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Progress review of Genetics White Paper
Our inheritance, our future, the 2003 White Paper on genetics, set out the UK Government’s first explicit policy commitments in the field of human genetics. Significant investment was announced in a range of areas including clinical genetic testing, pharmacogenetics research, service development, and education and training of health professionals. The Genetics Knowledge Parks programme aimed to look ahead to the scientific and policy developments that would be needed to bring genetics advances into mainstream health care and public health.
Five years on, the Department of Health has reviewed progress on the White Paper’s commitments. Some important achievements are highlighted, notably the development of a system for evidence-based evaluation of clinical DNA tests through the auspices of the UK Genetic Testing Network, the setting up of the National Genetics Education and Development Centre, and some improvement in the speed and capacity of clinical genetic testing services. The progress of White Paper-funded research projects in pharmacogenetics, service development and gene therapy is also described.
So far, so good, but the report, while acknowledging ‘future challenges and opportunities’ in a general way, fails to offer any real commitment or strategy, on the part of Government, to tackle these challenges. It is clear that five years is far too short a time for significant benefits from investment in genetics to have been realised. Genomics research is generating a flood of new information about associations between genetic variants and common diseases. What is needed is a rational approach, with realistic resources, for identifying and evaluating clinical applications of this information, and for steering health services through the process of change management that will be needed if validated new tests and interventions are to be successfully implemented.