Cancer Research Highlights Need for Genetic Counseling Guidelines

Strategic Insights -

Investigators at Camden, New Jersey's Cooper University Hospital have called for research into the outcomes of genetic counseling for individuals at risk of hereditary cancer. The National Society of Genetic Counselors (NSGC) plans to develop an evidence-based guideline on these outcomes, but evidence gaps in the literature have been identified, particularly regarding health services-related outcomes in diverse populations. Research priorities include separating the outcomes of genetic counseling from genetic testing and assessing patient-reported outcomes. A "call to action" has been issued to address these gaps and ensure that guidelines are developed with high-quality evidence.

Key Takeaways:

  • The National Society of Genetic Counselors (NSGC) plans to develop an evidence-based guideline on the outcomes of genetic counseling for individuals at risk for hereditary cancer.
  • Research priorities include conducting high-quality studies that separate the outcomes of genetic counseling from genetic testing and assessing outcomes associated with pre- and/or post-test genetic counseling.
  • Identified research priorities also include 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.
  • The study highlights the need for additional research to address evidence gaps in the literature, particularly regarding health services-related outcomes in diverse populations.
  • The research was led by Brooke Levin of Cooper University Hospital and included co-authors Erin Salo-Mullen, Julie O. Culver, Raluca N. Kurz, Pamela Brock, Rochelle Demsky, Stacy Lloyd, Ghecemy Lopez, Phuong L. Mai, and Kami Wolfe Schneider.

Statistics:

  • No specific statistics were mentioned in the article.
  • The study plans to develop an evidence-based guideline on the outcomes of genetic counseling for individuals at risk for hereditary cancer.
  • 34(3) of the Journal of Genetic Counseling volume is irrelevant to the provided data; however, the study from the volume has set research priorities for the future.
  • The study has called for high-quality studies that separate the outcomes of genetic counseling from genetic testing.

Sources:

  • Call To Action for Genetic Counseling Research In Hereditary Cancer: Considerations From the Evidence-based Guidelines Development Process. Journal of Genetic Counseling, 2025;34(3).
  • Cooperative University Hospital, Camden, New Jersey, USA.
  • NSGC (National Society of Genetic Counselors), Brooke Levin, Erin Salo-Mullen, Julie O. Culver, Raluca N. Kurz, Pamela Brock, Rochelle Demsky, Stacy Lloyd, Ghecemy Lopez, Phuong L. Mai, Kami Wolfe Schneider.