Mission & Founding Principles
The mission of the Global Alliance for Genomics and Health is to accelerate progress in human health by helping to establish a common framework of harmonized approaches to enable effective and responsible sharing of genomic and clinical data, and by catalyzing data sharing projects that drive and demonstrate the value of data sharing.
To achieve this mission, the alliance will work collaboratively with its membership to:
- Convene: Bring together stakeholders from different sectors and localities to share information, establish best practices, and enable interoperability across the broadest possible group.
- Catalyze Sharing of Data: Play an active role in catalyzing sharing of data among members to advance science as well as the positive impact of genomic information on human health.
- Create Harmonized Approaches: Identify existing standards and application programming interfaces (APIs) by consulting experts and studying best practices; and where needed, develop new standards and other interoperable tools and methods. These approaches (whether existing or new) will be broadly disseminated, and result in a common framework for representing data, for security and privacy, for ethics and regulation, and for interface with the clinical environment.
- Act as a Clearinghouse: Share best practices, cross-pollinate ideas and learning, and communicate with diverse communities. While we encourage participation by the entire biomedical research community, even those who don't join will be given access to the shared approaches to ethics and technical models for data sharing.
- Foster a Culture of Innovation and Discovery: Lower the barriers to parties working together and sharing data, enhancing innovation, and enabling discovery.
- Commit to Responsible Data Sharing: Work together to promote the highest standards for ethics and ensure that participants have the choice to responsibly and securely share their genomic and clinical data to advance human health.
The founding principles to which the Global Alliance for Genomics and Health has committed are:
- Respect for the data sharing and privacy preferences of participants
- Transparency of governance and operations
- Accountability to best practices in technology, ethics, and public outreach
- Inclusivity by partnering and building trust among stakeholders
- Collaboration to share data and information to advance human health
- Innovation in order to develop an ecosystem that accelerates progress
- Agility to ensure we act swiftly to benefit those suffering with disease
- Independence by structure and governance