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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Solve your real-world data problems with support from this valuable network of global institutions.
Work with like-minded groups committed to better data use in areas like rare disease, cancer, and infectious disease.
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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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21 May 2020
The Finnish Act on the Secondary Use of Social and Health Data (552/2019) applies to data collected in social and healthcare organizations and governs processing for secondary purposes, including statistics, scientific research, and other activities. This brief describes the Act especially as it applies to scientific research.
The Finnish Act on the Secondary Use of Social and Health Data (552/2019) entered into force on 1 May 2019. It applies to data collected in social and healthcare organisations and governs processing for secondary purposes, including statistics, scientific research, and other activities. The Act applies to personal data (as defined in the GDPR), but also governs other data, such as clinical data of deceased patients. This brief describes the Act especially as it applies to scientific research.
Finnish social and health sector data have been available for scientific research for decades, but the new Act seeks to enable more efficient use. A pivotal change concerns the permissions process. Under the old rules, the individual social and health care providers typically made decisions about the use of data in their custody, and thus it was often necessary to obtain several authorizations for research relying on data from multiple sources. It was also possible that one organization would provide data but another would refuse.
From 1 April 2020, a new agency, Findata, will make these decisions where data are requested from more than one organization and in all cases where the request is for access to private sector health and social care data. The Act also sets time limits both for the permission and for delivering data from the organizations (the original data controllers) to Findata and eventually to the researchers, when previously there were no limits. As a rule, Findata will collect, combine and pseudonymise or anonymise the requested data set. Another novelty is that public sector data controllers must publish descriptions of available data and provide information services so that the potential data users can evaluate whether or not data are suitable for their needs, which may assist in data discoverability.
While seeking to facilitate more efficient data use, the Act also introduces material restrictions on how and where data can be processed to ensure protection of personal data. From 1 May 2021 onwards, data must be provided only via secure information processing environments approved by inspection bodies accredited in Finland and, as a general rule, the environment provided by Findata itself. These environments enable remote access to the raw data, but not exporting or downloading the data. Only data that Findata has irreversibly aggregated to ensure anonymity may be processed outside the secure environments. Another restriction is that Findata will control the release of results obtained from data analyses to ensure their anonymity. These restrictions may impede Finnish researchers’ participation in initiatives wishing to build international databases, for example. Researchers outside of Finland may not be willing to go through the accreditation process or store their data (and data analytics tools) in systems accredited in Finland.
The restrictions in the Act extend beyond GDPR requirements and apply also to non-personal data. They may, therefore, in some cases tip the balance from enabling research to obstructing it. Combining data from several sources may become overly complicated, for example, and doing meta-analyses instead may have disadvantages. The restrictions seem at odds with one of the main objectives of the GDPR – the free movement of data – and with the freedom of science protected by the Finnish Constitution and the EU Charter of Fundamental Rights, as well as the freedom of academic expression and information additionally covered by the Finnish Data Protection Act. Clarifications about the Act’s relation to other legislation such as the Finnish Biobank Act and the rules on clinical trials are also expected from the government. How well the new Act will serve researchers when compared to the old rules will largely depend on the quality of Findata’s services and its interpretations of the new Act.
Relevant GDPR Provisions
Tom Southerington is a lawyer conducting data protection research at the University of Turku and an ELSI expert with BBMRI ERIC. He works for the Finnish Biobanks – FINBB and the Hospital District of Southwest Finland.
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.