Attitudes towards cancer predictive testing and transmission of information to the family.

Abstract

Material and methods POPULATION SAMPLEThe six participating regional cancer centres were selected with a view to giving a representative picture of the French population as a whole (south: Marseille, Toulouse; north: Lille; west: Nantes; centre: Paris/St Cloud, Clermont-Ferrand) and covered a total population of more than 4 million inhabitants. The main criterion used for inclusion in the study was the presence of breast cancer running in the family, either in the patient or in at least one first degree relative when she was not affected herself. All the healthy cases included had at least one first degree relative with breast cancer. All the affected ones had a first degree relative with cancer and when the consultand herself was not affected she had at least one first degree relative who was. The consultands were female adult cancer patients and healthy patients who were asked to participate when attending the cancer genetic clinics for the first time between January 1994 and January 1995. CONSULTANDS' QUESTIONNAIRESThe consultands were mailed a standardised questionnaire (with a stamped envelope) during the week after the consultation. If no answer was received within two weeks of the first letter, a reminder was sent, followed after a second period of two weeks by a complete package (letter, questionnaire, and stamped envelope). The questions asked about the attitudes towards breast cancer predictive testing are given in the appendix.Both open ended and closed questions were used to enquire about the transmission of information to relatives about the family cancer risk, how this information was received,

Factors Determining Dissemination of Results and Uptake of Genetic Testing in Families with Known BRCA1/2 Mutations

“…This supports previous data that suggest that, despite counseling efforts, mutation carriers describe decreased disclosure to relatives with whom affected individuals have difficult or distant relationships (Julian-Reynier et at., 1996;Green et al, 1997;Hughes et al, 2002;Forrest et al, 2003;McGivem et al, 2004), or with whom there is an FDR available to discuss positive family results (Claes et al, 2003;Peterson et al, 2003;McGivern et al, 2004). In this family context, it is concerning that a person several times removed from the actual genetic counseling process provides genetic risk information to other family members, potentially distorting the content of the transmitted information.…”

Utilization of BRCA1/2 genetic testing in the clinical setting

“…Before the availability of clinical testing, various studies in breast carcinoma patients, 14 healthy family members of breast or ovarian carcinoma patients, 8 -12 and the general population [13][14][15][16] have reported high level of interest in BRCA1/2 genetic testing, ranging from 69% to 96%. 8,9,[11][12][13][14]16,30,31 Since genetic testing for BRCA1/2 became available, there have been few published studies on the actual utilization of testing in clinical practice. 18 Only one-quarter of patients who were eligible to consider testing in our clinical population eventually were tested or arranged to have an affected family member tested.…”

Predictive testing for hereditary breast and ovarian cancer: a psychological framework for pre-test counselling

“…Julian-Reynier et al 57 reported that about 14% of 161 patients who had been asked to contact their relatives, firmly refused to do so, mainly because of problematic familial relationships. Other significant barriers to informing family members are guilt, shame, anxiety or depression.…”