Attitudes to genetic testing for breast cancer susceptibility in women at increased risk of developing hereditary breast cancer

Abstract

Editor—The localisation of the two breast cancer susceptibility genes BRCA1 and BRCA2 made possible the use of mutation detection as a susceptibility test for people who wish to learn whether they carry a risk conferring mutation.1-4 Several studies have assessed attitudes to genetic testing for breast cancer susceptibility,5-11 most of which involved either community samples or women with just one first degree relative with breast cancer. The objective of our study was to assess attitudes to genetic testing for breast cancer susceptibility in a large sample of women at high risk of developing hereditary breast cancer on the basis of family history. The majority of women included in our sample (80%) had a family history consistent with a dominantly inherited predisposition to breast cancer (lifetime risk of 1 in 4 to 1 in 2),12 and the remainder (20%) was at moderately increased risk of developing breast cancer (lifetime risk of 1 in 8 to 1 in 4).12 The findings reported here are based on a sample of 461 unaffected women with a family history of breast cancer. Women who approached one of 14 familial cancer clinics and six associated outreach clinics in five Australian states between November 1996 and January 1999 were eligible for participation. Women were considered ineligible for study participation if they had a previous diagnosis of ovarian or breast cancer, were unable to give informed consent, or had limited literacy in English, since data were collected using self-report questionnaires. The study was approved by 16 institutional ethics committees. Familial cancer clinic staff invited women to participate in the study during the preclinic telephone call, where possible. Questionnaires, consent forms, and reply paid envelopes were then mailed out by the coordinating research centre. Women were subsequently telephoned by the central research staff …