Access to Human Data Makes a Difference

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27 Jun 2019

Access to Human Data Makes a Difference

Group leading the application: 
Meeting agenda: 

Collaborative session notes: 


0:00 - 0:10 Introduction

0:10 - 0:20 Presentation of the 1+ Million Genome Project (Bengt Persson)

0:20 - 0:30 Status of Federated EGA (European Genome/phenome Archive) (Niclas Jareborg)

0:30 - 0.40 Distributed analysis and the  Personal Health Train (Rob Hooft)

0:40 - 0.50 GO-FAIR initiatives for sensitive data (Luiz Bonino)

0:50 - 1:00 Standards in health records (Edwin Morley-Fletcher)

1:00 - 1:10 Legal aspects with respect to the GDPR legislation (Edwin Morley-Fletcher)

1:10 - 1:20 Updates from the Block-chain Health Working Group 

1:20 - 1:30 Discussion and Gap Analysis


Meeting objectives: 

In this session we will present and discuss the current status of handling sensitive human data, particularly in light of the European 1+ Million Genome Project. The ELIXIR Bridging Force IG will present achievements on the Federated European Genome/phenome Archive, and the Health Data IG will present achievements in standards in electronic health records and legal aspects. An update from the Block-chain Health WG will also be provided.


The session will answer questions like:

How does Data make the Difference?

How can we have human data make the most difference?

What does ELIXIR bring to this?

Draw out the stack of technologies needed - what is in place?  Data, technologies, access.

What other things are needed?  


The session will end with a “Gap analysis” with input from RDA members, partners and participants.


Target Audience: 

Data users in the life sciences, especially users of (sensitive) human data. This may include researchers, program managers, policy makers and funding bodies.



If possible, we would prefer our session to be placed 25 Oct or 24 Oct.

Brief introduction describing the activities and scope of the group(s): 

The ELIXIR Bridging Force IG bridges the activities of the ELIXIR “Data For Life” research infrastructure in Europe with the activities of RDA in two directions: bringing in expertise gained in European bioinformatics into RDA, and bringing RDA experience to the benefit of the European Life Science researchers. The ELIXIR Bridging Force IG was one of the first discipline specific IGs of the RDA.

The Health Data IG relates to privacy and security issues in Healthcare. 

The FAIRsharing WG has produced one of the 12 outputs recommended by RDA, encompassing: a registry of curated and interlinked records on standards (for identifying, reporting, and citing data and metadata), databases, repositories (and knowledge-bases) and data policies (from journals, publishers, funders and other organizations); and related recommendations to guide users and the producers of standards and databases to select and describe these resources, or to recommend them in data policies. With a growing adoption list (a ‘live’ updated version can be found here:, the FAIRsharing WG is focusing on refining and expanding connections with other RDA IGs and WGs relevant to its mission and scope, as has already happened with several domain-specific (e.g. ELIXIR, Biodiversity, IGAD) and generic groups (e.g. Standardization of Journal Policies). This joint session with ELIXIR continues this tradition. 

Type of Meeting: 
Informative meeting
Group chair serving as contact person (responsible for the agreement with the corresponding groups):