Geneticisation and the social impact of the new genetics

Questions of 'impact' have been central to the ways in which social science has begun to address developments in genetic knowledge and technology. However, this work has been somewhat narrowly defined (Kaufert 2000). On the one hand, there has been a tendency to examine the psychological or social consequences of technologies, such as genetic testing, for the relatively small numbers of persons undergoing these procedures.3 At the same time attempts to broaden the field of analysis have tended to separate the consequences of genetic knowledge and technology for patients from changes in health policy or the social context of medical practice itself (see, for instance, Marteau and Richards 1996). One of the repercussions of this demarcation has been not only a tendency to sustain the novelty of these developments, often referred to as the 'new genetics', but also a theoretical emphasis given to the notion of 'geneticisation'. Responding mostly to genetic developments in reproductive medicine, this concept has been used to posit that genetic knowledge is leading in a direct and linear way to a new reduc-tionism and determinism about health, disease and the body (Lippman 1992, 1998;Nelkin and Lindee 1995;Hubbard and Wald 1997;Rothman 1998;Finkler 2000). Although advocating an important pre-cautionary approach, there are particular consequences in defining the parameters of a social science critique in this way. This approach to 'social impact' tends to mask the necessary involvement of multiple individuals and groups and the heterogeneous practices undertaken in the work of translation. It also obscures how the movement from or between the lab and the wider world has diverse and often contradictory consequences for those other than the relatively small group of persons undergoing genetic testing. Moreover focusing only on the downstream effects of these developments assumes that scientific knowledge is itself 'unified' and 'stable' (Irwin and Wynne 1996: 7).

The question of 'social impact' and 'geneticisation' are re-situated in this study in a number of different ways. This is achieved, in part, by extending the parameters for inquiry. But, as Layne puts it, this is not only or just about adding different perspectives but understanding 'where [and how] work is collaboratively performed' (1998). By attending to the reciprocal yet uneven exchanges caught up in the emergence of new genetic knowledge or technology, the questions these developments raise about agency, identity and power are located across a broader span of social relations. At the same time an ethnographic perspective allows moments of productivity and disjuncture to become more concretely located.

As a number of studies in this field have demonstrated, there is in addition also a need to consider these developments more reflex-ively, in a way that does not situate questions of the social only in relation to the 'downstream' consequences of scientific or medical innovation. Like others this book locates specific articulations of the social (and ethical) in the emergence of, rather than after, new genetic knowledge and technologies (Rabinow 1999;Franklin 2001a; Hayden 2003;Strathern 2004). It explores how in novel and legitimising ways social or ethical concerns, often refracted through idioms of female gender, are caught up and instrumentalised in the pursuit of scientific knowledge or the undertaking of predictive health care interventions.

These broader parameters for examining the question of social impact are used here to look at the dynamic interfaces between breast cancer activism and the communication, translation and dissemination of genetic knowledge and technologies associated with BRCA genes. This approach to the analysis of 'co-production' draws from a body of work in which there has recently been a cross disciplinary fertilisation of theoretical, conceptual and methodological approaches.

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