Enabling responsible genomic data sharing for the benefit of human health
The Global Alliance for Genomics and Health (GA4GH) is a policy-framing and technical standards-setting organization, seeking to enable responsible genomic data sharing within a human rights framework.
The GA4GH Regulatory and Ethics Work Stream revised Consent Policy is now open for public comment until September 6, 2019.
The latest from GA4GH
Article 35 of the GDPR requires that data controllers perform a Data Protection Impact Assessment (DPIA) before processing personal data if the processing “is likely to result in a high risk to the rights and freedoms of natural persons.”
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Under the GDPR, organizations within a given sector or representative body can develop Codes of Conduct to help overcome key data protection challenges. Developing an approved Code is a serious endeavour and difficult to achieve, but can be of great benefit, including by better enabling responsible international data sharing in genomics and health-related research. Such Codes complement rather than supersede the GDPR.
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How we work
GA4GH Work Streams develop standards and tools that are founded on the Framework for Responsible Sharing of Genomic and Health-Related Data. Their work is designed to enable international genomic data sharing based on the specific needs of clinical and research Driver Projects — real-world genomic data initiatives sourced from around the globe.
