Key Takeaways
- JEMF award supports project to increase access to genetic testing and genetic counseling for patients with early-onset AFib
- Expert- and patient-designed booklet to help AFib patients younger than 45 decide on same-day testing followed by genetic counseling
- Early testing identifies risk sooner, guiding prevention and treatment
- Findings presented this week at the National Society of Genetic Counselors (NSGC) 44th Annual Conference
SEATTLE – Nov. 9, 2025 – A two-phase study will test a new clinic workflow designed to accelerate access to genetic testing and genetic counseling for people diagnosed with a heart rhythm disorder before age 45, according to information about the project being previewed at the National Society of Genetic Counselors (NSGC) 43rd Annual Conference. The project is supported by NSGC’s prestigious Jane Engelberg Memorial Fellowship (JEMF).
Atrial fibrillation (AFib), which causes the heart's upper chambers to quiver instead of beat normally, is common among people older than 65. When AFib develops before age 45, there may be a genetic component, and identifying that connection can guide prevention and treatment for future health issues sooner. However, it can take up to a year for people with early-onset AFib to get an appointment to see a genetic counselor at a specialty cardiology genetics clinic and have genetic testing.
The study focuses on developing and testing a patient-friendly booklet that would be provided to patients when they are first diagnosed with early AFib to help them decide whether they want to move forward with genetic testing that day. Patients who choose to have testing then meet with a genetic counselor who will explain their results once they return.
“Many people diagnosed with young AFib are either unaware that they qualify for genetic testing and counseling or wait months to obtain these services that could change their care or their family’s care today,” said Elizabeth Jordan, MMSc, CGC, winner of the JEMF, leader of the project and associate professor and genetic counselor at The Ohio State University, Columbus. “Our goal with this project is to help patients make informed choices through a new care model that will increase access and decrease wait times to genetic testing and counseling.”
Early-onset AFib may be an early sign of a genetic heart muscle or rhythm condition. Patients with a genetic link may benefit from early treatment and ongoing assessment of the condition, such as regular heart imaging to help prevent more severe symptoms and conditions, including early heart failure or sudden cardiac death. Because the recommendation from the American College of Cardiology that AFib patients younger than 45 have genetic testing is new, there is no established process to meet this clinical need. Those who are referred often wait for a pre-test genetic counseling appointment and a physician appointment, which can take six months to a year.
The first phase of the project involves developing a patient-friendly booklet that explains genetic testing. Twenty genetic counselor experts and twenty patients who previously decided to undergo genetic testing for heart conditions will be interviewed to provide input on the booklet content and design. The researchers anticipate the final product will be a four-page booklet with graphics and text featuring key information to help patients decide whether they want to undergo genetic testing. Patients will be interviewed for feedback to ensure their needs and preferences are reflected in the book.
The booklet will be finalized by mid-2026, followed by phase two, which involves using the Multi-dimensional Measure of Informed Choice scale to compare genetic testing decisions by at least 42 early AFib patients who are provided the booklet and 42 patients with similar cardiac conditions who see a genetic counselor to assist with genetic testing decision making. The booklet will be considered a helpful tool if informed choice is similar across both groups. The team will also assess the workflow of the model to determine how long it takes patients to be tested and see a genetic counselor, as well as the downstream revenue benefit in providing more genetic tests.
If validated, the booklet will be given to patients by the nurse practitioner during their regular appointment for the AFib diagnosis. If the patient decides to move forward with genetic testing, the nurse practitioner will order the test that day. The results will be available within a week and routed to the genetic counselor, who will schedule a telehealth appointment with the patient.
“The genetic counselor will explain the results of the test, and if there are no relevant genetic findings and there is no family history, the patient won’t need further follow-up,” said Jordan. “If the genetic test shows anything concerning or the patient has a concerning family history, the genetic counselor will recommend that the patient see a cardiologist for additional clinical evaluation.”
The project demonstrates a multidisciplinary model of care with key co-investigators, including an electrophysiology physician, a nurse practitioner and a communication scientist. Jordan will provide an update on the project at the NSGC’s 2026 meeting.
Additionally, the following students have been given JEMF awards for their research.
2025 Student Research Award Winners:
- Yein Ji: “Exploring postmortem genetic testing practices and genetic counseling integration in U.S. medical examiner offices: A qualitative study”
- Lydia Storm: “Investigating pathways and experiences that prepare genetic counselors for genetic counseling director positions”
- Kate Borgert: “Patient experiences with alternative delivery models of genetic counseling in hereditary cancer care”
- Mai Ly Burke: “Integrating genetic counseling into Vietnam’s healthcare system: Assessing needs, challenges, and opportunities”
- Alexandra Saieh: “Caregivers’ cultural values, care burden, and medical decision-making for children with undiagnosed medically complex conditions in CincyKidSeq genomic research cohort at Cincinnati Children’s Hospital: A pilot study”
- Nikol Nikolova: “Genetic counseling student and patient outcomes at a student-run free clinic”
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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 more than 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.
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