About us
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.
The Technical Alignment Subcommittee (TASC) supports harmonisation, interoperability, and technical alignment across GA4GH products.
Find out what’s happening with up to the minute meeting schedules for the GA4GH community.
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.
Want to advance both your career and responsible genomic data sharing at the same time? See our open leadership opportunities.
Join our international team and help us advance genomic data use for the benefit of human health.
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.
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View the latest GA4GH updates, Genomics and Health News, Implementation Notes, GDPR Briefs, and more.
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3 Jun 2019
Article 89(2) allows derogations from data subject rights where personal data are processed for scientific/historical research or statistical purposes. Article 89(3) allows derogations where data are processed for archiving purposes in the public interest. This Brief only considers provisions relating to scientific research.
Article 89(2) allows derogations from data subject rights where personal data are processed for scientific/historical research or statistical purposes. Article 89(3) allows derogations where data are processed for archiving purposes in the public interest. This Brief only considers provisions relating to scientific research.
Member states may derogate from the rights of access, rectification, restriction and to object. The right to erasure contains its own exemption for processing for scientific purposes (Art. 17(3)(d)). The derogations must only apply to the extent this is necessary to avoid data subject rights making it impossible to conduct the scientific research, or seriously impairing this. Derogations are subject to the conditions and safeguards in Art. 89(1), requiring technical and organizational measures to ensure data minimisation and only permitting use of identifiable data if the research purpose cannot be fulfilled with anonymous or pseudonymous data.
Many member states have used Art. 89(2) to introduce derogations from individual rights and have introduced consequential additional safeguards. In Germany, it must remain impossible to draw direct conclusions about specific persons. In the UK results must not be available in identifiable form. In the Netherlands, research institutions may choose not to apply rights of access, rectification and restriction – provided they ensure that the personal data can only be used for statistical or scientific purposes.
Notwithstanding the general ban on processing special category data, member states can allow processing for scientific research (Art. 9 (2)(j). Art. 89 does not constitute a separate authorization, but the safeguards in Art. 89(1) are also required for such processing and there are often supplemental member state safeguards introduced in connection with Art. 9(2)(j).
In Germany, when processing is based on Art. 9(2)(j), a proportionality test exists to determine whether controllers’ interests significantly outweigh data subjects’ interests. In the UK, the research must be in the public interest, must not be likely to cause damage or distress, and measures concerning a particular data subject can only be taken if approved medical research is being undertaken. Spain also has additional requirements for technical and organisational measures, approvals and documentation.
Lastly, readers should note Art.9(4) authorizing member states to adopt further conditions affecting the processing of genetic, biometric, and health data; such conditions may apply in addition to those outlined above. This may be the topic of another Brief.
Again, processing of data for scientific research remains subject to national rules, which must always be checked.
Further Reading
Dove, ES 2018, ‘The EU General Data Protection Regulation: Implications for international scientific research in the digital era. Journal of Law, Medicine and Ethics, vol. 46, no. 4, pp. 1013-1030. Available here.
European Archives Group 2018, Guidance on data protection for archive services. EAG Guidelines on the implementation of the General Data Protection Regulation in the archive sector. Available here.
Molnár-Gábor, F 2018, Germany: a fair balance between scientific freedom and data subjects’ rights? Human Genetics, vol. 137, no. 8, pp. 619-626. Available here.
Comparative chart on member states’ implementations
Relevant GDPR Provisions
Article 9(2)(i) – Processing of special categories of personal data
Art. 9(4) – Processing of special categories of personal data
Art. 89 – Safeguards and derogations relating to processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes
Ruth Boardman is partner at Bird & Bird LLP and co-heads the International Privacy and Data Protection Group.
Fruzsina Molnar-Gabor is research group leader at the Heidelberg Academy of Sciences and Humanities and lecturer at the Legal Faculty of the Heidelberg University.
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.