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 Information on GPH should be used for historical reference only.
Genetics Policy Hub Webinar Series
Join us every other month for a webinar series that shares the latest genetics policy information from across the United States and includes invited speakers who provide real-world experience with the genetics policy.
Newborn Screening- September 26, 2023
On September 26, 2023, the fourth Genetics Policy Hub webinar was held to share the latest policy information related to newborn screening and to celebrate Newborn Screening Awareness Month! The webinar:
- Explained the current ways in which newborn screening policy is set across the United States;
- Described how you can find information about newborn screening policy in the Genetics Policy Hub; and
- Identified new and emerging policy trends in newborn screening.
Transcript (here)
Additional Materials
To accompany each Genetics Policy Hub webinar, a policy overview brief will be published to showcase the latest data trends. Download the Newborn Screening Policy Overview Brief below!
On August 7, 2023, the third Genetics Policy Hub webinar was held to share the latest policy information related to direct-to-consumer genetic testing. Webinar attendees:
- Learned about current policies related to direct-to-consumer genetic and genomic testing;
- Dissected implications of direct-to-consumer genetic/genomic testing; and
- Identified ethical, legal, and social issues surrounding genetics & genomics testing and therapies.
Access the webinar recording and associated materials to the right and below.
Transcript (here)
Additional Materials
To accompany each Genetics Policy Hub webinar, a policy overview brief will be published to showcase the latest data trends. Download the Direct-to-Consumer Genetic Testing Policy Overview Brief below!
On May 19, 2023, in celebration of Public Health Genetics and Genomics Week, the Genetics Policy Hub partnered with the New England Regional Genetics Network (NERGN) to hold a GPH Webinar Series about the latest policy information related to genetics privacy. The webinar:
- Identified current policies related to genetics privacy.
- Described how you can find information about genetics privacy in the Genetics Policy Hub.
- Allowed attendees to engage in a conversation about the different facets of genetics privacy.
Find the webinar recording, the PPT, and the policy brief that provides an overview of genetics privacy policies as of May 2023 on this page!
Transcript (here)
Additional Materials
To accompany each Genetics Policy Hub webinar, a policy overview brief will be published to showcase the latest data trends. Download the Genetics Privacy Policy Overview Brief below!
On April 4, 2023, the Genetics Policy Hub partnered with the Southeast Regional Genetics Networks (SERN) to share the latest information about medical foods coverage from across the United States. The webinar:
- Described the importance of medical foods coverage.
- Identified current policies related to medical foods.
- Identified lessons in improving medical foods coverage that can be used in providers work.
Find the webinar recording, the PPT, and the policy brief that provides an overview of medical food policies as of March 2023 on this page!
Transcript (here)
Additional Materials
To accompany each Genetics Policy Hub webinar, a policy overview brief will be published to showcase the latest data trends. Download the Medical Foods Policy Overview Brief below!