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History of UK Biobank, Electronic Medical Records in the NHS, and the Proposal for Data-Sharing Without Consent

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History of UK Biobank, Electronic Medical Records in the NHS, and the Proposal for Data-Sharing Without Consent Bioscience for Life? Appendix A The history of UK Biobank, electronic medical records in the NHS, and the proposal for data-sharing without consent January 2009 1 Bioscience for Life? Appendix A Table of contents 1. Introduction................................................................... 12 2. Summary........................................................................ 12 3. What is UK Biobank?...................................................... 13 4. Concerns about UK Biobank and genetic ‘prediction and prevention’ of disease........................................................ 14 5. Timeline......................................................................... 15 1995................................................................................... 15 The Foresight report................................................................................ 15 1997................................................................................... 16 The biotech economy......................................................... 16 The European directive and gene patenting........................17 A new NHS........................................................................ 17 1998.................................................................................. 17 Claims that genetics will transform medicine.................... 17 The Government partners with the Wellcome Trust........... 18 The McKinsey Report......................................................... 18 An increasing role for the Wellcome Trust......................... 19 Localised electronic medical records in the NHS................ 20 High Technology Businesses and the Competitiveness White Paper............................................................................... .20 1999.................................................................................. 21 A national genetic database for Britain? George Poste’s proposal........................................................................... 21 2 Bioscience for Life? Appendix A The development of a biobank proposal by the Wellcome Trust................................................................................ 23 A new advisory body........................................................ 23 Poste's proposal is adopted by the House of Lords Science and Technology Committee...............................................23 Biotechnology clusters..................................................... 23 The Source Informatics case............................................ 25 The Government's Genome Valley Report.........................25 2000................................................................................. 25 The Human Genetics Commission (HGC).......................... 25 Development of UK Biobank............................................. 26 Blair and the completion of the first draft of the Human Genome............................................................................ 26 The NHS Plan.................................................................... 27 Exploiting the genome...................................................... 27 The House of Lords Science and Technology Committee pursue Poste's proposal....................................................28 Sir Richard Sykes’ vision for the NHS................................ 28 The Medical Research Council........................................... 29 Evidence to the House of Lords Science and Technology Committee........................................................................ 29 Criticisms of UK Biobank begin......................................... 30 Healthcare 2020............................................................... 30 2001.................................................................................. 32 A national biobank in Estonia............................................ 32 Harnessing genomics........................................................ 32 The Human Genome and gene patenting........................... 32 3 Bioscience for Life? Appendix A UK Biobank consultation with healthcare professionals..................................................................... 32 The House of Lords Science and Technology Committee publishes its report........................................................... 33 Government announces a new policy Green Paper on genetics in the NHS........................................ ...................34 Regulating the processing of patient information without consent............................................................................. 34 Scientific criticisms of UK Biobank.................................... 34 Government response to the House of Lords Committee.........................................................................35 Shifting the boundary between the individual and the patient...............................................................................35 Commercial gene tests sales begin.................................... 36 2002.................................................................................. 36 The genetics revolution underway?................................... 36 Streamlining consent?...................................................... 37 Blair’s sofa meeting: approving the NHS National Programme for IT................................................................................ 37 UK Biobank’s scientific protocol........................................ 37 Electronic medical records move ahead............................ 38 Concerns about commercial companies and UK Biobank............................................................................ 38 Delivering the NHS Plan................................................... 38 The Wanless report.......................................................... 38 UK Biobank announced..................................................... 39 Blair’s science speech....................................................... 39 Regulating patient information......................................... 39 4 Bioscience for Life? Appendix A The HGC’s Inside Information report................................ 39 The NHS National Programme for Information Technology (NpfIT)............................................................................. 40 UK Biobank and gene-environment interactions............... 40 Sainsbury’s speech........................................................... 40 UK Biobank raised in parliament....................................... 41 Government and Wellcome Trust jointly fund more science............................................................................. 41 Investing for Innovation.................................................. 41 UK Biobank impacts on other research funding................ 41 The Nobel prize for medicine............................................ 41 NHS IT, NHS numbers for babies, and the secondary use of data for research.............................................................. 41 2003.................................................................................. 42 The Bioscience Innovation and Growth Team................................................................................ 42 Ownership and access to medical records........................ 43 The Royal Society’s People’s Science Summit on genetic testing............................................................................. 43 Genetics and health: Visions of the future........................ 43 The HGC’s Genes Direct report......................................... 44 The DNA double helix anniversary.................................... 44 NPfIT’s output specification............................................. 44 UK Biobank – a politically driven project?......................... 44 Publication of the Genetics White Paper............................45 The Academy of Medical Sciences: ‘Strengthening clinical research’........................................................................... 46 5 Bioscience for Life? Appendix A The NHS Code of Practice on Confidentiality.................................................................. 47 More criticism of UK Biobank............................................ 47 NHS IT contracts awarded................................................ 47 2004.................................................................................. 47 UK Biobank’s Board appointed.......................................... 47 The second Wanless report............................................... 48 Pattison retires................................................................. 48 Increased budget for medical research............................. 48 New UK Biobank appointment........................................... 48 Implementing the BIGT report.......................................... 49 The NHS improvement plan and the data ‘Spine’............... 49 The Science and Innovation Investment Framework......... 49 New UK Biobank appointment........................................... 50 Revised draft of the Human Genome published................. 50 Systems biology: DNA plus monitoring..............................50 The Healthcare Industries Task Force............................... 50 The ‘Choosing Health’ White Paper................................... 51 Clinical leads for NPfIT..................................................... 51 More gene test marketing................................................. 51 The Estonian Genome Project’s funding collapses............. 52 2005.................................................................................
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