Key Takeaways
- JEMF award will support a national study that aims to assess genetic counseling billing practices, creating a pathway for improving them
- Researchers will identify what works and what prevents genetic counselors from billing for their clinical effort
- Findings of the two-year study will be used to develop an evidence-based framework to help institutions bill more effectively for genetic counseling services
BALTIMORE – Nov. 11, 2026 – A new national study will examine genetic counseling billing practices across health systems to identify approaches that could help support sustainability, reduce uncompensated effort and expand patient access to care. The project is being previewed at the National Society of Genetic Counselors (NSGC) 45th Annual Conference and is supported by the prestigious Jane Engelberg Memorial Fellowship (JEMF).
Genetic counseling services have expanded significantly, but healthcare institutions still lack consistent ways to bill for the clinical work of genetic counselors. The 2025 transition from CPT® billing code 96040 to 96041 was intended to better capture the time genetic counselors spend providing patient care, and early data show an 86% increase in billable units. The study will provide the first multi-institutional look at how the new code is being used in practice, including whether it has streamlined billing or created new challenges.
“Genetic counselors are providing important clinical services, but there isn’t a consistent way for institutions to bill for that work, so some may limit genetic counseling positions, reduce the number of appointments available to patients, or just forgo these vital services altogether,” said Amy Shikany, MS, CGC, winner of the JEMF award and a genetic counselor at The Heart Institute, Cincinnati Children’s Hospital Medical Center. “By identifying what’s working and why, we hope to give institutions with genetic counseling programs practical tools to build more sustainable services and ultimately expand patient access.”
The two-year study will combine a national survey with in-depth case studies to understand not only how institutions bill for genetic counseling, but also why some methods work better than others. Shikany and her team plan to survey billing leaders at about 288 U.S. clinical sites with five or more genetic counselors, gathering information on the billing codes and mechanisms they use, as well as how those approaches are implemented.
Researchers will then conduct case studies at four to eight institutions to take a closer look at how billing works in practice. They will examine workflows and documents and interview genetic counselors, revenue-cycle staff, compliance officers, administrators and other stakeholders to identify factors that help or hinder successful billing.
Shikany and her team will combine survey results and case-study findings with input from an advisory panel to develop an evidence-based framework that includes decision-making flowcharts, coding guidance and best practices that genetic counseling programs can adapt to their own institutions.
“Ultimately, we hope to understand why some institutions bill effectively while others offering identical services struggle,” Shikany said. “By bringing transparency to these practices, our goal is to help institutions identify billing strategies that have proven successful in similar contexts.”
Additionally, the following students have been given JEMF awards for their research.
2026 Student Research Award Winners:
- Kerra Hall: “Black perspectives on variants of uncertain significance results for hereditary breast and ovarian cancer”
- Kasey Brennan: “Navigating through uncertainty: A netnographic study of mosaic embryo discussions in online infertility communities”
- Badi Quinteros: “Integrating genetic risk assessment into the gender-affirming care cascade: A qualitative study of transgender and gender-diverse youth and guardian perspectives”
- Alison Merket: “Assessing revenue generated from prenatal genetic counseling services”
- Dania Kallas: “The unmet needs and lived experiences of adolescent patients with inherited aortopathies”
- Anne Bonds & Kayla Bright: “Development and refinement of a genetic counselor professional identity scale (GC-ID)”
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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 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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