Collective Fear, Individualized Risk: the social and cultural context of genetic testing forbreast cancer

ArticleinNursing Ethics 7(3):237-49 · June 2000with9 Reads
DOI: 10.1177/096973300000700306 · Source: PubMed
Abstract
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.
    • "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. "
    [Show abstract] [Hide abstract] 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.
    Full-text · Article · Jun 2013
    • "Though some work has been done in the public health context, particularly in the field of environmental/ecological risk, we have not seen a comparable application of ethnographic narrative analytics to understanding risk with respect to cancer screening. While others have focused on the relationships between risk and genetic potential I would suggest that cancer screening is the site of similar challenging uncertainties (Press, Fishman et al. 2000). New technologies, like the SDT-2 fecal DNA test that may supersede Fecal Occult Blood Testing (FOBT) for detecting colorectal cancer, could increase accuracy and be less invasive than other modalities such as colonoscopy. "
    [Show abstract] [Hide abstract] ABSTRACT: A core logic of cancer control and prevention, like much in public health, turns on the notion of decision-making under conditions of uncertainty. Population-level data are increasingly used to develop risk profiles, or estimates, that clinicians and the consumer public may use to guide individual decisions about cancer screening. Individual risk perception forms a piece of a larger social economy of decision-making and choice that makes population screening possible. Individual decision-making depends on accessing and interpreting available clinical information, filtered through the lens of personal values and both cognitive and affective behavioral processes. That process is also mediated by changing social roles and interpersonal relationships. This paper begins to elucidate the influence of this "social context" within the complexity of cancer screening. Reflecting on current work in risk and health, I consider how ethnographic narrative methods can enrich this model.
    Full-text · Article · Apr 2010
    • "(Schulman and Stern 1996, p.245) Of course, this same episode has also been the subject of intensive scrutiny over the intervening years with interesting lessons for today's marketing of consumer genomics. As this research points out, creating a " rights-based " demand for information that is difficult to interpret and psychosocially potent can yield confusion about both the risks being described and the responsibilities they entail (Novas and Rose 2000, Press et al. 2000, Lemke 2004, Matloff and Caplan 2008). As McGowan and Fishman point out, As the consumer base for these [consumer genomic] services is undefined at the moment, it will be important to interrogate how . . . "
    [Show abstract] [Hide abstract] ABSTRACT: Recently, a high number of companies have emerged that offer online direct-to-consumer DNA testing. We investigate these consumer genomics companies through the lens of identity. We find that many of them appeal to a kind of “genetic essentialism”. We suggest that this appeal is key to understanding why consumers are attracted to their services. There seem to be three very different currents within contemporary culture at work: the pre-modern search for a naturalistic understanding of identity, the modern enthusiasm for science, and the post-modern emphasis on radical individual self-determination. The support for our hypothesis comes from the companies' websites and the online testimonials of satisfied customers. We discuss the risk of distortion of the subjective experience of identity due to unreliable or uninformative test results, inadequate or misleading explanation, and the fact that the science is still too weak to yield meaningful results.
    Full-text · Article · Jun 2009
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