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
The May 22-26, 2023, GPH Wrap-Up of the Week highlights introduced Federal and state legislation relating to #GeneTherapy and #BreastCancer; and a public hearing relating to #WholeGenomeSequencing. Subscribe to receive the Wrap-Up in your inbox weekly: https://t.co/FKi1D2qtJQ Read More
On May 18, 2023, the U.S. House introduced a bill to require the Comptroller General to conduct a study on the impact of value-based purchasing arrangements on access to transformative therapies, including #RareDisease #gene therapies. Learn more at: https://t.co/qJT0lGY4wH Read More
The #NJ Assembly introduced a bill on May 18, 2023, to require health insurers to cover additional mammogram examinations, #GeneticTesting and #GeneticCounseling for individuals with a history or #genetic predisposition to #BreastCancer. Learn more at: https://t.co/wtoYVIoTZc Read More
On May 19, 2023, the #NY Senate introduced a bill to require health insurance polices to provide coverage for #GeneticTesting to identify a predisposing #genetic characteristic to individuals who were adoptees or placed in foster care. Learn more at: https://t.co/AtI5efC35I Read More
On June 6, 2023, from 10-1 PM ET, the #MA Joint Committee on Health Care Financing will conduct a public hearing regarding a bill to require coverage for rapid #WholeGenomeSequencing under certain circumstances for #Medicaid beneficiaries. Learn more at: https://t.co/MKejvYHQ70 Read More
A bill introduced by the #NY Senate on May 18, 2023, shall establish a Center for Autoimmune and Blood Disorder Research to perform research and improve treatment methods for #SickleCell disease. Learn more at: https://t.co/TxIjALDYrD Read More
On May 18, 2023, the #Alabama Senate introduced a bill that would require licensed midwives to administer certain #NewbornScreening tests for conditions included on the state’s newborn screening panel. Learn more at: https://t.co/pGdlLV4LKL Read More
The May 15-19th, 2023 GPH Wrap-Up of the Week includes 2 enacted state bills related to a #RareDisease Advisory Council and #newborn screening; and a proposed state rule related to #GeneticCounselors. Subscribe to receive the Wrap-Up in your inbox weekly: https://t.co/2abcQykGXI 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.