Policy Issues

Genetic Alliance guides individuals, families, communities, and disease advocacy organizations as they navigate policy decisions for biomedical research and healthcare services. Genetic Alliance has led consumer engagement in health policy developments since 1986. As exemplified by the passage of the Genetic Information Nondiscrimination Act in 2008 and the Supreme Court ruling on gene patenting in June 2013, Genetic Alliance maintains a powerful presence in policy decisions related to genetics.  

Please use this website as a resource as you make your own impact on the world of genetics, whether you are a family member of an individual with a genetic disorder or the leader of a disease advocacy organization. The issues below are key to policy discussions in genetics. Please click on an issue for a brief overview, and learn how you can play a role. 

• Human Research Protections
• Genetic Discrimination
• Health Information Technology
• Newborn Screening
• Genetic Testing
• Open Access
• Gene Patenting
• Gene Editing
• Regulatory