Health professionals and ethnic Pakistanis in Britain : risk, thalassaemia and audit culture

Abstract

The central theme or `red-thread' that I consider in this thesis is the concept of risk as it is perceived by and affects the two sides of the medical encounter - in this instance ethnic Pakistanis and Health Professionals - in Britain. Each side very often perceives risk quite distinctively, relating to the balance between the spiritual and temporal realms. This is particularly germane in matters to do with possible congenital defects within the prenatal realm for the ethnic Pakistani, and predominantly Muslim, side of this encounter. Thus one of the factors considered in this thesis is how senses of Islam impact upon the two sides. By ethnic Pakistanis Islam is seen as central to all life decisions, whilst Health Professionals view Islam with some considerable trepidation, little understanding it or its centrality to the former's decision-making processes. This is particularly significant with regard to attitudes to health and health care. In the initial stages of the project I had thought first cousin marriage (FCM), seen by ethnic Pakistanis as desirable and by Health Professionals as putting ethnic Pakistanis at-risk to be central to the argument, but concluded that concerns around FCM were a `red herring', merely a trope for the tensions between the two sides - at once both British and at-risk from audit culture. Although no longer central, FCM remains a viable touchstone in consideration of the two sides' perceptions of genetic risk. In this thesis the medical encounter between ethnic Pakistanis and Health Professionals is performed within the realm of the so called New Genetics. Here the respective understandings of the New Genetics are informed by the enculturation processes that shape the two sides' world view. Furthermore, I will agree with Lord Robert Winston's and others' concern that any attempt to eradicate an adaptive genetic mutation, in this instance, thalassaemia, from the gene pool is not only undesirable in the short term, but also that such eradications may have an adverse, and far reaching, effect on whole population groups in the future. The main thrust of my argument is that audit culture not only compounds risk for both sides, but also perpetuates institutional racism within the National Health Service (NHS), by promulgating what I have called the language myth. That is to say that much institutional racism is the unwanted by-product of the NHS's attempts to become more patient centred and its continuing efforts to develop systems of best practice. This professionalisation process within the NHS can be seen to impact most strongly in relation to communication - particularly the claimed language barrier between the two sides. This `barrier' has worrying policy implications for any meaningful communication between the two sides, notably relating to obtaining informed consent from ethnic Pakistani patients - with a resultant increase in risk for the two sides and clear economic consequences for the NHS.