The Global Alliance for Genomics and Health (GA4GH) is an international, non-profit alliance of 600+ organizations working to create frameworks and standards to enable the responsible, voluntary, and secure sharing of genomic and health-related data. Find genomic data, regulatory and ethics, and data security toolkits on the GA4GH website.
The Genomic Data Toolkit produced by the Global Alliance for Genomics and Health (GA4GH) includes resources to support genomic data sharing such as machine readable consent guidance, a catalogue of available tools for documenting family health history information, a data use ontology, standards for building data repositories, and downloadable APIs.
The Regulatory & Ethics Toolkit produced by the Global Alliance for Genomics and Health (GA4GH) contains ready-to-use regulatory and ethics guidance for genomic and health-related data sharing including consent, data privacy and security, and copyright policies.
The Data Security Toolkit produced by the Global Alliance for Genomics and Health (GA4GH) offers ready-to-use data security guidelines for genomic data sharing.
This project will support two workshops to establish a Legal Research Agenda--a detailed and concrete statement of the science and technology associated with the Human Genome Initiative and of the legal issues that have emerged or are likely to emerge as a result of the Initiative.
This study will focus on setting priorities in the screening, testing, counseling, and treatment of pre-symptomatic and contingent genetic conditions. Under the assumption that unlimited resources will not be immediately available for smoothly introducing genome research into the clinical arena, this project will develop an ethically sound set of priorities to guide this process.