Abstract
The Genetic Information Nondiscrimination Act (GINA) designed to prevent genetic discrimination by employers and healthcare insurers, became a federal law in May 2008. Genetic counselors are in a unique position to comment on GINA’s impact on the delivery of genetic services. The aim of this study was to assess changes in genetic counseling practices since the implementation of GINA. We assessed genetic counselors’ knowledge about the scope of GINA and their attitude regarding genetic discrimination and GINA. We also assessed counselors’ perceptions of their client’s experiences with genetic discrimination since GINA. An anonymous online survey consisting of open and closed ended questions was completed by 257 genetic counselors recruited from the National Society of Genetic Counselors (NSGC) general and Cancer SIG listservs. Results showed that genetic counselors are knowledgeable about the major protections offered by GINA. However, there is still confusion about its protections for individuals pursuing direct-to-consumer testing and limitation regarding pre-existing genetic conditions. Genetic counselors reported that they now discuss genetic discrimination with more clients than they did prior to GINA. Still, they discuss the law with fewer than 50% of their clients. A majority (64.6%) of the counselors reported specifically discussing GINA only when the client asked about it. Cancer genetic counselors discuss GINA with more clients (68%) than genetic counselors working in pediatric, prenatal or other specialties (68%, 28%, 11% and 39% respectively). Genetic counselors are confident that GINA will provide its intended protections and reported reassuring their clients to that regard. In fact, our respondents reported that they would be more likely to personally pursue genetic testing for conditions such as BRCA1/2 without concern of discrimination. In conclusion, our results show that genetic counselors have an overall awareness about and confidence in the protections offered by GINA.