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Learn how GA4GH helps expand responsible genomic data use to benefit human health.
Learn how GA4GH helps expand responsible genomic data use to benefit human health.
Our Strategic Road Map defines strategies, standards, and policy frameworks to support responsible global use of genomic and related health data.
Discover how a meeting of 50 leaders in genomics and medicine led to an alliance uniting more than 5,000 individuals and organisations to benefit human health.
GA4GH Inc. is a not-for-profit organisation that supports the global GA4GH community.
The GA4GH Council, consisting of the Executive Committee, Strategic Leadership Committee, and Product Steering Committee, guides our collaborative, globe-spanning alliance.
The Funders Forum brings together organisations that offer both financial support and strategic guidance.
The EDI Advisory Group responds to issues raised in the GA4GH community, finding equitable, inclusive ways to build products that benefit diverse groups.
Distributed across a number of Host Institutions, our staff team supports the mission and operations of GA4GH.
Curious who we are? Meet the people and organisations across six continents who make up GA4GH.
More than 500 organisations connected to genomics — in healthcare, research, patient advocacy, industry, and beyond — have signed onto the mission and vision of GA4GH as Organisational Members.
These core Organisational Members are genomic data initiatives that have committed resources to guide GA4GH work and pilot our products.
This subset of Organisational Members whose networks or infrastructure align with GA4GH priorities has made a long-term commitment to engaging with our community.
Local and national organisations assign experts to spend at least 30% of their time building GA4GH products.
Anyone working in genomics and related fields is invited to participate in our inclusive community by creating and using new products.
Wondering what GA4GH does? Learn how we find and overcome challenges to expanding responsible genomic data use for the benefit of human health.
Study Groups define needs. Participants survey the landscape of the genomics and health community and determine whether GA4GH can help.
Work Streams create products. Community members join together to develop technical standards, policy frameworks, and policy tools that overcome hurdles to international genomic data use.
GIF solves problems. Organisations in the forum pilot GA4GH products in real-world situations. Along the way, they troubleshoot products, suggest updates, and flag additional needs.
NIF finds challenges and opportunities in genomics at a global scale. National programmes meet to share best practices, avoid incompatabilities, and help translate genomics into benefits for human health.
Communities of Interest find challenges and opportunities in areas such as rare disease, cancer, and infectious disease. Participants pinpoint real-world problems that would benefit from broad data use.
Find out what’s happening with up to the minute meeting schedules for the GA4GH community.
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All GA4GH standards, frameworks, and tools follow the Product Development and Approval Process before being officially adopted.
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4 Mar 2020
Access to large amounts of flexible computing resource can be of interest to organisations with large data sets, such as genomic databases. Developments in personalized medicine and AI enhance the relevance of cloud computing for genomic and health-related research.
Cloud computing can be defined as “a digital service that enables access to a scalable and elastic pool of shareable computing resources“. This access to large amounts of flexible computing resource can be of interest to organisations with large data sets, such as genomic databases. Developments in personalized medicine and AI enhance the relevance of cloud computing for genomic and health-related research.
Research organisations will often process personal data (e.g. genetic data and health data) and have to ensure compliance with the GDPR. Two key provisions for cloud computing are: 1) appointing a processor; and 2) transfers of personal data to third countries (i.e. those outside the EEA).
The research organisation which determines the purposes for and means by which genomic data are processed will be a controller. A cloud computing provider will be a processor – a “…person … which processes personal data on behalf of the controller” and which must not process the personal data save as instructed by the controller.
The research organisation is responsible for selecting a processor which is able to process personal data in accordance with the GDPR. This is not simply a matter of contractual commitments; the research organisation must also assess the suitability of the processor before appointment. Factors to consider include the type of processing (e.g. storage, structuring), risks to data subjects and mechanisms to meet data subject rights.
The research organisation must further ensure that the processing is “governed by a contract or other legal act under Union or Member State law”. This contract must contain details of the personal data processing carried out by the processor and the obligations and rights of the research organisation. The GDPR stipulates provisions which must be included in the contract – such as security measures, assistance for the research organisation, restrictions on sub-contracting, audit rights and obligations to delete personal data at the end of the processing services, or to return it to the research organisation. The GDPR anticipates standard contractual clauses being adopted by the Commission or supervisory authorities. So far, only the Danish authority has adopted standard clauses.
A processor which does not comply with the data processing agreement appointing it may not just risk being in breach of contract. If this means that the processor has, in fact. determined the purposes and means of processing, then it will be considered a controller – with the heightened obligations and liability of a controller.
If cloud computing will result in processing of personal data outside the EEA, the rules on transfers of personal data will apply. This may mean ensuring transfers are made on the basis of an adequacy decision, or are subject to appropriate safeguards – principally standard contractual clauses, or binding corporate rules. These may be affected by pending legal cases.
Applicable national rules relevant to hosting health data on servers (e.g. as in France) must also be met by the cloud computing provider.
Further Reading
Relevant GDPR Provisions
Ruth Boardman is partner at Bird & Bird LLP and co-heads the International Privacy and Data Protection Group.
See all previous briefs.
Please note that GDPR Briefs neither constitute nor should be relied upon as legal advice. Briefs represent a consensus position among Forum Members regarding the current understanding of the GDPR and its implications for genomic and health-related research. As such, they are no substitute for legal advice from a licensed practitioner in your jurisdiction.