NSGC’s advocacy efforts center on being the leading voice for genetic counselors – advocating for their diverse roles, advancing the practice of genetic counseling, and promoting collaboration, education, and research to ensure equitable access to genomic healthcare. In addition to our top priority of securing Medicaid recognition of genetic counselors as providers, there are several other healthcare issues that impact our field. We partner with aligned organizations to amplify our voice and advance our positions. Below is a list of issues we are actively engaged with or monitoring, NSGC’s position on each, and any related sign-on letters we have joined with other groups.
| Top Priority |
Position |
NSGC Comment Letters and Sign-Ons |
| Access to Genetic Counselors Services Act |
Supports fair reimbursement for genetic counselors’ services and recognition of genetic counselors as billable professionals under Medicare and Medicaid. Learn more here. |
Access to Genetic Counselors Services Act website |
| Active and Monitoring |
| Testing (Pharmacogenomics; at home GC testing; LDT; gene therapy; companion diagnostics) |
Supports regulation of clinical-grade genetic testing, expanded patient access to accurate and professionally interpreted tests, and opposes FDA’s treatment of LDTs as IVDs. |
Support the Reinstatement of Clinical Laboratory Improvement Advisory Committee (CLIAC) (June 2025)
|
| Research (agency-wide: testing, screening, therapies) |
Supports sustained federal funding for genomic research and training infrastructure and opposes cuts that undermine DEI or innovation in genetic research |
|
| AI (involved in genetic testing analysis) |
Supports responsible integration of AI to improve efficiency and access while ensuring proper oversight and clinical accuracy. |
|
| Telehealth |
Supports making permanent Medicare telehealth flexibilities to improve patient access to genetic counseling services. |
|
| Data Privacy, Security, and Sharing |
Supports strong privacy protections for genetic data and the ethical sharing of de-identified data while monitoring emerging federal and state privacy legislation. |
|
| Patents |
Supports maintaining the Supreme Court’s decision preventing the patenting of naturally occurring DNA and opposes legislation that would reverse it. |
|
| Genetic Information Nondiscrimination Act (GINA) |
Supports GINA, HIPAA, and other local, state and federal legislation that protects individuals by safeguarding employment and medical insurance eligibility but recognizes these laws do not provide protections from all discrimination |
Actively participating in coalition work to determine next steps for GINA |
| Reproductive Healthcare |
Supports the ability of genetic counselors to provide accurate, unbiased information about all reproductive options without legal or political interference. |
|
| Newborn Screening |
Supports the continuation and strengthening of the national newborn screening program and opposes termination of the ACHDNC. |
|
| Medicare Coverage |
Supports expanding Medicare coverage for clinically validated genetic tests and genetic counseling services. |
|
| Medicaid |
Opposes Medicaid cuts that limit patient access to genetic counseling and testing services. |
Personalized Medicine Coalition Letter to CMS: Request for State Guidance on EPSDT Coverage of Genetic and Genomic Sequencing for Children with Suspected Rare Diseases (December 2024) |
Letters to Adminisration