Breast cancer activism and consensus politics

Since the early 1990s 'lay' or 'patient' activism has had a profound and lasting impact in raising the public profile of breast cancer in Euro-American contexts (Kaufert 1998;Klawiter 2000, 2004). Although activism in relation to a range of health issues pertaining to women, particularly contraception and abortion, can be traced to the early 20th century (Weisman 1998), the recent upsurge in activities and interest in breast cancer is, in part, a legacy of the feminist politics of the 1970s and the successful lobbying activities of AIDS activist groups in the 1990s (Morgen 2002). Nevertheless, as Epstein points out, it is now the scope and reach of a culture of breast cancer activism which is informing and cross cutting the recent rapid growth in a diverse range of patient movements and lay groups active around the politics of health (2007).

On the one hand, the recent visibility of a culture of activism around breast cancer has helped shape state or government instigated preventative public health campaigns in relation to cancer education, particularly in the provision of mammography screening. Yet it has also itself been fuelled by these campaigns, as Lerner points out, women have been the main targets of these initiatives emphasising the importance of health awareness and early diagnosis (2001). This collectively produced 'preventative' health agenda continues to draw attention to the 'risks' for all women of a disease now framed as an 'epidemic' (Lantz and Booth 1998). This has also resulted in a substantial increase in the funding allocated to breast cancer research, particularly in the US (Anglin 1997; Epstein 2003). A similarly vocal if differently constituted alliance of breast cancer charities and support groups have begun to have an equally strong presence in the UK, raising the public profile of the condition and contributing to significant regulatory changes in the move towards a more 'patient centred' NHS (see Allsop etal. 2004).

However, a straightforwardly optimistic or superficial reading of the changes brought about by the increased public profile of breast cancer and women's health issues have been cautioned against by others (Treichler etal. 1998;Fosket etal. 2000;Klawiter 2000;Potts 2000). Longstanding public health campaigns raising awareness of breast cancer as well as new inclusionary agendas around scientific research and medical provision, targetted at women, often makes it difficult to distinguish between what counts as revolutionary change and what is co-option (Epstein 2003).

This, as a number of feminist commentators have long pointed out, makes it important to examine how agency or empowerment and conformity intersect in this and other health care arenas (Lock and Kaufert 1998;see also Ginsburg and Rapp 1995;Haraway 1991). It is not insignificant that since the mid 1990s notions of 'resistance', in the context of a culture of breast cancer activism, have shifted towards a sphere of more consensual based politics (Kaufert 1996;Myhre 2001). Moreover paradoxes abound in an arena where calls for collective awareness of the disease have also helped to ensure the management of risk and danger have become the 'burden' of individual women themselves (Clarke and Oleson 1999;Fosket et al. 2000).

The different cultures of breast cancer activism explored in this book reflect on these aspects of empowerment and agency in relation to developments in breast cancer genetics. Focusing on these specific arenas of activism raises new questions for social science inquiry. Such issues relate not only to the particular kinds of gender-inflexed modes of citizenship, that are emerging at this juncture, but also the way that gender comes to matter in relation to genetic knowledge and technologies.

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