Psychosocial issues raised by a familial ovarian cancer register

Abstract

A Familial Ovarian Cancer Register has been established which has recruited primarily through media publicity. In depth semi-structured interviews were carried out with 20 women who had volunteered in order to explore (1) knowledge about the disease, (2) motivations for contacting the Register, and (3) expectations. We found that interviewees were generally well informed about the symptoms of the disease as a result of their relatives' experiences. There was, nevertheless, a need for information which the Register was seen as potentially fulfilling, although most subjects gave altruistic reasons for volunteering. Only one interviewee said that the publicity about the Register had made her more anxious. Most said that their anxieties had not been affected either way by the Register. Subjects did not have a clear idea of what being on the Register would mean, although there was an expectation of screening for early signs of the disease. Many interviewees had models of familial disease which did not follow mendelian genetics. This has implications for the targetting of education and screening programmes. Other psychosocial issues raised by a register of this kind are discussed, many of which require continuing monitoring to ensure that the psychological costs do not outweight the benefits.