IG Health Data - RDA 12th Plenary Meeting

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Meeting title
Genomic Data and Privacy

Collaborative session notes
(link to be added)

Short introduction describing the activities and the scope of the group

The Health Data Interest Group (HDIG) was officially instituted in 2016 following successful BoF Sessions during the 6th RDA Plenary Meeting in Paris and the 7th RDA Plenary Meeting in Tokyo. It is now a mature RDA component, actively involved in the 8th RDA Plenary Meeting in Denver with a session titled “Health Data Privacy & Security issues”, at P9 in Barcelona with a session focused on “Meaningful health data for research and for industry” at P10 in Montreal with a session on “Health data mapping and diverging trends in health data protection” and at P11 in Berlin on “First results on RDA Adoption and Training Guide for Reproducible Data Service Workflows and diverging trends in Health data protection”. 

All sessions were attended by several researchers and professionals from diverse backgrounds, who discussed a number of relevant issues as the Health Data IG is the only RDA group focusing on the intricacies of Health Data, especially as it relates to privacy and security issues in Healthcare but not only. 

As a result, two working groups (WG) are spreading from the HDIG, one on “Blockchain Applications in Health”, which is completing the TAB review process and already had an official meeting at P11 in Berlin, and another one on “Reproducible Health Data Services” just starting its recognizing process.

The HDIG is now looking forward to the next plenary assembly at the RDA 12 Plenary in Gabarone, Botswana 2018 to address a new topic which is gaining rising interest for scientific research communities especially after the entry into force in May 2018 of the EU General Data Protection Regulation (GDPR): genomic data in the light of privacy rules.

The extremely sensitive nature of genomic data mandates the use of controlled data sharing policies to ensure that the privacy of individual subjects is not compromised. At the same time, it is clear that flexible data sharing and analytics will play a critical role in fueling the next era of large-scale genomic association studies and scientific discoveries.

To effectively address privacy concerns, it is crucial that state-of-the-art cryptographic security and privacy tools (such as Secure Multi-Party Computation, Homomorphic Encryption, and Differential Privacy) be appropriately adapted and
deployed for large-scale genomic data analysis and sharing.

In particular, the issue will be discussed in relation to the ongoing work on a first draft report on the GDPR, within as far as it concerns health data, in comparison to the currant developments in other geographical areas.

Additional links

• Group page: https://rd-alliance.org/groups/health-data.html
• Case statement: https://www.rd-alliance.org/group/health-data/case-statement/health-data...
• P11 HDIG Session Presentations: https://rd-alliance.org/hdig-p11-berlin 
• Draft Report on Diverging Trends in Health Data Protection (open to contribution): https://docs.google.com/document/d/130sL5lRRZlCjd-u-pTV7rJs5pSanc9WYemyp...

Meeting objectives

This meeting will focus on the needs of sharing and interoperability of genomic data in light of the GDPR. While the GDPR was implemented in one region, it has far implications across the globe.
1) Present and Discuss issues related to privacy preserving technologies and applicable regulatory framework with regard to the genomic data domain
2) To present updates on a first draft report on the GDPR, within as far as it concerns health data, in comparison to the currant developments in other geographical areas
3) Discuss international concerns and needs regarding GDPR outside the EU.

Meeting agenda

*Brief introduction to the group 
*Guest speakers on Genomic data and Privacy
*Presentation and Discussion on genomic data, applicable data protection rules and privacy preserving technologies
*HDIG task groups activities: diverging trends in Health data protection and WGs stemmed from the HDIG
**Presentation of the first/main results
**Current standing
**Next steps


For this open session, we invite Policymakers for Healthcare; Clinicians wanting to use data technology to improve their practice; Biomedical researchers using data-driven analytical techniques in their research life-cycle; Healthcare Data Scientists dealing with data mining, machine learning, physiological modelling and image processing technologies and the data these produce; Health bioinformatics legal experts; Healthcare and Health Maintenance Organisation administrators; Pharmaceutical industry researchers and manufacturers; Medical equipment researchers and manufacturers, in silico modelling, testing and clinical trial experts; and, participants form other related WG/IG.

Group chair serving as contact person
Yannis Ioannidis, Anthony Chang, Edwin Morley-Fletcher, Leslie McIntosh Borrelli

Type of meeting
Working meeting