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.
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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.
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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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3 Aug 2020
Under the GDPR, personal data may only be kept if strictly necessary to fulfil the purpose of processing. The special provisions of the GDPR on data retention for research are, however, not a carte blanche to hang on to all research data.
Under the GDPR, personal data may only be kept if strictly necessary to fulfil the purpose of processing (Art. 5(1)(e) and Recital 39). Based on Art. 5(1)(b), data can be processed further beyond the initial purpose for research. In accordance with this provision, Art. 5(1)(e) allows also a longer retention beyond the original purpose if data is used exclusively for scientific research. Such retention requires that organisational and technical safeguards be in place in accordance with Art. 89(1). In principle, data used purely for research purposes may be kept indefinitely. (But this position is not unreservedly shared by all data protection authorities.)
The special provisions of the GDPR on data retention for research are, however, not a carte blanche to hang on to all research data. The following conditions need to be complied with:
The continued retention must not conflict with the conditions under which the data were obtained. If data are kept beyond the initial purpose, they should only be used for scientific research. Therefore, a robust framework of technical and organisational measures needs to be in place to prevent any other use that may take place either intentionally or accidentally. The utility of data for research should also be evidenced and linked to the retention policy.
While there is no limitation in the GDPR on the time frame for keeping data for scientific research, the provisions relating to information that must be given to data subjects (Articles 13 and 14; Recital 39) require that criteria must be defined as to how long the data will be kept if no definite period is applied. The Article 29 Working Party’s Guidelines on transparency state that a notice specifying “as long as necessary” is not sufficient. Measurable criteria regarding how long data are useful for research must be established and, where relevant, also for keeping pseudonymisation keys. Potential criteria to be fulfilled are:
Research institutions also need to define a time frame and establish mechanisms to periodically review that the retention criteria are still fulfilled.
In line with the “data protection by design” principle of Article 25, these considerations on data retention must be made upfront before starting the data collection and documented. This also includes a decision (and communication to the data subject) if data will be deleted or anonymised at the end. Data protection by default implies that a defined retention period should be assumed. Therefore, a data retention policy must specify how it is established that data can be kept for a yet undefined timeframe, definition of the relevant retention criteria throughout the data’s life cycle and the corresponding review mechanisms. Following GDPR Article 13/14, the criteria and the related review procedures need to be communicated to the data subjects including notice that this practice may lead to an indefinite retention.
Relevant GDPR Provisions
Regina Becker is an ELSI expert at the ELIXIR-Luxembourg, hosted by the Luxembourg Centre for Systems Biomedicine (LCSB) at the University of Luxembourg.
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.