"For all my family's sake, I should go and find out": an Australian report on genetic counseling and testing uptake in individuals at high risk of breast and/or ovarian cancer.
BACKGROUND
Despite proven benefits, the uptake of genetic counseling and testing by at-risk family members of BRCA1 and BRCA2 mutation carriers remains low.


OBJECTIVE
This study aimed to examine at-risk individuals' reported reasons for and against familial cancer clinic (FCC) attendance and genetic testing.


METHODS
Thirty-nine telephone interviews were conducted with relatives of high-risk mutation carriers, 23% (n = 9) of whom had not previously attended an FCC. Interview responses were analyzed using the frameworks of Miles and Huberman.


RESULTS
The reasons most commonly reported for FCC attendance were for clarification of risk status and to gain access to testing. While disinterest in testing was one reason for FCC nonattendance, several individuals were unaware of their risk (n = 3) or their eligibility to attend an FCC (n = 2), despite being notified of their risk status through their participation in a large-scale research project. Individuals' reasons for undergoing testing were in line with that reported elsewhere; however, concerns about discrimination and insurance were not reported in nontestees.


CONCLUSIONS
Current guidelines regarding notifying individuals discovered to be at increased risk in a research, rather than clinical setting, take a largely nondirective approach. However, this study demonstrates that individuals who receive a single letter notifying them of their risk may not understand/value the information they receive.
School of Women's and Children's Health, University of New South Wales, Sydney, Australia. c.wakefield@unsw.edu.au
Claire E
CE
Wakefield
Paboda
P
Ratnayake
Bettina
B
Meiser
Graeme
G
Suthers
Melanie A
MA
Price
Jessica
J
Duffy
Kathy
K
Tucker
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D001943:Breast Neoplasms / Q000235:genetics / Q000523:psychology*; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling / Q000523:psychology*; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D008875:Middle Aged; D009154:Mutation; D010051:Ovarian Neoplasms / Q000235:genetics / Q000523:psychology*; D018570:Risk Assessment