Acceptance of invitations for p53 and BRCA1 predisposition testing: Factors influencing potential utilization of cancer genetic testing

• Published in: Psycho-oncology (Chichester, England) Vol. 5; no. 3; pp. 241 - 250
• Main Authors: Patenaude, Andrea Farkas, Schneider, Katherine A., Kieffer, Stephanie A., Calzone, Kathleen A., Stopfer, Jill E., Basili, Laura A., Weber, Barbara L., Garber, Judy E.
• Format: Journal Article
• Language: English
• Published: Chichester, UK John Wiley & Sons, Ltd 01.09.1996
• Subjects: Cancer; Genetic screening; Influences
• ISSN: 1057-9249; 1099-1611
• DOI: 10.1002/(SICI)1099-1611(199609)5:3<241::AID-PON235>3.0.CO;2-6

Data on uptake of two cancer predisposition testing programs is presented as the basis for discussion of factors contributing to the acceptance and refusal of genetic testing. Eighty percent (n = 29) of the 36 members of 2 BRCA1 families invited for BRCA1 predisposition testing and counseling accepted, while only 39% (n = 22) of the 57 Li‐Fraumeni syndrome family members invited for p53 predisposition testing and counseling enrolled and 14% (n = 8) postponed enrollment. Factors that may influence utilization of cancer genetic testing programs include programmatic demands, nature and immediacy of cancer risk, demographic factors, perceived lethality of the cancers involved, clarity of surveillance recommendations and perceived efficacy of screening, ego‐strength, and family experience with cancer. Further research is needed to determine the relative weight of these factors and to define how acceptors and decliners of genetic cancer predisposition testing differ. One implication of the hypothesis that individuals seeking testing are psychologically different than those who decline is that more severe psychiatric sequelae of testing might be expected if individuals are tested who have not themselves freely chosen testing. Such subjects might in the future include children whose parents decide about testing or adults tested as a prerequisite to being employed or insured. Further research on decliners and continued psychological evaluation of the impact of cancer predisposition testing is recommended.