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 latest from GA4GH

4 November 2019
GDPR Brief: Withdrawing Consent to Data Processing Under the GDPR

For research involving human participants, consent is a foundational principle in both law and ethics that supports participant autonomy.  In the context of data processing, and the GDPR specifically, consent is only one of several legal bases for the processing of personal data, including special-category data such as genomic and health-related data. That is, the data subject’s consent may not be the lawful basis under which data processing occurs. Nevertheless, seeking consent may remain an ethical requirement, even if it is not necessary for the purposes of data processing under the GDPR.

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1 November 2019
EJP RD Promotes Global Data Sharing to Bring Hope to Rare Disease Patients

The European Joint Programme on Rare Diseases (EJP RD) is a GA4GH Driver Project working towards the advancement and innovation of rare disease research, funding, diagnosis, treatments, and clinical trials. The Driver Project recently shared the story of a patient named Yakup, whose family had spent years searching for answers to a set of neurological symptoms that afflicted him since birth.

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21 October 2019 | Boston, USA
GA4GH 7th Plenary Meeting
The GA4GH 7th Plenary Meeting will be held on October 21-23, 2019 at the Hynes Convention Center, Boston, USA. The 7th Plenary will bring together organizations and stakeholders from the genomics and health community for two days of keynotes, talks, updates, and workshops that will focus on advancing development work for the immediate data sharing needs of the community.
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Organizational members including:

OICR
Broad Institute
Wellcome Sanger Institute
EMBL-EBI

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.