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.
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Help create new global standards and frameworks for responsible genomic data use.
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Work with like-minded groups committed to better data use in areas like rare disease, cancer, and infectious disease.
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4 Nov 2019
For research involving human participants, consent is a foundational principle in both law and ethics that supports participant autonomy. In the context of data processing, and the GDPR specifically, consent is only one of several legal bases for the processing of personal data, including special-category data such as genomic and health-related data. That is, the data subject’s consent may not be the lawful basis under which data processing occurs. Nevertheless, seeking consent may remain an ethical requirement, even if it is not necessary for the purposes of data processing under the GDPR.
To understand withdrawing consent under the GDPR, it is essential to distinguish between consent to research and consent to data processing. For research involving human participants, consent is a foundational principle in both law and ethics that supports participant autonomy. In the context of data processing, and the GDPR specifically, consent is only one of several legal bases for the processing of personal data, including special-category data such as genomic and health-related data. That is, the data subject’s consent may not be the lawful basis under which data processing occurs. Nevertheless, seeking consent may remain an ethical requirement, even if it is not necessary for the purposes of data processing under the GDPR.
A corollary of free, informed, specific, and unambiguous consent to data processing is the right to withdraw consent at any time. The lawful basis chosen has particularly important consequences in the case of consent withdrawal. Where the data subject’s consent is the only lawful basis relied upon and communicated (in accordance with either Article 13 or Article 14), the data controller must stop processing such data upon receipt of a withdrawal and delete the personal data whose lawful basis for processing was the data subject’s consent.
Given the potential serious disruption to data processing activities, legal bases other than consent deserve consideration in the context of genomic and health-related research. Where personal data are processed under other lawful bases, there is no question of “withdrawing” consent to data processing as consent is not the lawful basis that justifies the processing. Accordingly, where a research participant withdraws their consent to participate in a research project, data processing may still continue under the GDPR so long as consent is not a lawful basis of processing for any data. In accordance both with research ethics and the GDPR’s principle of transparency, researchers should clearly describe to participants what effects their withdrawal of consent will have with regard to research participation and any future data processing. For example, withdrawing research consent may mean that no further data are collected but previously collected data will still be processed.
Even where consent is not a lawful basis on which a data controller relies, a data subject may still have other rights that affect data processing activities in similar ways to consent withdrawal. These include a right to erasure and a right to object. The right to erasure is not absolute: the data subject’s right to erasure will not apply in those circumstances where data are processed for research purposes with accompanying appropriate safeguards in accordance with Article 89(1) and erasure is likely to make impossible or seriously impair the research’s objectives. In regards to the right to object, when a data subject invokes their right to object, the data controller must stop the processing of the personal data at issue. To resume processing, the data controller must justify the further processing of the data. Possible justifications that are relevant to processing for research purposes include tasks in the public interest.
Relevant GDPR Provisions
Michael Beauvais works at the Centre of Genomics and Policy at McGill University in Montreal, Quebec, Canada.
For a list of previous briefs, please consult here.
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.