Expert Advisory Group on Data Access
The Expert Advisory Group on Data Access (EAGDA) was established by the Wellcome Trust, Cancer Research UK, the Economic and Social Research Council, and the Medical Research Council to provide strategic advice on the emerging scientific, legal and ethical issues associated with data access for human genetics research and cohort studies.
The EAGDA will perform three crucial roles. It will serve to provide expert advice to the partner funders on key strategic issues in relation to data access, and it will support current and future study Data Access Committees (DACs) across the fields of genetics, epidemiology and the social sciences -identifying best practice and encouraging consistency in decision making. The Group will act at a strategic level: it will not make decisions on individual access applications, or monitor or scrutinise the operations of individual DACs. Rather, it will act as a recognised UK authority on the governance of data access to which both funders and study DACs can refer new and problematic issues that arise for timely and authoritative advice. It will also serve to enhance the UK’s input into international policy discussions on data access.
The EAGDA is chaired by Professor Martin Bobrow and currently has 14 members, with expertise spanning genetics, epidemiology, social sciences, statistics, IT, data management and security, law, and ethics:
- Professor James Banks
- Professor Paul Burton
- Professor George Davey Smith
- Professor Rosalind Eeles
- Dr Paul Flicek
- Dr Mark Guyer
- Dr Tim Hubbard
- Professor Bartha Knoppers
- Professor Mark McCarthy
- Professor Andrew Morris
- Baroness Onora O'Neill
- Professor Nigel Shadbolt
- Professor Chris Skinner
- Ms Melanie Wright
Biographies of current EAGDA chair and members
Minutes
This page is the public portal for EAGDA and will be updated with minutes of EAGDA's meetings, reports and other publications relevant to EAGDA's work. EAGDA and the group's funders are keen to hear from communities at any point about emerging issues relating to data access.
Contact
Natalie Banner
Policy Officer and EAGDA Secretariat
Wellcome Trust
E
n.banner@wellcome.ac.uk