Governance of data access

Whilst it is widely accepted that data should be shared for secondary research uses where these can be balanced with the maintenance of participant privacy, there has thus far been little oversight or coordination of policies, resources and infrastructure across research funders to ensure data access is efficient, effective and proportionate. Funders have different policies and processes for maximizing the value from the datasets generated by their researchers, and EAGDA wished to identify whether and how improvements to governance for data access and the dissemination of good practice across the funders could enhance this value. This is a report of the Expert Advisory Group on Data Access (EAGDA). EAGDA was established by the Medical Research Council, Economic and Social Research Council, Cancer Research UK and the Wellcome Trust in 2012 to provide strategic advice on emerging scientific, legal and ethical issues in relation to data access for human cohort and longitudinal studies across genomics, epidemiology and the social sciences.