The WEDI Genomics Workgroup: Latest Fact Sheet on Genetic Counselors
Sandra Rolfe, PhD, Optum, WEDI Genomics Workgroup Chair
As chair of WEDI’s Genomics Workgroup, a position I volunteered for and took on a couple of years ago, I have the opportunity to better educate the health IT community on issues related to genomics. The topic of genomics is one that I am passionate about, as I have worked in writing evidence-based clinical-decision support solutions related to genetic testing for 16 years. The Workgroup has developed several work products, and the most recently completed project is a fact sheet that addresses the challenges and opportunities that Certified Genetic Counselors (CGCs) experience in today’s health care system.
For those of you who are not familiar with CGCs, they are health care professionals with an advanced degree in medical genetics and counseling. CGCs are part of a patient’s health care team when genetic factors may influence their health, disease risk, and treatment options. Using the patient’s personal and family medical histories, they counsel patients through the appropriateness of genetic testing, complex test results, and decision-making on next steps in care. As precision medicine and genomic technologies continue to grow, CGCs are performing an increasingly vital role in improving diagnostic accuracy, facilitating personalized treatment plans, and promoting appropriate use of genetic testing.
The fact sheet addresses current challenges that CGCs face. These challenges are interrelated and include the lack of Medicare recognition as independent providers, inability to directly bill Medicare Part B, and access limitations for patients who would benefit from CGC services. Combined, these result in difficulties for patients getting access to genetic counseling, delays in counseling and care coordination, and added administrative burden for physicians. There is a growing demand for genetic testing and personalized medicine that is outpacing the CGC workforce capacity.
A current bipartisan and bicameral bill, titled “Access to Genetic Counseling Service Act” (H.R. 6280 and S. 3607) brings the opportunity to address the challenges faced by CGCs. The House bill was introduced by Rep. Adrian Smith (R-NE) and has 24 co-sponsors. The companion Senate bill was introduced by Sen. John Barrasso (R-WY) and has four co-sponsors. If enacted, the new requirements would recognize genetic counselors as Medicare Part B providers, addressing the current access limitations that patients in need of genetic counseling currently face. The benefits would be improved care and treatment options for all patients, and more importantly, high‑risk patients.
The fact sheet also provides an overview of electronic date exchange standards and technology available for capturing and sharing patient genetic counseling information. The fact sheet highlights Health Level Seven’s Clinical Genomics Work Group’s development of a Fast Healthcare Interoperability Resources (FHIR®) standard that is expected to facilitate structured, computable, and interoperable data exchange, replacing the currently burdensome unstructured exchange. Genetic results are often delivered as PDFs
or unstructured text-making this complex data difficult to integrate into clinical workflows. Thus, modern interoperability standards are essential to accelerating the use of CGC in the health care ecosystem.
From improved data exchange standards to the potential for federal legislation, I am optimistic about the future of genetic counseling and the CGCs who dedicate their careers to improving patients’ lives through the access to groundbreaking medicine and treatment. If you are interested in genomics and the need for standard, secure data exchange of genomics information, join me on the Genomics Workgroup monthly calls at 1 pm ET on the second Thursday of the month. Contact Ariana at apoole@wedi.org for help getting signed up for the Workgroup. If you are not a WEDI member, contact Bill at ballder@wedi.org to learn about WEDI membership.