Statements

null Biobank legislation reform

Summary of key points:

  • Well-constructed biobank databases are part of the immaterial national infrastructure of the future. Utilizing systematically collected health data for national benefit requires a long-term strategy and clear legislation.
  • CSC supports the reform of biobank legislation as clear and up-to-date legislation plays a key role in enabling efficient biobank activities and wider health data re-use. It is also important to clarify the roles and responsibilities of different actors.
  • The data created from biobank samples must include thorough metadata that should indicate for example, where and what data can be found (findability, availability), who can decide on the transfer of data to the user (access control), how to ensure interoperability, and under what conditions the data can be accessed for analysis purposes (re-usability).