Exploring genetic counselors' personal decisions about genetic counseling and genetic testing

Genetic counseling and testing for adult-onset conditions is a rapidly expanding area of personalized medicine. To date, there have been no studies documenting how this trend has influenced genetic counselors' personal decisions about genetic testing. The purpose of this study was to explore genetic counselors' thoughts, behaviors, and experiences surrounding their own personal experiences with this type of genetics evaluation. A survey composed of closed and open-ended questions was designed to elicit information from current genetic counselors via the NSGC listserv. In total, 390 individuals responded to the survey. Genetic counselors received testing by ways of consultation with a genetic counselor, by ordering the testing themselves, or by their primary care physician ordering the testing. Statistical analysis of the data shows that genetic counselors are more likely to participate in genetic testing for an adult-onset condition as they gain both age (p = 0.001) and experience in the field (p = 0.007), or if they work in an industry/laboratory setting (p = 0.001). Interestingly, genetic counselors who reported specializing in oncology are nearly three times more likely to participate in genetic testing for an oncology indication than genetic counselors who do not report specializing in oncology (p = 0.001). Qualitative responses also indicated that genetic counselors have positive and negative experiences with their own personal genetics evaluations that in some ways parallel findings in the general patient populations and in other ways are unique to the professional-patient experience. The data raises the question of the potential benefit of developing guidelines and/or resources to support genetic counseling professionals who are seeking personal genetics evaluations, and those who are providing services to fellow colleagues.