Reassurance through surveillance in the face of clinical uncertainty: the experience of women at risk of familial breast cancer

OBJECTIVE: To identify the main issues raised by clinicians when they are counselling women at risk of breast cancer and explore the response of a group of women 1 year after counselling. DESIGN: A qualitative study which involved the thematic analysis of a series of transcripts from clinical consultations, semi-structured interviews and focus groups. PARTICIPANTS: First, a series of clinical consultations (n=153), involving seven clinicians, were randomly selected during a Medical Research Council funded study of genetic assessment (TRACE). Second, a group of women (n=43), involved in the TRACE study, were interviewed, or joined a focus group, 1 year after their genetic assessment. CONCLUSIONS: There was evidence that, although the clinical consultations were embedded with multiple messages of uncertainty, the women's accounts did not reflect this. The women talked about the reassurance they had found because they had met with an expert and become members of the surveillance society. The authors highlight the tension that exists because of the difference between lay expectations about on-going surveillance and the realities of collective service provision.