There are many different topics related to genetics policy that impact the delivery of genetic services. Topics can be general such as policy decisions related to genetics privacy to policy concerns for specific services such as newborn screening. Organizations ranging from genetics membership organizations to advocacy organizations share their thoughts about these topics through published policy statements.
To help clarify these topics and policy statements, we have developed short briefs that describe why a topic is a policy concern for the genetics community, list the current proposed legislation/regulation related to the topic, and share policy statements from organizations that present the organization’s stance on the topic.
Access to Genetics Services
Adoption and Genetic Testing
Cancer Genetic Testing
Clinical Care in Genetics
Direct-to-Consumer (DTC) Testing
Electronic Health Records/Electronic Medical Records
Family Health History
Funding of Genetics Research
Laboratory Developed Tests (LDT)
Newborn Hearing Screening
Open Access to Genetics Research
Pediatric Genetic Testing
The information contained in the policy areas is meant for educational purposes only. Sharing of policy statements is no way an endorsement of the stance by NCC (organization responsible for the Genetics Policy Hub).