Breast Cancer Research Charity Science Activism and the Quest for Knowledge

Chemo Secrets From a Breast Cancer Survivor

Breast Cancer Survivors

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Moving outside the clinical arena and the specific dynamic between patients and practitioners, the second half of this book examines the knowledge and technology associated with breast cancer genes in relation to a very different science/society interface. Informed by the idea that the viability of scientific research is inseparable from social or institutional organisations and relations (Fujimura and Clarke 1992) and their particular 'scientific-body language' (Wynne 1991), Chapters 5-7 explore the dynamic interface between gendered health activism and the BRCA genes in the context of a breast cancer research charity in the UK.

Although the boundaries between charity, patient organisations, state institutions and corporate interests are increasingly often difficult to separate (King 2001;Allsop etal. 2004), UK charities are one of the major sources of funding for cancer research, with a long and highly successful history. Several large cancer charities have had a major if not the primary influence in overseeing cancer research in this country through the 20th century. As Austoker notes in her historical study of one of these charities (now merged with another major UK cancer charity) the ICRF (Imperial Cancer Research Fund), from its inception in the 1930s to the mid-1980s, was, like other large cancer charities, given a 'mandate by the public to dictate the pattern and direction of research' (1988: 317). She points out how this has had a significant effect not only on the funding of cancer research, with correspondingly low input of government funds into cancer research, but also on the co-ordination of such research. Although there are over 600 much smaller cancer research charities in the UK (Walker 2000), the field of charitably funded cancer research is dominated by a few major organisations whose scale of operation is 'comparable with that of most commerical firms' (Austoker 1988: 318). As Porter notes, there have been comparable kinds of relationship between science and publics throughout the course of the 20th century, illustrated in the campaigns against TB and Polio (1997: 694). Nevertheless the 'war' on cancer has proved to be not simply a resilient cultural metaphor in relation to cancer (Sontag 1991) but also a reflection of sustained public support and investment in cancer research. When, as Karakasidou points out, the disease itself is constituted as a 'subversion of modernity' (2005) it is perhaps not suprising to find that the science of cancer research has been, and in many ways continues to be, situated as a 'modernist' project, articulated in terms of quest for a 'cure' (see Lowy 1997).

In the UK the character of this 'war' on cancer, through scientific research, and the nature of public support in fighting it, has been and continues to be refracted and forged through the history and social institution of charity. As this chapter illustrates, it is an institutional context for cancer research which has wide-ranging consequences for the kinds of public/science relations that characterise the social dynamics surrounding breast cancer genetics.

Scientific research focused on breast cancer has come to occupy an increasingly prominent space in cancer research over the last 15/20 years, partly in response to the burgeoning growth in gendered health activism around the disease. This has also led to the proliferation and expansion of breast cancer organisations in the UK. Some of these cater to the varying and different needs of those with breast cancer, or their family and friends, while others participate in lobbying parliament, increasing patient advocacy or fundraising for research. All are active in raising awareness about breast cancer, embodied in the now annual international event, Breast Cancer Awareness Month. This event which been running since the early 1990s, marked by the selling of 'pink ribbons', has now come to constitute something of a consumer industry. As King points out, these developments index the success of a range of breast cancer organisations, and highlight the increasingly dense interconnections between cancer research, corporate philanthropy and raising funds for charity as an individual 'lifestyle choice' (2001).

In general specific support and information for those at risk of breast cancer because of their family history or for those found to be carrying a BRCA gene mutation was and continues to be subsumed within the broad remit of an array of breast cancer charities. In the UK there are no specific organisations aimed exclusively at those identified as being at increased risk because of their family history or as a result of predictive genetic testing;a situation which makes evident the need to explore the wider bio-social terrains which BRCA genetics are implicated in and which they are also helping to inform. There is however a breast cancer charity in the UK which, at the same time as being very much part of the heightened public profile of breast cancer, has a particular space within the institutional culture of charitable research and also the field of genetic science and knowledge. This is not just because of the organisation's somewhat unique 'grass roots' identity but also because of its single disease focus on breast cancer research, as opposed to immediate practical 'care' for those with the disease. Although the stated long-term goal is in developing 'treatments' for breast cancer the research it has funded, from its inception, has been orientated towards 'basic' science. This has included, although not been totally defined by, research on the BRCA genes. This is part of a programme of research which is collectively orientated towards finding out more about the 'biology of the breast', in working towards what is described as a future 'free from the fear of breast cancer'.

Originally set up in 1991 in response to what was seen as lack of focused research on breast cancer by the family of a woman who had died of the disease, the charity has been highly successful in recruiting support and securing financial backing for its cause from the public, the broader cancer research establishment, but also other major corporate funders. This has lead it to become a national organisation with numerous fundraising branches across the country and enabling it to meet the target of raising £15 million to build the first dedicated breast cancer research centre within the short space of 10 years. The rapid rise and expansion of the charity to become one of a handful of extremely successful cancer charities in the UK with a national profile is a product of and testament to the way it has succeeded as a research charity focusing on basic science but with a something of an 'activist' identity - a model which, until fairly recently, had been unique in terms of cancer research in the UK.

It is not insignificant that the growth and success of the organisation, particularly from the mid- to late 1990s, has coincided not just with the expansion of breast cancer activism but with the identification of the BRCA genes. As I explore in subsequent chapters the 'hype' and 'hope' that built up around these 'discoveries' and the larger international project to identify and sequence all the genes in the human body, although a feature of a diverse set of public, scientific and social science discourse at this time, has also informed the work of the organisation in particular ways. At the time of my research in 1999 to early 2001 there were a number of different teams working in the research centre. However a number of high profile groups were focusing on investigating the function of the BRCA genes and in fact several key members of the current research teams funded by the charity, were involved in the work that identified the BRCA2 gene. Although the type of research undertaken by the charity has now expanded well beyond a focus on BRCA genes per se, its work continues to be directly associated with long-term basic science research examining the 'molecular pathways' thought to be involved in developing breast cancer.

The second half of the book examines therefore the work of transmission and translation of genetic knowledge and technology in a domain outside the clinical setting by exploring the social and cultural dynamics that constitute one particular high profile breast cancer research charity in the UK. This journey out of the clinic towards specific 'sciences' and 'publics' highlights how seemingly disparate arenas are caught up in mutually evolving ways in the co-production of breast cancer genes.

Chapters 5-7 map the matrix of social relations that constitute one particular breast cancer research charity exploring the connections that work to reproduce, as well as the challenges to sustain, an alignment between fundraising, genes and the pursuit of and quest for scientific knowledge of breast cancer.

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