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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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1 Jul 2019
The GDPR now explicitly mentions, and even defines, pseudonymisation, namely the processing of personal data so they can no longer be attributed to a specific data subject without the use of additional information (provided certain measures are in place to prevent re-identification). Coding is commonly used in health research and can, in some cases, act as a pseudonymisation technique. The question arises as to whether pseudonymised data are no longer personal data and hence no longer subject to the GDPR.
The GDPR now explicitly mentions, and even defines, pseudonymisation, namely the processing of personal data so they can no longer be attributed to a specific data subject without the use of additional information (provided certain measures are in place to prevent re-identification). Coding is commonly used in health research and can, in some cases, act as a pseudonymisation technique.
The question arises as to whether pseudonymised data are no longer personal data and hence no longer subject to the GDPR.
The Article 29 Working Party opined in 2007, in the pre-GDPR era, that for clinical trial data, this can be the case when the re-identification data are held by a different entity and both are subject to a specific scheme prohibiting re-identification and with appropriate measures in place to prevent this. It noted that the then-adequate EU–U.S. Safe Harbour Scheme explicitly stated that pseudonymised pharmaceutical research data are not personal data.
But the Working Party’s more recent 2014 guidance suggests that pseudonymised data remain personal data, deeming this fact “especially relevant in the context of scientific, statistical or historical research.”
The question might at first appear to be definitively resolved by Recital 26 of the GDPR, adopted in 2016, which similarly states that pseudonymised data “should be considered to be information on an identifiable natural person.”
The European Court of Justice’s 2016 Breyer decision, however, appears to allow some room for this not to be the case. The case asked whether certain data within the definition of pseudonymous (although the Court never used this term, and the data had not deliberately been pseudonymised) remained personal data. They remained personal data, the Court held, but only because the entity holding them had the legal means to identify the data subject (interpreting this notion very broadly).
Health Research Authority guidance in the United Kingdom in 2018 went so far as to state that in research, pseudonymised data are not personal data even when re-identifiable within the same organisation (in Example 4 of the linked document).
Given these contradictions, commentary by the UK Information Commissioner’s Office (ICO) during the GDPR legislative process appears prophetic. The ICO warned that the GDPR’s approach to pseudonymisation is confusing: defining the concept of personal data as a function of the means reasonably likely to be used to identify an individual squares poorly with insistence that pseudonymised data are invariably personal data.
Because of the continuing uncertainty in this area, it is recommended to consult any guidance from the data protection authority of one’s own Member State, or to seek legal advice when considering whether to treat pseudonymised data as anonymous.
Further Reading
Relevant GDPR Provisions
Mark Phillips is a lawyer with a background in computer science, and an academic associate at McGill University’s Centre of Genomics and Policy. He advises clients on and writes about various data protection issues.
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.