EUCAN-ELSI Collaboratory Hackathon Meeting on 30 August 2019 in London, UK

On 30 August 2019, European and Canadian (EUCAN) policymakers of various EU projects funded under the EUCAN Horizon 2020 call met at the Wellcome Trust Gibbs Building in London to discuss areas of commonality as well as to identify potential synergies and opportunities to share resources.

The meeting was co-chaired by the EUCANCan consortium members Prof Bartha M. Knoppers and Mark Phillips from McGill University. The hackathon brought together representatives of work packages related to Ethical, Legal and Social Implications (ELSI) of data sharing in genomics including EUCANCan, euCanSHare, EUCAN-Connect, iReceptor Plus and CINECA.

The researchers had the opportunity to learn about each other’s activities, raise questions, voice concerns and exchange information since there are numerous areas of common ground including aspects of legal and ethical frameworks that each project has to abide by.

The importance of cooperation and transparency among the projects was highlighted to ensure that duplication of work can be avoided. Also, common challenges were discussed, such as the lack of agreement on the interpretations of laws and guidelines within the community, or the need for all projects to be mindful of potential changes from guidelines into laws.

Further topics of common interest were discussed, such as:

  • Ideal research contexts versus real-world practical implementations
  • The diverse cultural contexts in projects and countries and their impact on the success of governance and legal frameworks
  • The issues of pseudonymisation and effects on reporting results
  • Defining specific public engagement activities and how knowledge of those activities could be shared
  • Whether there were ways of creating standard agreements to enable collaborative work as ways to answer some of these common concerns

Upcoming, regular EUCAN-ELSI Collaboratory meetings were planned in order to continue the conversation and to understand and solve the current and potential issues in the projects as they arise.