'Genes R us in ways that have nothing whatsoever to do with the narrow meaning of genetic determinism and everything to do with entire worlds of social practice'. (Haraway 1997: 231)
'Where the process of purification takes place relatively smoothly - where silence resounds about any given innovation - this too is fertile ground for social scientists. In this instance, the initial task is of course to name the hybrid, for it will usually be camouflaged as though it is a natural entity'. (Lock 2000: 236)
Although many aetiological agents have been linked to breast cancer, in more than 90 per cent of cases the cause is still essentially unknown. However, in the field of oncology, there has long been a suspected connection between family history and some cancers, including breast cancer. Although this association pre-dates the rapid developments in genetic technology that transformed genetic science in the 1970s (Gaudilliere 2001), it was 'confirmed' when two'inherited susceptibility' genes, BRCA1 and BRCA2, were identified in the mid-1990s. Come to be known as the 'breast cancer genes', they have arguably become one, if not the, most public and publicised development in a raft of rapid advances in the human genetics over the last 10 years (Henderson and Kitzinger 1999).1 They are understood to be inherited in a dominant way so that a person with a parent who carries a mutation on one of these genes has a 50 per cent chance of inheriting the same gene mutation. It is commonly thought that they are involved in about 5-10 per cent of the population who develop breast cancer. Estimates for assessing the increased lifetime risk of developing breast cancer for carriers of mutations on these genes were originally thought to be universally high. This risk is now thought to range between 35 and 80 per cent (the 'normal' life time risk is 9 per cent).2 Despite this recent and ongoing re-assessment of the risks conferred by carrying a BRCA mutation and the logistically complex, time-consuming, as well as costly nature of genetic testing in the UK, this service has now become available in specialist clinics for those at 'high risk' of developing the disease. More importantly genetic risk assessment for breast cancer is at the vanguard of an expanding field of clinical genetics in the UK's national service of health provision. (Wonderling etal. 2001).
The beginning of the 1990s saw the growth and emergence of 'preventative' public health campaigns in the UK and elsewhere emphasising the risk of breast cancer for all women and the importance of mammography screening and health awareness. It is a campaign which has itself been fuelled by and helped to inform a somewhat diverse yet growing culture of health 'activism' around the disease. Coupled with an exceptionally heightened media interest, which ensures that breast cancer is four times more likely to be headline news than any other cancer (Saywell et al. 2000), these developments have helped propel the public profile of the disease to an unprecedented high level.
It is the premise of this book that the intersections between these two developments are vital to understanding the emergence of breast cancer genetics as a field of medical practice and scientific research. Although these are dynamics which others have also begun to examine (Cartwright 2000;Kaufert 2003;Parthasarathy 2003), this book provides an important ethnographic perspective in examining the scope, scale and circuitous nature of the connections between these developments. It maps the practices of transmission and translation from and between patients and practitioners in cancer genetic clinics to broader public domains of health activism and fundraising within a breast cancer research charity and finally back to the space of the laboratory. Drawing attention to a process of 'co-production' at the interface between health activism and BRCA genetics, the book explores the social dynamics, cultural as well as gendered politics that are part of both these high profile developments. Challenging a linear model of technological innovation or social impact, it illustrates how the work of translation from and between the laboratory, clinic and wider world is informed by and also itself has 'up' and 'downstream' consequences for different persons and practices.
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