Comments welcome: Access and intellectual property
The UK Biobank Ethics and Governance Council has prepared a list of questions that it recommends UK Biobank considers when further developing its Access and Intellectual Property (IP) policy and procedures. The Council welcomes views on any of these questions in particular, or on issues of Access and IP in general. The Council will consider responses at future meetings and would expect that these would inform its discussions with, and recommendations to, UK Biobank. If you so wish, the Council will also pass your comments directly to UK Biobank.
Please send your comments to EGCinfo@wellcome.ac.uk indicating if you are happy for these to be shared with UK Biobank and/or made public.
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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.
If you would like a hard copy of the EGC Annual Review 2009 please contact the Council Secretary, Adrienne, at EGCinfo@wellcome.ac.uk.
| 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 | Not yet available |
| EGC meeting 24 | 27/09/10 | Not yet available |
| EGC meeting 25 | 06/12/10 | Not yet available |
| EGC meeting 26 | 14/03/11 | Not yet available |
| EGC meeting 27 | 07/06/11 | Not yet available |