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The Government's response 'largely restates past achievements'

21 December 2009
By Dr Rob Elles, Dr Frances Flinter and Dr Christine Patch
Dr Christine Patch is a Biomedical Research Centre Fellow at Guy’s and St Thomas’ NHS Foundation Trust in London, UK, and the Chair of the British Society for Human Genetics, Dr Frances Flinter is a Consultant Clinical Geneticist and Caldicott Guardian at Guy's and St Thomas' NHS Foundation Trust, and Rob Elles is Director of Molecular Genetics at the Manchester Academic Health Science Centre, UK  
Appeared in BioNews 539
The report from the UK House of Lords' Science and Technology Committee Inquiry into Genomic Medicine argued that rapid developments in genetic science require a new strategy for its delivery within health services and research. The Government's response to the Report largely restates past achievements and seems to suggest that minor modifications of current processes will allow delivery of the benefits of advances in knowledge.

The Report was thorough and time-consuming, bringing together many experts from across genomic medicine. It is encouraging that the Government, in its response, has committed to establishing a Human Genomics Strategy Group, which will work across departments. The British Society for Human Genetics (BSHG) will strongly support this initiative.

Establishing a new diagnostics committee through the National Institute for Health and Clinical Excellence (NICE) is also potentially useful. A significant thread running through the Report was the difficulty of implementing new diagnostics in a timely fashion. The Government's response to recommendations regarding commissioning of genetic tests, however, was disappointing. Current locally-devolved models of commissioning and delivery are already failing to deliver equitable access to genetic tests for rarer disorders. As molecular tests become useful across medical specialties, this gap can only increase. Expecting existing models and World Class Commissioning to deliver improvements without any clear steer is a missed opportunity. We hope the cross-departmental Human Genomics Strategy Group explores this as a priority.

The BSHG will collaborate in efforts to bring the expertise, experience and infrastructure of genetic and molecular pathology laboratories closer together to develop sustainable delivery models for the future. We also welcome the Government's commitment to establish an Institute of Biomedical Informatics. We will help develop the concept of an organisation to enable the NHS to develop bioinformatics capability within its current staff. This would include developing the best ways to access bioinformatics expertise and the necessary infrastructure to process, analyse and integrate medical data from new analytical technologies with the most appropriate and secure mechanisms to store and access the data.

The BSHG also wants to work with the Research Capability Programme of NHS Connecting for Health (CfH) - the Government's national programme for IT - to help develop robust consent procedures and appropriate research access to data sets generated by clinical and laboratory genetic services. We are already represented on the Genetics IT Development Group in CfH and will continue to work with the group to develop data standards for genetics IT systems. However, as before, the Government's response to the Report does not seem to recognise the urgent need for developments in this area or the magnitude of the task.

The BSHG is working within other groups to present a commentary and response to the original Report and the Government's response, which deserve more detailed and considered thought. While accepting that the current economic climate means increased investment is unlikely, there is a need for strategic direction to ensure effective developments are adopted and delivered equitably.

BioNews noticed in the Government's response that there will be no new White Paper on genomic medicine in the near future. This is because: 'Many of the initiatives from the 2003 White Paper are still being implemented. Therefore, we believe that the application of genomics in the NHS will be better served if we continue to build upon the excellent work that has already been conducted'.

Report and the Government's response
UK Parliament website |  14 December 2009
17 September 2012 - by James Brooks 
The genetics community needs to work far more collaboratively if it is to meet the challenges of the genomic era, warns Professor Sir John Burn, one of the UK's leading genetics experts...
28 March 2011 - by Seil Collins 
A report published by the PHG Foundation argues there needs to be fairer access to genetics in mainstream medicine. It concludes that the UK's current approach to diffusing specialist genomic knowledge and applications into mainstream medical practice is not effective....
31 January 2011 - by Chris Chatterton 
An audit of 122 NHS sites across the UK by the Royal College of Physicians (RCP) has found that screening for familial hypercholesterolaemia (FH) is very patchy. The report suggests that around 120,000 people have the condition in the UK, but that 85 percent are unaware they have it, which equates to about 100,000 people....
24 May 2010 - by Dr Philippa Brice 
The 2008 'House of Lords Science and Technology Committee Report' on Genomic Medicine failed to adequately reflect the realities of genomics and health, according to a new report released on 18th May 2010...
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