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.
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.
Learn more about upcoming GA4GH events. See reports and recordings from our past events.
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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.
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View the latest GA4GH updates, Genomics and Health News, Implementation Notes, GDPR Briefs, and more.
Discover all things GA4GH: explore our news, events, videos, podcasts, announcements, publications, and newsletters.
5 Dec 2018
In the eyes of the GDPR, not all data are equal. Rather, ‘special categories’ of personal data are given additional protection. In the December 2018 installment of the GDPR Forum Brief, Johan Ordish and Alison Hall of the PHG Foundation discuss those of relevance to the genomics and health community.
In the eyes of the GDPR, not all data are equal. Rather, ‘special categories’ of personal data are given additional protection. For our purposes, there are three special categories of note:
The boundaries of ‘genetic data’ and ‘data concerning health’ are particularly indistinct. Of two possible interpretations of ‘genetic data’, the latter seems more probable:
Notwithstanding these definitional questions, the lawful processing of special category datarequires both an Article 6 legal basis and Article 9 derogation. However, some civil law jurisdictions interpret the Article 9 derogations as superseding this requirement to have an Article 6 legal basis. Health, genetic, and biometric data are unique amongst the special categories in allowing Member States to introduce further conditions on their processing.
Data controllers should select a derogation that is compatible with the purpose of their processing and the legal basis they rely upon. Depending on the purpose of processing, clinical and research genomics will usually invoke derogations (g) to (j) of Article 9(2).
To provide UK examples, the GDPR Working Group counsels that NHS organisations utilise the Article 6(1)(e) ‘public interest’ legal basis with the Article 9(2)(h) derogation on ‘preventative or occupational medicine’ or the Article 9(2)(i) derogation on ‘public health.’ Regarding research, the NHS Health Research Authority recommends that the Article 6(1)(e) legal basis be paired with the Article 9(2)(j) derogation on scientific or research purposes.
In certain circumstances, invoking a derogation (e.g. Article 9(2)(j)) frees data controllers from some obligations to their data subjects (Article 89(2)). However, if one relies upon the Article 9(2)(j) research derogation, the rights and freedoms of data subjects must be safeguarded (Article 89(1)). Data controllers must be cognizant of the potential risks to these rights and freedoms (Recital 75) when carrying out data protection impact assessments, especially when processing genetic and health data (Article 35 and Recital 91).
Alison Hall and Johan Ordish work for the PHG Foundation, a think tank with a special focus on genomics and personalised medicine that is a part of the University of Cambridge.
Relevant GDPR Provisions
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.