CHICAGO – Oct. 20, 2023 – While many hospitalized patients would benefit from genetic counseling, there aren’t enough genetic counselors to provide pre- and post-testing guidance. New research being previewed at the National Society of Genetic Counselors (NSGC) 42nd Annual Conference will assess whether that shortage can be addressed by having patients watch pre-test genetic counseling videos that help them decide whether to move forward with genetic testing.
The study is supported by the Jane Engelberg Memorial Fellowship (JEMF), a prestigious award given by the NSGC. Research should be completed in December 2025.
If the doctor believes the patient would benefit from genetic testing, they will be shown the video while in the hospital. The video will take the place of the initial pre-test visit with a genetic counselor. It features a genetic counselor who provides the same key information about genetic testing normally offered in person so the patient can make an informed decision about whether to proceed with testing. If they decide to have genetic testing, their blood would be drawn and genetic testing conducted, and a genetic counselor would then meet with the patient in person to discuss the results.
“Only a small number of genetic counselors see patients in the hospital, even though we know there is a big demand for this service,” said Emily Brown, MS, CGC, lead author of the study and a genetic counselor at Johns Hopkins University, Baltimore. “We will test whether this model successfully offers access to genetic counseling services to hospitalized patients without increasing the burden on already-busy genetic counselors.”
Because of the high demand in cardiology for genetic counseling, the study will be conducted among cardiology patients being treated at Johns Hopkins Hospital for cardiovascular conditions that are highly suggestive of a genetic cause, such as a heart attack, heart failure, cardiomyopathy (heart muscle disease), irregular heartbeats (arrhythmias) and high cholesterol all diagnosed at young ages. Brown hopes to begin recruiting patients in March 2024.
Additionally, the following students have been given JEMF awards for their research.
2023 Student Research Award Winners:
- Elizabeth Hart: “Before and After: examining prenatal genetic counselors’ perceptions of the impact of the Roe v. Wade overturn on their practice”
- Minseo Jeong: “Incorporating Restorative Justice as a Framework and Practice for Building Relationships and Accountability in Genetic Counseling”
- Traevia Morris: “Understanding the impact of inquiring about race, ethnicity, and ancestry during pedigree construction on patients”
- Tessa Kolar: “Evaluating Family-Centered Care at BC Children’s Hospital When There Is No Genetic Counselor: Healthcare Providers’ Perspectives”
- Simone Hetherington: “Development of a Conceptual Model of Burnout in Patients during the Diagnostic Odyssey”
- Katherine Parks: “Importance of Genetic Counseling Supervision Competencies from the Perspective of New Graduates from Genetic Counseling Programs”
2023 Student Manuscript Award Winner:
- Loryn Byres, MS, CGC: “Exploring Autistic adults’ perspectives on genetic testing for autism”
Note to editors: Media interested in viewing study abstracts, interviewing authors and/or attending sessions at the NSGC Annual Conference can contact NSGC’s PR team at 630-344-2009 or NSGCPR@pcipr.com.
About the National Society of Genetic Counselors
NSGC is the leading voice, authority and advocate for the genetic counseling profession. Membership represents 5,000 masters-level health professionals, who are committed to ensuring that the public has access to genetic counseling and genetic testing. For more information, visit www.nsgc.org.