Commissioned reports
The Council has commissioned a number of reports on matters it considers pertinent to its remit. Links to the full reports can be found below, prefaced with an explanation as to why the studies were commissioned. The Council welcomes your thoughts on these reports. Comments should be sent to EGCinfo@wellcome.ac.uk
Public attitudes to biobanks and related ethics and governance issues. Author: Joanne Sumner (2 January 2007)
Access to the UK Biobank Resource: Concepts of the Public Interest and the Public Good. Authors: Benjamin Capps, Alastair V. Campbell and Ruud ter Meulen (22 April 2008)
Public attitudes to third party access and benefit sharing: their application to UK Biobank (Final Report). Authors: Andrew Webster, Nik Brown, Conor Douglas, Graham Lewis, Jane Kaye, Richard Tutton, Nick Williams (June 2008).
Access to the UK Biobank Resource: Advising on the public interest and the public good (Version 2, 17 February 2009). This is a living document developed by the Council in response to the commissioned report on the concepts of the public interest and the public good. This document will evolve as the EGC develops more knowledge and experience of what these terms mean in the context of UK Biobank.
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Council meeting reports and related
The agenda and report of any given meeting is approved at the subsequent meeting. The documents will be made available shortly after the approval meeting date.
Marking the publication of UK Biobank's access procedures in December 2011, the Council has released a statement on access. The statement aims to (1) re-state the nature of the EGC's monitoring and advisory role in relation to the access phase and (2) indicate the issues that the EGC regards as important to keep under review as UK Biobank gains experience of the access process in operation.
| Meeting title | Date | Related documents |
|---|---|---|
| EGC meeting 1 (including induction) | 29/11/04 30/11/04 | EGC1 agenda and report (pdf) |
| EGC meeting 2 | 14/02/05 | EGC2 agenda and report (pdf) |
| EGC meeting 3 | 04/04/05 | EGC3 agenda and report (pdf) |
| EGC meeting 4 | 06/06/05 | EGC4 agenda and report (pdf) |
| EGC meeting 5 | 19/09/05 | EGC5 agenda and report (pdf) |
| EGC public presentation and discussion (London) | 28/11/05 | Public meeting report (pdf) |
| EGC meeting 6 | 29/11/05 | EGC6 agenda and report (pdf) |
| EGC annual review | 2004 - 2005 | EGC annual review 2004 - 2005 (pdf) |
| EGC meeting 7 | 13/03/06 | EGC7 agenda and report (pdf) |
| EGC meeting 8 | 12/06/06 | EGC8 agenda and report (pdf) |
| EGC meeting 9 | 25/09/06 | EGC9 agenda and report (pdf) |
| EGC annual review | 2006 | EGC annual review 2006 (pdf) |
| EGC meeting 10 | 16/01/07 | EGC10 agenda and report (pdf), EGC10 summary of decisions (pdf) |
| EGC meeting 11 | 12/03/07 | EGC11 agenda and report (pdf), EGC11 summary of decisions (pdf) |
| EGC public presentation and discussion (Manchester) | 11/06/07 | June 2007 public meeting report |
| EGC meeting 12 | 12/06/07 | EGC12 agenda and report (pdf), EGC12 summary of decisions (pdf) |
| EGC meeting 13 | 01/11/07 | EGC13 agenda and report (pdf), EGC13 summary of decisions (pdf) |
| EGC public presentation and discussion (Oxford) | 03/12/07 | December 2007 public meeting report |
| EGC annual review | 2007 | EGC annual review 2007 (pdf) |
| EGC meeting 14 | 17/03/08 | EGC14 agenda and report (pdf), EGC14 summary of decisions (pdf) |
| EGC meeting 15 | 09/06/08 | EGC15 agenda and report (pdf), EGC15 summary of decisions (pdf) |
| EGC public presentation and discussion (Edinburgh) | 01/07/08 | July 2008 public meeting report |
| EGC meeting 16 | 15/09/08 | EGC16 agenda and report (pdf), EGC16 summary of decisions (pdf) |
| Access and intellectual property | 29/10/08 | Questions to consider during the development of access and intellectual property procedures (pdf) |
| EGC meeting 17 | 08/12/08 | EGC17 agenda and report (pdf), EGC17 summary of decisions (pdf) |
| EGC annual review | 2008 | EGC annual review 2008 (pdf) |
| Outcomes of the Funders' review of the EGC | 11/2008 - 01/2009 | Letter from the Funders to the EGC (pdf); EGC workplan 2009 - 2010 (pdf) |
| EGC public presentation and discussion (Cardiff) | 12/02/09 | February 2009 public meeting report |
| EGC meeting 18 | 16/03/09 | EGC18 agenda and report (pdf), EGC18 summary of decisions (pdf) |
| EGC meeting 19 | 08/06/09 | EGC19 agenda and report (pdf), EGC19 summary of decisions (pdf) |
| EGC meeting 20 | 07/09/09 | EGC20 agenda and report (pdf), EGC20 summary of decisions (pdf) |
| EGC meeting 21 | 07/12/09 | EGC21 agenda and report (pdf), EGC21 summary of decisions (pdf) |
| EGC workshop 'Involving publics in biobank research and governance' | 08/12/09 | EGC workshop report (pdf) |
| EGC annual review | 2009 | EGC annual review 2009 (pdf) |
| EGC meeting 22 | 22/03/10 | EGC22 agenda and report (pdf), EGC22 summary of decisions (pdf) |
| EGC public presentation and discussion (Sheffield) | 22/03/10 | March 2010 public meeting report |
| EGC meeting 23 | 07/06/10 | EGC23 agenda and report (pdf) |
| Outcome of the Funders' review of the EGC | 07/2010 | Report of the EGC review 2010 (pdf) |
| EGC meeting 24 | 27/09/10 | EGC24 agenda and report (pdf) |
| EGC meeting 25 | 06/12/10 | EGC25 agenda and report (pdf) |
| EGC annual review | 2010 | EGC annual review 2010 (pdf) |
| EGC meeting 26 | 14/03/11 | EGC26 agenda and report (pdf) |
| EGC meeting 27 | 06/06/11 | EGC27 agenda and report (pdf) |
| EGC meeting 28 | 26/09/11 | EGC28 agenda and report (pdf) |
| EGC meeting 29 | 12/12/11 | Not yet available |
| EGC statement on access | 18/01/12 | EGC statement on access (pdf) |
| EGC meeting 30 | 05/03/12 | Not yet available |
| EGC meeting 31 | 21/05/12 | Not yet available |
| EGC meeting 32 | 03/09/12 | Not yet available |