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
@GovLarryHogan approved a bill on May 12, 2022 requiring the #MD Advisory Council on #Hereditary and #Congenital Disorders and the Secretary of Health to approve a condition for #NewbornScreening within 1 year after its addition to the #RUSP. Learn more: https://t.co/UzQ4Bg2Xo9 Read More
On May 12, 2022, #MD @GovLarryHogan approved a bill to require @MDHealthDept to establish a system to provide information on the #SickleCell or #thalassemia trait; and maintain a list of resources on its website for health care practitioners. Learn more: https://t.co/kci92WL5tm Read More
RT @commonwealthfnd: Federal ERISA law doesn’t preempt many state reform efforts to control health care costs, but that’s not the case with… Read More
RT @ELSIhub: Upcoming #ELSI Events listed on @ELSIhub! (1/3) May 18, 5-6pm BST: "Reproductive and #Genetic Privacy in #Genome Editing," fe… Read More
RT @Health_Affairs: Join us tomorrow! The centerpiece of @Health_Affairs May #JournalClub is, “In #Medicaid Managed Care Networks, Care Is… Read More
The May 9-13, 2022 GPH Twitter round-up includes two enacted state bills one related to #Biomarker testing and one related to the formation of #RareDisease Advocacy Council. Tweets also share information about #geneticsprivacy and updates from #ACHDNC. View the round-up below: Read More
On May 13, 2022, the Advisory Committee on Heritable Disorders in Newborns and Children (#ACHDNC) voted to move #Krabbe to full-evidence review. #NewbornScreening https://t.co/mDdCwTgDsu Read More
RT @minoritygenetic: **Comment Deadline June 13. @US_FDA announced a new draft guidance, "Diversity Plans to Improve Enrollment of Particip… 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.