Sensitive data for Open Science - RDA 11th Plenary BoF meeting

BoF Meeting title:

Sensitive Data for Open Science

Remote Access Instructions

Collaborative session notes:

https://docs.google.com/document/d/1WIKMDWv8I6HEozSK77X0CtqhpFOtB5pjEPa7...

Short introduction describing the scope of the group and if any previous activities

Sensitive Data is personal data about a data subject, such as racial or ethnic origin, political opinions, et.; but in particular, it is data about physical or mental health, including genetic records. Sensitive Data is subject to strict data protection in EU law; thus, it is in general forbidden to share it, unless an explicit and unambiguous consent by the data subject is provided, authorizing the use of this data for a certain purpose over a certain period of time. On the other hand, sensitive data plays an important part in research, and its importance is still growing, because it allows investigations with impact on human health and wellbeing. Therefore, facilities and processes for managing sensitive data should have an important place in research and especially in the cloud data infrastructures that are being built to foster research in Europe. 

The EUDAT initiative has established a “Sensitive Data Working Group (WG)” to investigate and discuss different requirements of research communities related to sensitive data, like, for example, the necessary levels of protection, different types of consent, different anonymization procedures, use of isolated, protected work spaces, and levels of identity assurance for user authentication. The Sensitive Data WG is taking inventory of technologies that could help address data protection requirements of research infrastructures and that are within the scope of EUDAT and other infrastructures offering data management services to research communities. Within the context of organizing this meeting at RDA, we want to evaluate how these solutions can enable the inclusion of sensitive data in the general RDA Data Fabric of advanced research processes and how RDA Interest Groups can contribute to this extension of data processes. Our vision is to have interoperable infrastructures that allow access and analysis of sensitive data together with open data, like, for example, the processing of health data linked together with climate and environmental data. We believe that it is possible, given the right technical support and suitable policies, to open Sensitive Data to Open Science.

Additional links to informative material related to the group

• Group web site: https://eudat.eu/a-eudat-working-group-on-sensitive-data-management 
• Case statement: The use of the EUDAT repository to store clinical trials in a secure and compliant way. Data Pilot: https://www.eudat.eu/the-use-of-the-eudat-repository-to-store-clinical-t...
• Working document: “How can e-infrastructures deal with the sensitive data challenge? Results of the EUDAT Sensitive Data Group workshop.” 2017, DOI http://doi.org/10.23728/b2share.3d1dfb9b889c4022ae7b308df009fcc9

Meeting objectives

1) Presentation of results of the inventory and evaluation of technologies to the RDA community.
2) Meet and foster connections among professionals interested in exploring techniques to use sensitive data as part of open data sharing across technologies, disciplines and countries.
3) Investigate the establishment of a Sensitive Data related RDA WG including the finalization and harmonization with RDA of the creation of a Sensitive Data Memorandum.
4) Advance the work of the EUDAT Sensitive Data Group by embedding it into RDA communities for developing and adopting infrastructures for data-sharing and data-driven research with a focus on sensitive data on a global level.
5) Increase the impact of our efforts by proposing a common memorandum of sensitive data usage to take-up the sensitive data challenge for European data infrastructures

Meeting agenda

1. Welcome, self-introduction of the audience (30 sec each, 5 min)
2. Introduction: Sensitive Data & Research infrastructures, eInfrastructures – Daan (10m)
3. Scientific use cases and the goal of the meeting – Wolfgang (10m)
4. EUDAT Sensitive Data WG, EOSC-hub sensitive data task and Tryggve Nordic sensitive data Clouds - Francesca, Antti (15m)
5. Discussions topics:      
           a. Is open science compatible with sensitive data?
           b. FAIR sensitive data?
           c. How does the US situation compare with Europe?
           d. What role can RDA take?
                ◦ Networking & discussion platform
                ◦ Collaborate on best practices, harmonise approaches, standardisation
                ◦ Liaise with other ongoing RDA work
                ◦ Global impact of common recommendations
6. What should be the outcome of this session:
                ◦ Is there room and interest for a Sensitive Data IG or WG
                ◦ If a WG, what should be the goals/products?

Target audience:

This meeting is aimed at those working with heterogenous data sources including sensitive data, in data intensive science that employ ‘data bridges’ for data sharing across technologies, disciplines and countries, but also for data service providers and service developers, who are confronted with having to consider the regulations for sensitive data; especially researchers that need to access or link to health or genetic data and who are interested in the requirements of data and privacy protection in general. In addition, RDA members of the groups about ethical aspects, privacy protection, trust generation and identity management should attend to discuss joint approaches and projects.
The audience should know about the regulatory requirements (EU General Data Protection Regulation, national data protection laws), and Best Practices and data access rules for sensitive data demanded by different data service providers.

Group chair serving as contact person: Daan Broeder, Wolfgang Kuchinke

Type of meeting: Working meeting

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