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


Authors: Levin, B.; Salo-Mullen, E.; Culver, J. O.; Kurz, R. N.; Brock, P.; Demsky, R.; Lloyd, S.; Lopez, G.; Mai, P. L.; Wolfe Schneider, K.
Article Title: Call to action for genetic counseling research in hereditary cancer: Considerations from the evidence-based guidelines development process
Abstract: 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. © 2025 The Author(s). Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.
Keywords: genetics; evidence based medicine; neoplasm; evidence-based medicine; neoplasms; practice guideline; risk assessment; practice guidelines as topic; genetic screening; genetic testing; genetic counseling; hereditary cancer; humans; human; evidence‐based guidelines
Journal Title: Journal of Genetic Counseling
Volume: 34
Issue: 3
ISSN: 1059-7700
Publisher: John Wiley & Sons, Inc.  
Date Published: 2025-06-01
Start Page: e70026
Language: English
DOI: 10.1002/jgc4.70026
PUBMED: 40305378
PROVIDER: scopus
PMCID: PMC12043037
DOI/URL:
Notes: Article -- Source: Scopus
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