This Tuesday, November 3, EUCANCan hosted the webinar “International Data Sharing of Cancer Genomic Data,” moderated by Prof Lincoln Stein from the Ontario Institute for Cancer Research, scientific Coordinator of EUCANCan’s Canadian branch.
Close to 50 policymakers and members of the scientific community joined the webinar.
Below is a recap of the event, which had the following agenda:
- Welcome and introductions, Prof Lincoln Stein
- Brief introduction to EUCANCan, Prof Lincoln Stein
- Data integration challenges & solutions, Juergen Eils
- Data sharing from a European perspective, Dr Fruzsina Molnár-Gábor
- Data sharing from a Canadian perspective, Prof Bartha Maria Knoppers
- Discussion, facilitated by Prof Lincoln Stein
Prof Lincoln Stein: Brief introduction to EUCANCan
Prof Stein began by giving a brief introduction to the project.
He explained that EUCANCan is designed to address a pressing problem in precision medicine and precision oncology: lack of access to large enough data sets.
“Because of the vast heterogeneity in cancer genomics and in the behavior of tumors, one needs a very large sample size to identify all the genomic variants and the biological pathways that contribute to the various courses of disease in individual patients.”
Prof Stein continued: “To predict what course of treatment is best for each patient, we need to integrate more data than any single clinical case trial or health series can provide. We need to take large amounts of data from multiple research institutions in multiple regions and combine and mine that to discover predictive patterns.”
Today, strict data protection laws and differences in exchange and privacy standards between countries and regions hamper data sharing across institutions and regions. As a result, many researchers express frustration over not being able to work as effectively as they could have done if they had access to more data.
EUCANCan is designed as a testbed to test out different technical and sociological solutions to this problem. During the course of the 4-year-project (Jan 1, 2019 – Jan 1, 2023), EUCANCan will build a pilot-platform that enables transfers of cancer genomic data between Europe and Canada.
EUCANCan’s objectives are to:
- Harmonize protocols for the identification and interpretation of germline and somatic variation profiles within cancer genomes
- Generate strategies for the flow, management, storage, and distribution of data within and across EUCANCan nodes
- Define community standards for data elements, types, and formats
- Develop an open and accessible data portal for the searching and download of EUCANCan data
- Define and appropriate ethical and legal frame to ensure the secure sharing of protected individual genomic and phenotypic data across countries.
The project is funded by the European Commission through the Horizon 2020 programme on the European side and the Canadian Institute of Health Research (CIHR) on the Canadian side.
Juergen Eils: Data integration challenges & solutions – the EUCANCan approach
Prof Stein’s introduction was followed by a presentation by Juergen Eils from Charité and Heidelberg University Hospital. Eils leads EUCANCan’s WP 5 – interoperability.
One topic Eils discussed was the active role EUCANCan plays in several external working groups. The consortium has co-founded a new task force, Clinical Phenotypic Data Capture, under the umbrella of Global Alliance for Genomics & Health (GA4GH).
The task force will support the clinical adoption of genomics through establishing standard ontologies and information models to describe the clinical phenotype for use in genomic medicine and research, including the capture and exchange of information between electronic clinical systems and research.
EUCANCan also works closely with the five other projects funded under the same Horizon 2020 call, making up the EUCAN cluster.
Fruzsina Molnár-Gábor: Health data sharing from a European perspective
The webinar’s third presenter was Dr Fruzsina Molnár-Gábor from Heidelberg Academy of Sciences and Humanities, who is co-leading the development of EUCANCan’s legal framework for international data sharing. She discussed health data sharing from a European perspective.
Dr Molnár-Gábor began with an introduction to current rules for health data sharing in the European Union. She pointed out that while the European General Data Protection Regulation (GDPR), implemented in 2018, has helped advance a common standard for data sharing within the EU, the system is far from comprehensive. The limitations are largely caused by the fact that the GDPR’s rules are not interpreted in a common manner. This, in turn, results from the GDPR including an unusually high amount of undefined legal terms as well as room for implementation by the member states.
“For the application and implementation of GDPR rules, it should be realized that the patients’ interests that are attached to this (EUCANCan’s) research are not (only) contradictory to those interests that are followed by the research itself.”
Prof Bartha Maria Knoppers: Health data sharing from a Canadian perspective
Last out before the discussion session was Prof Bartha Maria Knoppers, talking about health data sharing from a Canadian perspective. In EUCANCan, Prof Knoppers is responsible for conducting an ethic-legal analysis of data sharing and protection issues related to Canada’s participation in the project.
Prof Knoppers began by providing a general background on the Canadian legal framework for data sharing. In Canada, there are federal data privacy laws that apply to the commercial sector (including biomedical research institutions that receive funding from federal institutions) and provincial laws that apply to the health sector.
Prof Knoppers gave her take on how the Canadian model can serve as a form of blueprint for what is possible to achieve in EUCANCan. She compared data sharing regulations for how data can be transferred between Canadian provinces with the principles for data transfers between the EU and third countries.
Emphasizing the importance of data governance practices, Prof Knoppers listed three key strategies that Canadians participating in international research consortium can adopt:
- Implement data de-identification processes and data governance strategies to ensure data is protected and can be circulated freely.
- Adopt a data governance strategy and consortium-wide policies to ensure consistent data sharing across the consortium.
- Collaborate with privacy regulators and other government bodies to guide the application of privacy laws to the specific context of the health sector.
Conclusion
The presentations by the EUCANCan team took up the first half of the two-hour-long webinar and was followed by an hour-long open discussion.
The EUCANCan team sends out a large thanks to everyone who showed their interest in the webinar and/or took part in the discussion. We look forward to the 2nd event in our health policy event series, this is scheduled to take place during the mid of next year.