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: 1.09). 06/2000; 7(3):237-49. 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.

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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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    • "In addition, there is the responsibility of disseminating the information to other family members. Thus, similar themes of obligations and responsibility are also present in cancer genetics counseling clinics (Press et al., 2000; Hallowell, 1999). "
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    ABSTRACT: This study explores how family communication patterns and family scripts influence the dissemination of genetic information and the sharing of feelings about genetic inheritance in families of healthy women who have attended a cancer genetics risk clinic because of their family history of breast and, or ovarian cancer. Family scripts are sets of expectations, beliefs, and norms that assign meaning to patterns of interaction, connect generations and provide guidance for action. We conducted an exploratory, qualitative study at a major clinical and research cancer center in the United Kingdom from January through June 2000 approved by the hospital clinical research and ethics committees. Twenty-one semi-structured, in-depth interviews were conducted using a purposive sample of women coming to the cancer genetics risk clinic for the first time, supplemented by 5 months of participant observation. We identified several communication patterns: open and supportive; directly blocked, indirectly blocked, self-censored and use of third parties. Some family members shared their feelings and discussed ways of trying to avoid developing breast or ovarian cancer; for others disseminating information or just talking about inherited susceptibility for breast and, or ovarian cancer fell into the script violation category; still others tried to renegotiate their family scripts.
    Psycho-Oncology 05/2004; 13(5):335-45. DOI:10.1002/pon.745 · 4.04 Impact Factor
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