Abstract
The Cures Act Final Rule, enacted in response to the passing of the 21st Century Cures Act, focuses on granting immediate patient access to their personal medical record, including test results and clinical documentation. The immediate release of results to patients electronically may result in a significant shift in the role of genetic counselors in the communication of genetic information. This project sought to understand changes in practice experienced by clinical and laboratory genetic counselors as a result of the recent implementation of the 21st Century Cures Act Final Rule and their initial reactions to its impact. An anonymous online survey was distributed via e-blast to the National Society of Genetic Counselors’ listserv to recruit individuals who were working as clinical or laboratory genetic counselors in the United States. From this, 117 complete surveys were returned and analyzed. It was noted that more clinical genetic counselors indicated they were comfortable with patients having direct access to clinical documentation (82%) than genetic testing results (25%) on average. Most genetic counselors surveyed (67%) expressed concern at being unprepared for encounters with patients, and open- ended responses revealed a theme of perceived negative psychosocial impacts on patients. Additionally, only 43% of genetic counselors felt their institution effectively communicated changes in policy to them. Only some changes in workflow were reported. Our results show that steps need to be taken to explore the impact of this rule on patients and how best to support them, as well as the long-term effect of the Cures Act Final Rule on genetic counselors as more institutions enact appropriate changes in policy.