muslim women and individual members of the community, while religious leaders were interviewed to establish how they perceived the issues involved. Relevant medical professionals were also identified, with the researchers having the opportunity to observe a number of their clinics.
3.The Economic and Social Research Council (ESRC) is the UK's largest funding agency for research and postgraduate training relating to social and economic issues. It supports independent, high quality research which impacts on business, the public sector and the third sector. The ESRC's planned total expenditure in 2008/09 is £203 million. At any one time the ESRC supports over 4,000 researchers and postgraduate students in academic institutions and research policy institutes. More at http://www.esrcsocietytoday.ac.uk
4. ESRC Society Today offers free access to a broad range of social science research and presents it in a way that makes it easy to navigate and saves users valuable time. As well as bringing together all ESRC-funded research and key online resources such as the Social Science Information Gateway and the UK Data Archive, non-ESRC resources are included, for example the Office for National Statistics. The portal provides access to early findings and research summaries, as well as full texts and original datasets through integrated search facilities. More at http://www.esrcsocietytoday.ac.uk
5.The ESRC confirms the quality of its funded research by evaluating research projects through a process of peer review. This research has been graded as 'good'.