ELSI issues and ELIXIR ethics policy - breakout session @ ELIXIR all-hands meeting 2016

A major task of ELIXIR is to provide and facilitate the use of sensitive data for research. The ELIXIR Ethics Policy currently under development will describe and simplify this process from the infrastructure and data provider side by highlighting major areas of focus and clearly outlining a mechanism for monitoring compliance. By presenting the rationale and background of the policy we hope to open a dialogue on the possible practical and technical implications of the policy and point to solutions. The EXCELERATE WP8 rare disease and 9 human data as well as the human data implementation study will serve as use cases to examine possible challenges that may arise in the context of activities within ELIXIR.

In this session, we want to:

• identify specific questions arising from EXCELERATE activities - in the context of the ELIXIR Ethics policy, these can serve as "use cases" also to see what issues can arise within ELIXIR that go beyond existing activities at the Nodes
• present the rationale for the draft Ethics Policy and get feedback
• discuss possible technical implications or aspects of the draft policy
• identify areas where the policy can support activities around sensitive data

Target audience

Technical personnel from EXCELERATE work packages 8 and 9, participants in the human data implementation study, personnel across all ELIXIR Nodes familiar with or responsible for regulatory issues or technical aspects of sensitive data provision.