Breast Cancer Activism in the United States and the Politics of Genes

Abstract

Perhaps no other medical advocacy movement has been as successful as breast cancer advocacy in increasing awareness and funds. Recent decades have seen a division between a “green” environmental advocacy aimed at prevention and a “pink” advocacy focused on fund-raising for a cure. The movement has largely failed to address the implications of corporate control over genetic testing, as reflected by the involvement of only one breast cancer organization in the lawsuit against Myriad Genetics Laboratory, which held patents on the BRCA 1/2 genes. This article argues that the reason for this failure is an unwillingness to challenge the role that corporations play in advocacy.

The shifting politics of patient activism: From bio-sociality to bio-digital citizenship

“…They used public forums to develop a profile for a disease – arguably now ‘the biggest disease on the cultural map’ (Ehrenreich, 2001) – that previously was not spoken about in public (Lerner, 2002; Sulik, 2014). Feminism and the women’s health movement were instrumental in changing the way breast cancer was portrayed by creating a social environment in which the disease could be discussed freely as well as challenging the male, medical dominated paradigms by which this disease was originally treated and, thus, often hidden (Ehrenreich, 2001; King, 2004; Lerner, 2002; McHenry, 2015). Breast cancer activism also took its cue from the 1980s and early 1990s HIV/AIDS activist movements that were seen to have been successful in pressing their claims (Potts, 2001).…”

“…However, from the outset, breast cancer activism has been characterised by conflicting goals and strategies. No single narrative encapsulates the breadth and diversity of breast cancer activism (McHenry, 2015). However, the most well-known and ‘mainstream’ form of breast cancer activism is epitomised by pink ribbon culture, which focuses on building the community’s profile, early detection especially through screening and fundraising for biomedical research with the hope of finding a cure.…”

“…It is in this context, King (2004) suggests that pink ribbons became a ‘symbol of hope’, used to attract philanthropic support, the supply of which ensures that the ‘fight’ against the disease remains an unqualified success. ‘Green’ or environmental breast cancer activism, on the other hand, provides a challenge to the dominance of pink ribbon culture and the way it operates, focusing less on individual experiences of survivorship and ‘cures’ and more on prevention and the possible environmental causes of the disease (McHenry, 2015).…”

“…Contemporary feminists within and outside breast cancer activist communities have tried to encourage a shift in priorities from the key focus being screening, treatment and a cure to focusing on prevention (Ehrenreich, 2001; Potts, 2001). Critics of mainstream breast cancer activism argue that there is not enough focus on the prevention of the disease and on social and environmental causes such as pesticides and other pollutants (Ehrenreich, 2001; King, 2004; Lerner, 2002; McHenry, 2015; Pitts, 2004; Radin, 2006). It is also argued that pink ribbon culture conflicts with many of the principles of feminism in its connotations.…”

“…This deepening entanglement of corporate interests with patient community interests, especially in regard to co-hosting events to attract funding and the sharing of marketing strategies, is not without its critics. Some within the breast cancer community, for example, have labelled the model of activism that draws support from the business sector as ‘pinkwashing’ – a term modelled on ‘whitewashing’, to indicate how attention is diverted from the insidious aspects of an industry – which leads the public to assume that the company in question is donating a significant amount of their profits towards breast cancer activism (Landman, 2008; McHenry, 2015; Selleck, 2010; Sulik, 2014). This pinkwashing, it is argued, may lead the public to believe that by supporting a pink-branded product, they are doing something significant to combat breast cancer, whereas in fact they are mainly boosting the profits of the company, given the small proportion of proceeds that are customarily donated per pink-branded item.…”