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BRCA patients in Cuba, Greece and Germany: Comparative perspectives on public health, the state and the partial reproduction of ‘neoliberal’ subjects

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Abstract

The relationship among genetic technologies, biosocial identity and patient subjectivity has been the focus of an increasing range of social science literature. Examining mainly European and North American contexts this work has demonstrated the variable configurations of genetic knowledge-practices and the diverse implications for at-risk individuals and populations. This article brings together ethnographic research on genomic medicine, public health and breast cancer in Cuba, Greece and Germany. Although each case study addresses different publics/patients, institutional settings and risk-related practices, they all critically examine ‘neoliberal’ subjectivity and BRCA patienthood, at the intersection of political rationalities, medical discourses, social conditions and moral codes. In the Cuban case, cultural articulations of inherited and other embodied risks relating to breast cancer are analysed in relation to state provision of ‘community genetics’, and the shifting dynamics of public health in response to global social processes. The Greek case explores how culturally embedded values, notions of inherited risk and care inform or are re-articulated through institutional practices and ambivalent subject positions, at the meeting point between individualised medicine, religious philanthropy and the particularities of public health. In the German context, diverging patient subjectivities are examined against the background of prevailing social discourses and institutionalised risk management practices that promote proactive individuality. Drawing on deconstructive and feminist analyses, these case studies reveal how normative ‘neoliberal’ patient subjects are only ‘partially reproduced’ in situated contexts, neither stable nor homogeneous, as different actors and publics variously articulate, embrace or engage with transnational as well as culturally embedded discourses and health practices.

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Notes

  1. In his lecture presented to a French audience in 1968, Derrida intentionally misspelled the word to show that although the pronunciation does not change in French, the meaning integrates a difference which is not initially obvious but suspended for later (until read) (1982).

  2. In a recent work Derrida (2005) refers to the challenges of technoscientific developments with respect to the workings of power in modern democracies. He contends that genetic technologies promote the rhetoric of reproduction, as in the case of genetic engineering, despite the impossibility of such iteration and calls for critical examination of the invested moral orders and political ideologies.

  3. The data explored here are drawn from research working with community genetic health professionals exploring perceptions of disease risk (including genetic risk) linked to breast cancer among Cuban publics. Alongside ethnographic research, a questionnaire was undertaken with healthy women and those affected by breast cancer in three regions of the country, all outside of Havana. Healthy women and those with breast cancer were invited to participate by Cuban health professionals in the areas where the research was undertaken. Using open and closed questions participants were asked about their health beliefs regarding the causes of breast cancer, including genetic and non-genetic risk factors.

  4. In fact explicit discussion of this possibility arose a number of times whilst completing the questionnaire when the woman mentioned seeing foreign news reports about genetic testing in families for breast cancer.

  5. This study was conducted by Eirini Kampriani for the purposes of her PhD, Department of Anthropology UCL. Fieldwork research was funded by the Wenner-Gren Foundation for Anthropological Research (Dissertation Fieldwork Grant No: 7411); financial support was also provided at an initial stage by the UCL Graduate School (Research Fund).

  6. Fieldwork research was conducted mainly in the broader area of Halkidiki, in Northern Greece, and a shorter part in the urban setting of Athens. Anthropological research methods included both observations and daily interactions in different settings (clinical, social, charity) and interviews with women with family histories of breast cancer, scientists and practitioners.

  7. See Kampriani (2009) for a discussion of the interfaces between religious philanthropy and breast cancer genetics in Greece, with reference to institutional practices and the social dynamics within which they are embedded.

  8. Screening programmes implemented by the centre follow the guidelines of the European and international funding projects. The programme on hereditary breast cancer detection, in particular, was initiated as the first stage of a broader project aiming to provide BRCA genetic testing free of charge to women identified as high-risk, in its full implementation.

  9. Research was funded by the DFG post-graduate college ‘Technology and Society’ and conducted by Andrea zur Nieden. The study included analysis of medical publications and guidelines, hand-outs of the German Consortium, genetic counselling sessions and also in-depth interviews with genetic counsellors and other staff as well as with women who had undergone genetic testing (see zur Nieden, 2008). Latter interviews were held at least one year after women received the test result. Women had different test results: positive (mutation was found), negative (mutation was found in the family, but they were non-carriers) or inconclusive results. None of the women had cancer themselves.

  10. Some of these research results have already been discussed elsewhere with a different focus (zur Nieden, 2009, 2010).

  11. In Germany, annual gynaecological check-ups are recommended to all woman, with gynaecologists being the specialists for specific ‘female’ health problems and questions of female sexuality and reproduction. This form of gendered medicine and health service in which the male appears as the norm model and the female as the deviation that needs additional treatment has only recently been supplemented by the discipline of ‘andrology’ (Wöllmann, 2007), and services of urology for men are still far from being routine.

  12. For a more detailed evaluation of the informative material and account of the counselling sessions, see zur Nieden (2005, 2007).

  13. The payment for follow-up measures like intensified screening are always a means of negotiation if women from ‘high-risk-families’ decide not to take a test.

  14. The described types emerged from the data through a grounded theory process of analysing and comparing the individual cases along certain dimensions such as ‘relationship to doctors’ and so on, as suggested by Kelle and Kluge (1999). The types can be seen as empirical and not ‘ideal’ types, as all interviewed women fell into these categories, although there were certainly many individual nuances.

  15. All interview quotes are translated by the author from the German original.

  16. Certainly, because of the qualitative approach and small number of interviews it is not possible to draw significant correlations between social variables and outcome.

  17. For more elaboration on this point, see zur Nieden (2010).

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Acknowledgements

We are grateful for the insightful comments on earlier versions of this article from Galen Joseph, Ute Kalender, Jessica Mozersky and Sonja Palfner, as well as the anonymous reviewers who provided helpful critique and constructive commentary.

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Authors and Affiliations

  1. Department of Anthropology, University College London, 14 Taviton Street, London, WC1H OBW, UK

    Sahra Gibbon & Eirini Kampriani

  2. Institut für Geschichte der Medizin, Heinrich-Heine-Universität Düsseldorf, Postfach 10 10 07, Düsseldorf, D-40001, Germany

    Andrea zur Nieden

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  1. Sahra Gibbon
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Correspondence to Sahra Gibbon.

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Gibbon, S., Kampriani, E. & Nieden, A. BRCA patients in Cuba, Greece and Germany: Comparative perspectives on public health, the state and the partial reproduction of ‘neoliberal’ subjects. BioSocieties 5, 440–466 (2010). https://doi.org/10.1057/biosoc.2010.28

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