Your Hub for the Latest Genetics Policy Information and Resources
The National Coordinating Center for the Regional Genetics Networks (NCC) is pleased to develop and share resources related to genetics policy across the U.S. Within the hub, you can find the latest legislation and regulation at the state and federal level, latest information on Medicaid coverage policy, information about specific policy topics and related to policy statements from national organizations, and much more!
Interested in a general genetics policy topic such as whole exome sequencing or a policy related to a specific condition? Use the search bar above to find information related to proposed legislation/regulation, Medicaid coverage policy, policy statements, events, and general resources.
Our Resources
Genetics Policy Areas
Interested in exploring how policy affects genetics patients and providers? In the Policy Area of our website, we provide a brief overview of why a specific topic (ex. newborn screening) is important to the delivery of genetics care, how policy affects the topic area, and share position statements from national organizations on the policy area.
Proposed Legislation/Regulation
Did you know that almost daily there is a piece of legislation or regulation introduced in the United States related to genetics? Policies range from coverage of specific genetic tests or services to supporting educational programs about genetic conditions. Explore what your state is currently considering by visiting our interactive map.
Medicaid Coverage of Genetic Services
Do you want to know what your state’s Medicaid program covers related to genetic services? Updated yearly, our Medicaid database includes general coverage criteria, coverage of specific genetic tests, and coverage of specific services, such as medical foods. The database collects publicly available information from each state Medicaid program.
Our Twitter Account
A bill introduced by the #California Assembly on February 6, 2023, shall add pharmacogenomic testing as a covered benefit under California’s #Medicaid program; and define #pharmacogenomic testing as laboratory #GeneticTesting. Learn more at: https://t.co/vVeImQdDUE Read More
The #Arizona House introduced a bill on February 7, 2023, to require @AHCCCSgov to conduct an annual review of all medications and forms of treatment for #SickleCell disease and services available to #Medicaid beneficiaries in the state. Learn more at: https://t.co/emk7c3WGER Read More
On February 7, 2023, the #AZ House introduced a bill to require health care corporations and disability insurers to provide coverage for #GeneticTesting and #GeneticCounseling for #BRCA and other genes associated with an increased #cancer risk. Learn more: https://t.co/gTPGozAb2F Read More
A bill introduced by the #Arkansas House on February 6, 2023, would create the #RareDisease Advisory Council (#RDAC) within the Arkansas Department of Human Services, @ARHumanServices. Learn more at: https://t.co/yrDPOBqrB2 Read More
RT @ELSIhub: Join us for the next #ELSIFridayForum "Indigenizing #Genomics and Advancing #Indigenous Data Sovereignty" with Phillip Wilcox… Read More
The #Minnesota Senate introduced a bill on February 6, 2023, which shall modify existing law on the use of #genetic information by government entities; and create new consumer protection law regarding the use of genetic information. Learn more at: https://t.co/ntuYijpuI7 Read More
On February 2, 2023, the #Kansas Senate introduced a bill to require @KDHE to provide #NewbornScreening, treatment, and education for conditions recommended in the "Newborn Screening: Toward a Uniform Screening Panel and System" report. Learn more at: https://t.co/EA6Ix4Jmyp Read More
The January 30th-February 3rd Wrap-Up of the Week highlights the next Advisory Committee for Heritable Disorders in Newborns and Children (#ACHDNC) meeting, and 11 newly introduced State bills. Subscribe to receive the new GPH Weekly Wrap-Up in your inbox: Read More
Latest Genetics Policy Events
Many organizations, including NCC, hold events that relate to genetics policy. Find the next webinar, meeting, social media event, or more by checking out our calendar of activities.
Legislative, Insurance, and Finance Tracking Newsletter
Would you prefer to receive updates about genetics policy to your inbox? NCC publishes the Legislative, Insurance, and Finance Tracking (LIFT) Newsletter tri-annually with the latest updates on federal legislation, as well as policy resources developed by NCC and other organizations that are helpful to the genetics community.
Newsletter Signup
NCC, the organization that publishes the Genetics Policy Hub, publishes a tri-annual newsletter that provides the latest updates on federal legislation, as well as genetics policy resources developed by us and our national partners. Subscribe today to receive the latest issue in your inbox.