In this paper we explore the rise of ‘the breast cancer gene’ as a field of medical, cultural and personal knowledge. We address its significance in the Norwegian public health care system in relation to so-called biological citizenship in this particular national context. One of our main findings is that, despite its claims as a measure for health and disease prevention, gaining access to medical knowledge of BRCA 1/2 breast cancer gene mutations can also produce severe instability in the individuals and families affected. That is, although gene testing provides modern subjects with an opportunity to foresee their biological destiny and thereby become patients in waiting, it undoubtedly also comes with difficult existential dilemmas and choices, with implications that resonate beyond the individual and into different family and love relations. By elaborating on this finding we address the question of whether the empowerment slogan, which continues to be advocated through various health, BRCA and breast cancer discourses, reinforces a naïve or an idealized notion of the actively responsible patient: resourceful enough to seek out medical expertise and gain sufficient knowledge, on which to base informed decisions, thereby reducing the future risk of developing disease. In contrast to this ideal, our Norwegian informants tell a different story, in which there is no apparent heroic mastery of genetic fates, but rather a pragmatic attitude to dealing with a dire situation over which they have little control, despite having complied with medical advice through national guidelines and follow-up procedures for BRCA 1/2 carriers. In conclusion we claim that the sense of safety that gene testing and its associated medical solutions allegedly promise to provide proved illusory. Although BRCA-testing offers the potential for protection from adverse DNA-heritage, administered through possibilities for self-monitoring and self-management of the body, the feeling of ‘being in good health’ has hardly been reinforced by the emergence of gene technology.
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We wish to thank the three women who contributed their illness stories to the ‘I am not the same’-study. Stavanger Breast Cancer Research Group at Stavanger University Hospital (SUS) approved use of data from the study above. Funding for this research was partly provided by Folke Hermanson Cancer Research Foundation and Inge Steensland Foundation, Stavanger, Norway. We are grateful for the assistance of senior Consultant/researcher Anne Irene Hagen at St.Olav’s Hospital in identifying the year that predictive BRCA gene testing commenced in Norway, and Hildegunn Høberg-Vetti at Haukeland University Hospital for up-to-date information about hereditary breast cancer prevalence in Norway. We also wish to thank Head of Section at the Department at Breast and Endocrine Surgery at SUS, Tone Hoel Lende, MD, for her contributions on the clinical context for BRCA councelling and treatment during an early discussion of our topic in 2015. Pål Krøger, MD, Head of the Department of Plastic Surgery at SUS, provided reflections on clinical experience with immidiate breast reconstruction.
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Solbrække, K.N., Søiland, H., Lode, K. et al. Our genes, our selves: hereditary breast cancer and biological citizenship in Norway. Med Health Care and Philos 20, 89–103 (2017). https://doi.org/10.1007/s11019-016-9737-y