National Consumer Center for Genetics Resources and Services
Genetic Alliance is the National Consumer Center for Genetics Resources and Services through a cooperative agreement from the Genetic Services Branch of the Maternal and Child Health Bureau/HRSA/DHHS. Recognizing that individuals suffer from delays in the service pipeline, the ultimate benefit realized by this five-year cooperative agreement will be the transformation of the research and services systems. The Center has four goals:
- Transform advocacy to release the potential of all organizations;
- Enable informed decision-making about genetic research, trials, and services;
- Incentivize new structures that encourage expanding shared resources;
- Build and maintain partnerships that enable acceleration of service delivery to individuals and families in need of genetic technologies and treatments.
We open space for productive dialogue and develop tools for resource-sharing.
Incremental benefits have already been shown:
- Diffusion of the best attributes of advocacy into communities, professional societies, and beyond to enable more effective work by all members of the network
- Shared infrastructure to allow freeing of resources to focus on content work
- Increased literacy levels for consumers to make better decisions about their own healthcare and for other stakeholders to make better decisions about the systems that sustain the research and services enterprise
- An understanding of the importance of pervasive open access, allowing resources and information to be shared and the precompetitive line to be moved back
- Partnerships that build on these new paradigms and release tremendous potential energy to accelerate the development of more functional systems.
This project is supported by cooperative agreement U33MC0795 with the Genetic Services Branch of the Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA). The content of this webpage is solely the responsibility of Genetic Alliance and does not necessarily represent the official views of HRSA.
