Development and pilot testing of two decision aids for individuals considering genetic testing for cancer risk

Abstract

Current practice in genetic counseling may not allow a full deliberation of the consequences of decisions about genetic testing for cancer risk, despite increasing demand for these services. Thus, two decision aids for individuals considering genetic testing for hereditary breast/ovarian cancer and hereditary non-polyposis colorectal cancer (HNPCC) susceptibility were developed and pilot tested with 43 individuals who had previously considered genetic testing for these cancer syndromes. A description of the decision aid development process is provided, as well as results of the pilot testing, which assessed participants' perceptions of the decision aids. All participants reported that they would recommend the decision aid to others facing the same situation, and 93% reported that the decision aid would have been relevant during their decision-making. The perceived impact of the decision aids on participants' emotions and understanding of genetic testing were assessed. Limitations of the study and future directions are discussed.