Funding Genetics Research

Updated On Feb 24, 2022

This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.


Both federal and state governments fund genetic care and research.  For example, the National Institutes of Health (NIH) has spent millions of dollars to support the All of Us Research Program and the Undiagnosed Diseases Network (UDN).  At the state level, states support newborn screening programs and provide genetic care through Medicaid.  

Legislation and Regulation

Are you interested in learning what your state’s government or the federal government are currently proposing for either legislation or regulation? Check out Legislative/Tracking system for up-to-date information and subscribe to our Twitter channel to get the latest updates in your pocket.

Policy Positions

Organizations working within the genetics community (national genetic organizations, advocacy organizations, etc.) have published positions on open access. Explore these position statements below. 
Position Statements by Organizations
Scientific societies letter to the NIH on the revocation of a peer-reviewed research grant for studies of coronaviruses by EcoHealth Alliance
American Society for Biochemistry and Molecular Biology (ASBMB)
Letter to NIH on funding for Model Organism Databases
Genetics Society of America
Funding Genetic Research
March 1, 2021