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
RT @NGEFSC: Tune in to watch our very own @MollyMartzke host the “Working with Families Virtually” round table talk presented by @DC_AMCHP… Read More
In the August 1st-5th GPH Wrap-Up of the Week, learn more about introduced Federal legislation related to #pharmacogenetic testing; an adopted #OR state rule regarding #NewbornScreening; and the inclusion of #MPSII on the #RUSP. Read More
RT @agavig: MPS II has been officially added to the newborn screening RUSP. We at @APHL and the New Disorders workgroup have developed a gu… Read More
The Secretary of @HHSGov approved the recommendation of #ACHDNC to add #Mucopolysaccharidosis Type II (MPS II) to the Recommended Uniform Screening Panel (#RUSP) on August 2, 2022. Learn more about this decision here: #NewbornScreening https://t.co/0YbpTHzOIl Read More
On July 27, 2022, the #US Senate introduced a bill to require @CMSGov to issue guidance on #Medicaid coverage of #pharmacogenetic testing to improve outcomes for beneficiaries with major depressive disorder or other mental health conditions. Learn more at: https://t.co/yKux3u7ris Read More
On August 1, 2022, the @OHAOregon adopted amendments to #Oregon Administrative Rules to update #NewbornScreening fees; and to permit the authorization of fee exemptions under certain circumstances. Learn more at: https://t.co/OkNW8D3c6x Read More
The July 25-29th GPH Wrap-Up of the Week discusses: a proposed state rule in #IA regarding #NewbornScreening; an enacted #WashingtonDC bill related to #MedicalFoods coverage; and a #MA state bill introduced to establish a commission on #SickleCell Disease. Read More
On July 26, 2022, the #Massachusetts House introduced a bill to establish a special legislative commission to examine and make recommendations regarding #SickleCell Disease in the state. Learn more at: https://t.co/9aeoIHIr04 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.