Patient experiences with hereditary cancer genetic test result release in the setting of the 21st Century Cures Act final rule

The 21st Century Cures Act Final Rule is a federal law recently implemented in the United States of America which prompted a practice shift among genetic counselors who historically disclosed genetic testing results by directly speaking with patients. Herein, we report participant experiences following a single-center’s approach of patients selecting provider-facilitated versus immediate release of hereditary cancer genetic testing results in the electronic health record preceding provider review. A voluntary survey was sent to patients who completed pre-test genetic counseling and hereditary cancer genetic testing within the University of Pennsylvania Health System. Responses were analyzed using descriptive statistics. Participants ( n = 153) were predominately White (77%), female (81%), obtained Master’s or Doctoral degrees (47%), and a median age of 60 (range 22–81). Participants across both result release cohorts did not differ in demographics, indication for testing, answers to knowledge-based questions or initial emotional responses. When asked about release preference for future genetic testing, most participants preferred provider-facilitated electronic portal message or a phone call. Of the participants who initially elected immediate release, only 18% (20/113) would again elect immediate release for future genetic tests. Participants across results release cohorts predominately elect for provider-facilitated release for future genetic testing, suggesting provider involvement may benefit patient disclosure experience.