Inside the National Society of Genetic Counselors: Expanding Access to Genomic Care

Genomics is no longer confined to a single specialty or a standalone clinic. Today, it shapes care across virtually every area of medicine, from prenatal screening and oncology to cardiology, neurology and primary care. As genomic information becomes part of routine clinical decision-making, the role of professionals who can both interpret complex data and guide patients through its implications has expanded in parallel.

Xtalks spoke with Carrie Haverty, President of the National Society of Genetic Counselors (NSGC), about the society’s mission, the evolving place of genetic counselors across the healthcare and life sciences ecosystem and the access and policy issues that continue to influence how patients receive genomic care.

A Profession Integrated Across Healthcare

Carrie described NSGC’s role as giving genetic counselors a collective voice, supporting how the profession continues to evolve and encouraging collaboration and research so that genomic care can be more accessible and equitable. Genetic counselors could play a central role in making innovative genomic healthcare available to more patients and in helping improve outcomes across different conditions.

Genetic counselors, she explained, are trained at the graduate level in both medical genetics and counseling. This background allows them not only to interpret complex genomic information, but also to help patients and families understand what it means for them personally, offering support as they navigate difficult, uncertain or life-changing situations.

In clinical practice, they now work across a wide range of specialties. Reproductive health and prenatal care remain core areas, and oncology is a rapidly growing one, but genetic counselors are also embedded in cardiology, neurology, ophthalmology, nephrology and other fields. Increasingly, they are part of primary care teams and inpatient services as well.

“The days of genetics just being isolated in a single department in a hospital setting are gone,” Carrie said. “Now, every clinician is touching genomics in their provision of healthcare, and genetic counselors are part of that.”

Their roles extend well beyond the clinic. Genetic counselors are involved in research, education, advocacy and product development, including work within pharmaceutical companies and genomic testing laboratories. Carrie herself works in product research and development alongside her role as NSGC President, which gives her a broad view of how genomic medicine intersects with multiple parts of the healthcare system.

Because of this wide reach, NSGC engages with healthcare systems, patient advocacy organizations, professional societies, industry partners, public health groups and research organizations, reflecting the many points at which genomic information now influences care.

Access, Reimbursement and CMS Recognition

While NSGC represents a large proportion of practicing genetic counselors in the US, the most pressing challenge facing the profession is not membership growth but access to services.

Genetic counseling is recognized and covered by Medicare and many Medicaid programs. However, genetic counselors are not recognized by the Centers for Medicare & Medicaid Services (CMS) as independent healthcare providers. As a result, they cannot bill Medicare directly for the services they are specifically trained to deliver.

“At a time when doctors are stretched, and care is costly, we are funneling more and more Medicare beneficiaries to physicians and other CMS-recognized clinicians for genetic counseling rather than to those who are specifically trained to provide this care, namely genetic counselors,” Carrie said.

Because state Medicaid programs often follow CMS policy, this gap in provider recognition also affects some Medicaid beneficiaries. It can be particularly challenging for patients in rural or underserved communities, where access to specialized services is already limited.

Other non-physician clinicians, such as physical therapists, have previously navigated similar issues, but achieving CMS recognition requires federal legislation. To address this, bipartisan bills have been introduced in both the US Senate and House under the Access to Genetic Counseling Services Act. If enacted, the legislation would allow genetic counselors to be recognized as providers and to bill independently for Medicare services.

“That is the best way that we can help close some of these access gaps for Medicare beneficiaries and downstream Medicaid beneficiaries as well,” Carrie said. “I think access and reimbursement are not unusual challenges to have in healthcare, and it certainly is ours right now.”

Priorities for the Years Ahead

NSGC is currently in the second year of a three-year strategic plan, and passage of the Access to Genetic Counseling Services Act remains one of its top priorities. Alongside this effort, the society is focused on strengthening collaboration across the broader genomic healthcare ecosystem.

This includes working more closely with other professional organizations, such as cardiology and obstetrics societies, as well as with private industry, research groups and public health entities. Carrie also emphasized the importance of engaging patient advocacy organizations early and consistently.

“Patient advocacy organizations are often the last to the table, but should be the first,” she said. “There’s often a lot of alignment, and we can work together on many of these issues if we’re engaged in a meaningful way.”

A key goal is to ensure that genetic counselors are included whenever genomic initiatives are being planned, whether in clinical programs, research efforts or policy discussions. 

“Just having genetic counselors be top of mind whenever anyone is working on anything in genomics and making sure that those genetic counselors are at the table, in the room, contributing to whatever that project is and being able to support that area,” she said. 

Modernizing and Expanding a Global Community

NSGC is also preparing for continued growth of the profession itself. Genetic counseling began as a relatively small and specialized field, but as genomics has become integrated into mainstream care, the number of practitioners and the diversity of their roles have expanded.

The society is updating its infrastructure and tools to support a larger and more complex membership base. This includes accommodating a growing international community of genetic counselors, whose training pathways and professional environments can vary by country. NSGC has introduced new membership categories for international practitioners as one step toward meeting these evolving needs.

“We’re definitely moving from being a small, intimate group, because it’s a relatively new profession and a relatively small profession, but we aren’t so small anymore,” Carrie said.

With genetic counselors now practicing across countries and healthcare systems, NSGC is adapting its structure to reflect that growth and variation, including through new membership categories for international practitioners. “This is a growing field and will continue to do so,” she said.

“Genomics is not isolated to a single genetics clinic in the hospital anymore. It’s really integrated into every area of clinical practice, and that means genetic counselors are integrated into every area of practice and continuing to expand and grow.”