From 2004 to 2024, the Health Resources and Services Administration (HRSA) funded the National Coordinating Center for the Regional Genetics Networks (NCC). NCC developed and maintained the Genetics Policy Hub.

With the conclusion of NCC funding, the Genetics Policy Hub (GPH) will no longer be updated or maintained. Information on GPH should be used for historical reference only.

Funding Genetics Research

Updated On Sep 19, 2024

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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.

Introduction

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.

Scientific societies letter to the NIH on the revocation of a peer-reviewed research grant for studies of coronaviruses by EcoHealth Alliance

Link

https://cms.asbmb.org/getmedia/dbb22a26-ee0f-45e5-a1ed-13af91275f07/Support-Science-Sign-on-Letter_1.pdf

Organization

American Society for Biochemistry and Molecular Biology (ASBMB)

Subject

Funding

Date

Letter to NIH on funding for Model Organism Databases

Link

https://genetics-gsa.org/wp-content/uploads/2021/03/MOD-letter_for_NIH_032521.pdf

Organization

Genetics Society of America

Subject

Funding Genetic Research