From 2004 to 2024, the Health Resources and Services Administration (HRSA) funded the National Coordinating Center for the Regional Genetics Networks (NCC). NCC developed and maintained the Genetics Policy Hub.
With the conclusion of NCC funding, the Genetics Policy Hub (GPH) will no longer be updated or maintained. Information on GPH should be used for historical reference only.
Helpful Resources
Many organizations develop helpful resources that can assist you in understanding the policy system or help understand a specific genetics policy. To help assist you, we have compiled a list of resources developed by organizations beyond the Genetics Policy Hub that could be useful.
Highlighted Resource
The Heartland Regional Genetics Network (HRGN) helps provide information about letters of medical necessity with a webinar that discusses the topic and a list of resources to help providers write a letter of medical necessity on their website.
Ask A Policy Expert
Developed by: The Catalyst Center
“The Catalyst Center team has over 15 years of experience in policies related to health care financing and coverage for children. Our policy focus among children is children and youth with special health care needs, which we define as children who “have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and also require health and related services of a type or amount beyond that required by children generally.””
Policy Issues in Genomics
Developed by: National Human Genome Research Institute (NHGRI)
NHGRI publishes information on coverage and regulation of genetics testing, genetic discrimination, genome editing, health disparities, human subjects research, informed consent, intellectual property, investigative genomics, genomics privacy, and synthetic biology.
How A Bill Becomes Law
Developed by: National Human Genome Research Institute (NHGRI)
Learn how a bill becomes a law from NHGRI.
Timeline Of the Genetic Information Nondiscrimination Act (GINA)
Developed by: National Human Genome Research Institute (NHGRI)
NHGRI published information about GINA, a federal law that provides protection to genetic information.
Talking Glossary of Genetics Terms
Developed by: National Human Genome Research Institute (NHGRI)
Learn about genetic terms via the NHGRI.
Understand How Health Insurance Works
Developed by: Kaiser Family Foundation
The Kaiser Family Foundation provides information about how to obtain health insurance, including the open enrollment period for the Marketplace, insurance through the government.
Prior Authorization
Developed by: American Medical Association (AMA)
The AMA developed an overview of what prior authorization is, which is a tool used by insurance companies that require services must be pre-approved before they occur if they are to be covered by the insurance company.
Health Coverage Basics
Developed by: Center for Medicare and Medicaid Services (CMS)
Learn about the basics of getting health insurance through the Marketplace at this CMS developed site.
Pathways To Medicaid Coverage For Children And Youth with Special Health Care Needs
Developed by: The Catalyst Center
The Catalyst Center presents an infographic about how to obtain Medicaid for children with special healthcare needs.
Community Based Resources For Families
Developed by: The Catalyst Center
The Catalyst Center compiles community-based resources for families of children with special healthcare needs.
Patient Advocate Foundation Resources
Developed by: Patient Advocate Foundation
Interested in advocacy resources? Learn more about advocacy at the Patient Advocate Foundation.
Genetic Information Nondiscrimination Act Patient Resource
Developed by: National Human Genome Research Institute (NHGRI)
A resource for patients that provides information about the Genetic Information Nondiscrimination Act (GINA) from NHGRI.
ICD-10 Resources
Developed by: Center for Medicare and Medicaid Services (CMS)
A guide to help providers understand ICD-10, coding mechanism for billing of services.
Coverage and Reimbursement of Genetic Tests
Developed by: National Human Genome Research Institute (NHGRI)
NHGRI provides information regarding coverage and reimbursement of genetic tests.