The EUCANCan communications team recently caught up with Alexander Bernier, who besides supporting the development of policy recommendations for international sharing of genomics data in the context of EUCANCan’s Work Package 6 (WP6) is also working toward his PhD in the same field at the University of Toronto.
In 2018, Alexander Bernier was working as an editor for a health law journal when he saw a job post for a Research Assistant role at the Centre of Genomics and Policy (CGP) of the Faculty of Medicine at McGill University in Canada, directed by Prof. Bartha Knoppers, who co-leads EUCANCan’s WP6 (Ethico-legal framework for clinical oncology data) together with Dr. iur. Fruzsina Molnár-Gábor of the Heidelberg Academy of Science in Germany.
“This was around the time when the initial social reaction to privacy and big data platform was an evolving topic and I followed the discussions with great interest. I was glad to learn that OGP needed my assistance with several data governance projects, including EUCANCan,” says Alexander Bernier about what motivated him to apply for the position.
Cross-project and cross-discipline collaboration
One rationale of EUCANCan is to build a theoretical and technical framework to enable the exchange of biomedical data between biomedical institutions. EUCANCan is part of the EUCAN cluster, consisting of six projects that received funding under the same Horizon 2020 call.
“The EUCAN ELSI Collaboratory is excellent. It is almost like a laboratory, where many institutions meet to experiment with different approaches, learn from each other and come together on joint policy recommendations,” says Alexander Bernier, adding that:
“Being a part of this group has given me a wonderful opportunity to see all the different pieces of the puzzle coming together. When you are at an early stage of your career or work in a narrowly scoped discipline, it can be difficult to understand how different organizations have different roles intersect. Gaining this cross-discipline experience has been truly valuable.”
Now an Associate at CGP, Alexander Bernier collaborates with colleagues in both EUCANCan’s WP6 and in the EUCAN ELSI Collaboratory, a working group consisting of ethical and legal experts from the EUCAN consortia.
“My role is to collaborate with different partners in developing a policy framework for how organizations can best go about sharing biomedical data between them. We are now working on documenting our proposal and how it can be scaled across a large number of different settings,” explains Alexander Bernier.
Translating research into policy
Next to his job at CGP, Alexander Bernier is working towards his PhD at the University of Toronto, looking at how platforms for data exchange and data protection and governance laws are structured through a law and economics lens.
Because of the veracity and volume of data in our technology-driven world, data privacy is a pressing issue.
“What actually happens under the hood when we process data is a very technical question, so we have a lot of problems with translating the social expectations we have into technical practices. This has given policymakers a lot of grief and makes it difficult for people who work in the tech space to understand what society wants. This gap in understanding is an interesting set of issues to work on,” says Alexander Bernier.
He is motivated to continue working at the intersection of law, economics, and medicine in the future. Arguing that there is an imbalance between the amount of research that has been conducted on data governance in different sectors and the uptake of data governance policies in practical contexts, Alexander Bernier concludes that:
“There is a lot of consensus-building to do when it comes to understanding how legal obligations apply, the underlying science, and the technological platforms – it is highly complex. Moving forward, I want to contribute toward making some of these topics, which have shown great promise for decades, start to materialize.”