15 December 2009
When the House of Lords published their Report on Genomic Medicine in July 2009, they argued that the pace of change requires a new strategic phase for genomics in health services. By contrast, the Government response published on December 14th largely rehearses past achievements and attempts to make current processes fit future needs without acknowledging the scale and complexity of what will be required.
The Government response explicitly rejects the publication of a new Government White paper on genomic medicine, which formed one of the central recommendations of the House of Lords Genomic Medicine Report. Whilst there is a commitment to establish a cross-departmental Human Genomics Strategy Group (HGSG) which will have responsibility for developing a vision for genomics in the NHS, including limited workforce and bioinformatics planning, in the main the response from Government seems disappointingly lacking in substance.
The Government, for example, does not recognise that current structures and mechanisms to commission and provide genetic testing for single gene disorders are inadequate. Even our present knowledge and capabilities in single gene disorders are not reflected in equitable practice across the UK and there is no doubt that this gap will widen significantly in the next few years. The expectation that commissioning in genomics within mainstream medicine will somehow be improved through World Class Commissioning without setting out in any way how this will be driven, is complacent.
As a further example, as knowledge of genomics and complex disorders gains pace, the response on bioinformatics shows that the Government does not appear to understand the need to start putting infrastructure in place now if the NHS is going to respond adequately to the genomic revolution even though the actual benefits may be some time coming. The Government agreed to 'carefully consider' recommendations about a new Bioinformatics Institute but again does not seem to have recognised the urgency of the need nor the magnitude of the task if we are to develop the necessary capacity and capability to support the integration of genomics information into practice.
It is not our intention at present to provide a detailed commentary on the Government response. Both the original Report and the Government response require and deserve more detailed thought. To that end the PHG Foundation is undertaking a series of consultations with key stakeholders in conjunction with Cambridge University Centre for Science and Policy - a process that will result in a detailed response to the House of Lords Report in late Spring 2010.