Collective fear, individualized risk: The social and cultural context of genetic testing for breast cancer

Stanford University, Palo Alto, California, United States
Nursing Ethics (Impact Factor: 1.25). 06/2000; 7(3):237-49. DOI: 10.1177/096973300000700306
Source: PubMed


The purpose of this article is to provide a critical examination of two aspects of culture and biomedicine that have helped to shape the meaning and practice of genetic testing for breast cancer. These are: (1) the cultural construction of fear of breast cancer, which has been fuelled in part by (2) the predominance of a 'risk' paradigm in contemporary biomedicine. The increasing elaboration and delineation of risk factors and risk numbers are in part intended to help women to contend with their fear of breast cancer. However, because there is no known cure or foolproof prevention for breast cancer, risk designations bring with them recommendations for vigilant surveillance strategies and screening guidelines. We argue that these in effect exacerbate women's fears of breast cancer itself. The volatile combination of discourses of fear, risk and surveillance have significant ethical and social consequences for women's lives and well-being. Genetic testing decisions are made within this context; if nurses understand this context they can play an important role in helping women to cope with the anxiety and fear of breast cancer risk.

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    • "The new ‘molecular biopolitics' (Rose, 2007) engendered by the molecularisation of cancer screening technologies has been the focus of some interest among social scientists, although the majority of research to date has focused on genetic testing, especially in relation to the BRCA1/2 genes (for example, Polzer, 2000; Press et al, 2000; Gibbon, 2007; Gibbon et al, 2010). Such studies have shown that these predictive tests often serve to fundamentally alter people's experience of cancer risk. "
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    ABSTRACT: Over the past two decades, molecular technologies have transformed the landscape of cancer diagnosis, treatment and disease surveillance. However, although the effects of these technologies in the areas of primary and secondary cancer prevention have been the focus of growing study, their role in tertiary prevention remains largely unexamined. Treating this topic as a problematic to be conceptually explored rather than empirically demonstrated, this article focuses on the molecularisation of tertiary prevention, especially the growing use of molecular biomarkers to monitor disease recurrence. Taking a semiotic approach, I speculate on the potential meanings of molecular biomarkers for people living with and beyond cancer and suggest the meanings of these technologies may differ in important ways for those on both sides of the risk divide: that is, those 'at risk' for cancer and those living with realised risk. Although molecular biomarkers may intensify a sense of 'measured vulnerability', by indexing cancer's presence they may also prove reassuring. Moreover, as an invisible but ostensibly 'transparent' sign, in some contexts they appear to enable cancer survivors to challenge biomedical decision making. In the light of recent oncological debates about the value of these biomarkers in tertiary prevention, I conclude by suggesting that signs can never be reduced to their 'objective' biomedical denotation in spite of professional attempts to expunge meaning and value from care.
    BioSocieties 06/2013; 8(2):124-143. DOI:10.1057/biosoc.2013.6 · 1.26 Impact Factor
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    • "In the case of screening for breast cancer, women feel accountable for personally negotiating health risks and avoiding illness, even to the point of undergoing extreme procedures that may not be beneficial. Consistent with the restitution story line of " early detection equals prevention, " our informant Lydia chooses to dismiss public health statistics about breast cancer screening and views risk as the personal responsibility of individual women (Press et al. 2000). Consequently, Lydia was outraged when medical practitioners refused to perform a mammogram for her 28-year-old daughter. "
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    ABSTRACT: A study of breast cancer screening and treatment decisions suggests that risk understandings are influenced by the dominant illness narrative of restitution within Anglo-Western cultures. Restitution stories reflect the cultural values of personal responsibility and control in combating disease and returning to a life of normalcy. In the context of breast cancer, individuals seek restitution by following the dictums of biomedicine, which promotes early detection as prevention, aggressive treatment as cure, and reconstructive surgery as concealment. Our findings suggest that these risk understandings contribute to the consumption of health-care interventions that exceeds medical guidelines in this country. (c) 2008 by JOURNAL OF CONSUMER RESEARCH, Inc..
    Journal of Consumer Research 02/2008; 34(5):579-594. DOI:10.1086/520078 · 3.10 Impact Factor
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    • "This is a method that has been utilised in many health areas to increase attendance at mammography and screening clinics and as a result this has made many women fearful of breast cancer (Press et al. 2000: 240). This was achieved through the use of terms such as 'epidemic', 'death', 'suffering' and through the portrayal of images of women 'suffering' from the disease and references to the 'ordeals' of treatments such as 'slash, burn and poison' (Fitts 1999: 4; Press et al. 2000: 240). "
    01/2006, Degree: Bachelor of Public Health (Hons), Supervisor: Dr Virginia Dickson-Swift
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