Mammography screening and trust: The case of interval breast cancer Marit Solbjør a, * , John-Arne Skolbekken b , Ann Rudinow Sætnan c , Anne Irene Hagen d , Siri Forsmo a a Norwegian University of Science and Technology, Medical Faculty, Department of Public Health and General Practice, Postbox 8905, MTFS, 7491 Trondheim, Norway b Norwegian University of Science and Technology, Department of Social Work and Health Sciences, 7491 Trondheim, Norway c Norwegian University of Science and Technology, Department of Sociology and Political Science, 7491 Trondheim, Norway d Department of Breast and Endocrine Surgery, Trondheim University Hospital, Trondheim, Norway article info Article history: Available online 4 August 2012 Keywords: Norway Trust Mammography Screening Interval breast cancer Qualitative study abstract Interval cancer is cancer detected between screening rounds among screening participants. In the Norwegian Breast Cancer Screening Programme, 19 per 10,000 screened women are diagnosed with interval cancer. We conducted semi-structured interviews with 26 such women. The women interpreted their interval breast cancer in two ways: that mammography can never be completely certain, or as an experience characterized by shock and doubts about the technology and the conduct of the medical experts. Being diagnosed with interval cancer thus influenced their trust in mammography, but not necessarily to the point of creating distrust. The women saw themselves as exceptions in an otherwise beneficial screening programme. Convinced that statistics had shown benefits from mammography screening and knowing others whose malignant tumours had been detected in the programme, the women bracketed their own experiences and continued trusting mammography screening. Facing a potentially lethal disease and a lack of alternatives to mammography screening left the women with few options but to trust the programme in order to maintain hope. In other words, trust may not only be a basis for hope, but also a consequence of it. Ó 2012 Elsevier Ltd. All rights reserved. Introduction National mammography screening programmes are common in western countries (Holland, Stewart, & Masseria, 2006). The ratio- nale for providing mammography screening is that breast cancer is the most common and most mortal cancer for women in the western world, for instance in Norway (Cancer Registry of Norway, 2007). Screening offers reduced mortality and morbidity, which would benefit society, as well as individuals. Benefits of breast cancer screening are, however, contested (Autier et al., 2010; Kalager, Zelen, Langmark, & Adami, 2010). The societal value of screening is extrapolated to the population level from sample- based studies and can only be achieved if a large majority of the targeted population chooses to participate. For the participating women the value of screening remains an individual matter, based on their personal experience and those of their social network. For the individual, screening could lead to longer survival, but also to over-diagnosis of cancer or have no effect at all. Since participation is voluntary, it is each individual who must weigh the pros and cons and decide whether participation is right for her. However, participation does not necessarily indicate knowledge of all aspects of screening. Women who experience a recall might be surprised (Solbjør, Skolbekken, Sætnan, & Forsmo, 2011), and women who are diagnosed with ductal carcinoma in situ after mammography screening may feel ill-informed about the possibility of having an “uncertain” cancer diagnosis (Prinjha, Evans, & McPherson, 2006). Potentially, having cancer between screening rounds might also come as a surprise to screening participants. The question addressed in this article is how such experiences might influence attitudes towards screening, and thereby participation. Participation is associated with cancer risk assessments and cultural beliefs about the benefit of early detection (Denberg, Wong, & Beattie, 2005; Pfeffer, 2004), but non-calculated elements may also play a role. Even when sensitive to its uncer- tainties, the x-ray technology offering images of the internal body has a persuading effect towards beliefs in mammography’s ability to detect cancer (Griffiths, Bendelow, Green, & Palmer, 2010; Solbjør, 2008) Beliefs in the benefit of mammography screening could also come from informational material distributed by screening programmes, which has been criticised for being biased in favour of screening (Gummersbach et al., 2010; Jorgensen & Gotzsche, 2006). Moreover, discourses of biomedicalization e where breast cancer is understood as a continuum instead of as the dichotomy of well-ill e position all women at risk for breast cancer. * Corresponding author. E-mail address: Marit.Solbjor@ntnu.no (M. Solbjør). Contents lists available at SciVerse ScienceDirect Social Science & Medicine journal homepage: www.elsevier.com/locate/socscimed 0277-9536/$ e see front matter Ó 2012 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.socscimed.2012.07.029 Social Science & Medicine 75 (2012) 1746e1752