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.
To guide our collaborative, globe-spanning alliance, GA4GH relies on a Standards Steering Committee and an Executive Committee.
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 four 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.
See all our products — always free and open-source. Do you work on cloud genomics, data discovery, user access, data security or regulatory policy and ethics? Need to represent genomic, phenotypic, or clinical data? We’ve got a solution for you.
All GA4GH standards, frameworks, and tools follow the Product Development and Approval Process before being officially adopted.
Learn how other organisations have implemented GA4GH products to solve real-world problems.
Help us transform the future of genomic data use! See how GA4GH can benefit you — whether you’re using our products, writing our standards, subscribing to a newsletter, or more.
Help create new global standards and frameworks for responsible genomic data use.
Align your organisation with the GA4GH mission and vision.
Solve your real-world data problems with support from this valuable network of global institutions.
Work with like-minded groups committed to better data use in areas like rare disease, cancer, and infectious disease.
Share your thoughts on all GA4GH products currently open for public comment.
Solve real problems by aligning your organisation with the world’s genomics standards. We offer software dvelopers both customisable and out-of-the-box solutions to help you get started.
Learn more about upcoming GA4GH events. See reports and recordings from our past events.
Speak directly to the global genomics and health community while supporting GA4GH strategy.
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Questions? We would love to hear from you.
Read news, stories, and insights from the forefront of genomic and clinical data use.
Attend an upcoming GA4GH event, or view meeting reports from past events.
See new projects, updates, and calls for support from the Work Streams.
Read academic papers coauthored by GA4GH contributors.
Listen to our podcast OmicsXchange, featuring discussions from leaders in the world of genomics, health, and data sharing.
Check out our videos, then subscribe to our YouTube channel for more content.
View the latest GA4GH updates, Genomics and Health News, Implementation Notes, GDPR Briefs, and more.
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1 Nov 2018
The GDPR has a global territorial reach. Article 3 states that the GDPR applies to the processing of personal data in the context of the activities of an establishment (e.g. office, site) of an organization in the European Economic Area (EEA, which constitutes the 28 EU Member States as well as Iceland, Liechtenstein, and Norway), regardless of whether the processing takes place in the EEA or not.
The GDPR has a global territorial reach.
Article 3 states that the GDPR applies to the processing of personal data in the context of the activities of an establishment (e.g. office, site) of an organization in the European Economic Area (EEA, which constitutes the 28 EU Member States as well as Iceland, Liechtenstein, and Norway), regardless of whether the processing takes place in the EEA or not.
The GDPR also applies to the processing of personal data of data subjects (e.g. research participants) situated in the EEA by a person or organization not established in the EEA, where the processing activities are related to:
Subject to a few exceptions, under Article 27, organizations subject to the GDPR’s long-arm jurisdictional reach have to appoint a “representative” in the EEA to act as their Europe-facing point of contact for individuals and local data protection authorities. The representative must be in one of the EEA Member States where the data subjects, whose data are being processed, are situated. If an organization conducts, for example, clinical trials in different Member States at different times, it may need to change its representative from time to time.
Under the “offering goods or services” test, it must be apparent that the organization intends to reach individuals in the EEA – e.g. by targeting through localized websites in an EEA language (not also an international language), with localized URLs or which have local examples. This could apply to a university in the US offering genomic testing to people in the EEA via localized websites.
If an organization monitors individuals in the EEA, then it is subject to the GDPR under the second limb. This would apply to data collected via wearables. In this case, the GDPR always applies – there is no need for the organization to be targeting individuals in the EEA.
It remains unclear if the GDPR will apply in a context where consumers, customers, or research participants of non-EEA-based organizations temporarily reside in the EEA (on holiday, work, or otherwise) and have some (incidental transmissions) of their data collected through digital technology, such as wearables, mobile phones, or other personal electronic devices.
Relevant GDPR Provisions
Edward Dove is a Lecturer in Law at the University of Edinburgh. His primary research interests are in the areas of regulation of biomedical research, research ethics oversight, health-related data access and sharing, and governance of international research collaboration.
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.