The issues actually encountered in sharing COVID-19 health related data across borders: lack of solutions or lack of dialogue ?

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26 Jan 2021
Group(s) submitting the application: 
Meeting objectives: 

Context: During the first work of the working group (April-June 2020) legal and ethical considerations related to COVID-19 data sharing were explored and were introduced across the document produced and in a specific chapter (chapter 10) of the RDA-COVID-19 recommendations and guidelines on data sharing. Research Data Alliance. 2020. DOI: https://doi.org/10.15497/rda00052 and other ouputs of the RDA-COVID-19 WG.  https://www.rd-alliance.org/node/68704/outputs .

During the second part of 2020, the work was oriented on specific issues linked to  a  Court of Justice of the European Union landmark decision from July 16th, 2020 (known as Shrems II), that has potentially significant effects on the ability of researchers to legitimately transfer personal data for health research purposes from countries inside the EU, to third countries outside the EU. An output from this work is an article currently under review and available as pre-print : International transfers of health research data following Schrems II: A problem in need of a solution: https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3688392 .

The current work seeks 1) to map the legal and ethical issues actually encountered by researchers and other stakeholders in sharing health data, especially COVID-19 related data, due to legal/ethical difficulties; 2) to explore whether the existing recommendations and guidelines address them in a sufficient way to solve them; 3) to explore whether new ones are needed especially in the context of the second and third wave of the pandemic.

The objectives of the session are as follows:

  1. Gather information / case studies on such actual difficulties
  2. Exchange across disciplines on such difficulties and harvest good practices in addressing them
  3. Identify through this dialogue which stakeholders should be addressed in order to make progress in such sharing.

 How? by stimulating discussion with the audience on the current state of such difficulties and using a grid that will be prepared by the organisers of the session that can be supplemented during the session, giving details on stakeholder involved, level of the blocking factor as perceived and as documented (legal, procedural, lack of information, lack of help etc.) ; the session will have two parts: examples of questions encountered and how they can be/are/were addressed through short presentations (Part 1) and an interactive discussion (Part 2).

Meeting agenda: 

Collaborative session notes: https://docs.google.com/document/d/1jsB0FKD49VBK8L7yHusxN_-Xjkkkywe6shqKSd9FHIw/edit?usp=sharing 

Part 1: Presentations (45-50­­­ min)

Topic 1: Cases or questions encountered as obstacles to data sharing attributed to legal/ethical aspects: researcher / data steward level

Speakers to be confirmed; for the moment accepted talk by Claudia Bauzer Medeiros (Brazil); another speaker is to be confirmed. Maximum 3 speakers, 5-8 min to describe a case

Topic 2: Cases or questions encountered as obstacles to data sharing attributed to legal/ethical aspects: policy maker / legal office

Speakers to be confirmed; for the moment accepted talk by Dara Hallinan (Germany); another speaker is to be confirmed. Maximum 3 speakers, 5-8 min to describe a case

 Topic 3: Cases or questions encountered as obstacles to data sharing attributed to legal/ethical aspects: funders / editors

Speakers to be confirmed; for the moment accepted talk by Francis P. Crawley (Belgium); another speaker is to be confirmed. Maximum 3 speakers, 5-8 min to describe a case

Part 2: Interactive discussion: 40-45 min (Moderators: Anne Cambon-Thomsen (France), Brian Pickering (UK), Alexander Bernier (Canada))

  1. To get proposals from audience of other examples of issues and of ways / paths or rules to be efficient in addressing them; especially a grid will be proposed based on the existing RDA COVID-19 recommendations and gaps will thus be easier to pinpoint
  1. To make a typology of such issues actually encountered in order to  identify better the level of the difficulty in the data like cycle and stakeholders at stake
  2. To start define recommendations or clarification of processes targets n order to better plan the next phase of the work of the group, in line with community needs.

Conclusion:

Wrap-up and next actions

Target Audience: 

Researchers; Data service providers; Data stewards; ethics committees members; legal officers of research institutions; staff of health authorities; data protection authorities; those managing data repositories. Standards bodies governing procedures relevant to FAIR ; policymakers, research funders, institutions, publishers and others defining data policy

Group chair serving as contact person: 
Brief introduction describing the activities and scope of the group: 

 The RDA-COVID-19 legal-ethical working group is an interdisciplinary group set up first as a sub-group of the 2020 RDA COVID-19 working group. As described above it addresses in terms of reference documents, guidelines and recommendations the legal and ethical aspects in sharing data related to COVID-19, with the objective of preparing paths in case of future pandemics. Beyond contributing to the document produced by the whole WG COVID-19 with all its sub-groups, it sustains a follow-up work in order to update the issues to address and draw conclusions from confronting to the reality of the evolving pandemic and the documents endorsed in June 2020.  (See above  description of the work done and current work, in objectives)

Short Group Status: 

Established working group since April 2020; Outputs so far: recommendations with other COVID-19 WG; publication;

Estimate of the required room capacity (Hybrid plenary): 
A 50-60 people for virtual session, with possibility of up to three breakout rooms (all virtual)
Type of Meeting: 
Working meeting
Remote participation availability (only for physical Plenaries): 
Yes
Avoid conflict with the following group (1): 
Avoid conflict with the following group (2): 
Avoid conflict with the following group (3): 
Meeting presenters: 
Anne Cambon-Thomsen; Brian Pickering, Alexander Bernier, Claudia Bauzer Medeiros, Dara Hallinan, Francis Crawley