Call to action for genetic counseling research in hereditary cancer: Considerations from the evidence-based guidelines development process

The National Society of Genetic Counselors (NSGC) planned to develop an evidence-based guideline on the outcomes of genetic counseling for individuals at risk for hereditary cancer. The practice guideline workgroup used Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology including ranking the importance of outcomes of genetic counseling for individuals at risk for hereditary cancer. However, due to evidence gaps in the literature, particularly the limited availability of high quality and well-designed studies for many important outcomes of genetic counseling, the NSGC identified a need for additional research prior to guideline development. Herein, we describe a “call to action” for future research, particularly for health services-related outcomes of genetic counseling in diverse populations. Identified research priorities include conducting high-quality studies that separate the outcomes of genetic counseling from genetic testing, assessing outcomes associated with pre- and/or post-test genetic counseling, measuring patient-reported and health system-reported outcomes, comparing genetic counseling by certified genetic counselors versus non-genetics-trained providers, differentiating need in various hereditary cancer indications, and identifying barriers to genetic counseling in historically excluded patient communities.