chapter  3
Anticipating Prevention: Constituting Clinical Need, Rights and Resources in Brazilian Cancer Genetics
BySAHRA GIBBON
Pages 18

The ubiquitous promise of personalized medicine associated with developments in genetic research, including the fi eld known as breast cancer genetics, has long been grounded in an assumption that this knowledge will facilitate the movement towards individualized and targeted treatment based on knowing a person’s genotype. Despite emerging possibilities for using knowledge of the two well-known inherited susceptibly genes, BRCA 1 and 2, in the treatment of sporadic cancers (see Bourrett, Keating & Cambrosio, 2014), this promise has been limited for the most part to the possibility of providing a personalized risk susceptibility estimate based on genetic testing to detect mutations on these genes. The normalization of the anticipatory habitus (Joseph, 2014) associated with predictive interventions related to new fi elds of clinical intervention such as breast cancer genetics is refl ected in the growing incorporation of genetic testing for breast cancer as a standard of care across diverse fi elds of public and private health care, particularly in North America and Europe (see Gibbon et al., 2014). The announcement in 2013 by actress Angelina Jolie that she had undergone a prophylactic mastectomy following a positive result for a mutation on the BRCA genes provides a striking and very public example of this rationality in action, which as this chapter will illustrate, continues to have repercussions in many diverse cultural contexts, indirectly and directly informing the expansion of predictive interventions for cancer. 1

The terrain on which genetics operates means that the promise of personalized medicine now coexists alongside an emerging fi eld of public health genomics (Bauer, 2013; Brand, Brand, & in den Bäumen, 2008; Taussig & Gibbon, 2013). This is changing the boundaries of how and where genetic knowledge is being made relevant to health care as well as the parameters of what is described as a preventative approach to cancer. Genomic research is now directly tied to large-scale epidemiological studies for communicable as well as noncommunicable diseases. At the same time, newer and faster sequencing techniques and technologies, which enable thousands of mutations to be rapidly identifi ed, are informing and propelling novel terrains of genetic and epigenetic research in relation to cancer and other diseases. Questions of human biological variation and population differences have

also reemerged in recent years as central to, if problematic and evolving dimensions of, public health genomics. Some suggest that the turn to public health is about reenergizing a fi eld of science that has failed to live up to expectations (Whitmarsh, 2013), helping to extend its importance and relevance (Lindee, 2013). However, as Karen Sue Taussig and I note elsewhere, also of signifi cance is the “social action set in motion by researchers seeking to translate genomic knowledge and technologies into public health” (Taussig & Gibbon, 2013, p. 3).