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BSHG welcomes the House of Lords report on Genomic Medicine

19 July 2009
By Dr Rob Elles
Chairman, British Society for Human Genetics
Appeared in BioNews 517
Since 2003, the framework for policy in Genetics in Medicine in the UK has been the Genetic White Paper 'Our Inheritance Our future.' There is no doubt that its implementation helped modernise and broaden the scope of genetics in the NHS. It developed new support structures including the National Genetics Education Development Centre and the National Genetic Reference Laboratories, and established the (short lived) Genetic Knowledge Parks.

The British Society for Human Genetics (BSHG) welcomed the recent House of Lords review of genomic medicine as timely and comprehensive, and picked out a number of recommendations from the report to press the Government for action:

For some time genetics professionals have been concerned with the mismatch between the antiquated information infrastructure available to most Regional Genetic Services and the frightening prospect of handling the avalanche of data starting to emerge from next generation analytical platforms. So the BSHG particularly welcomed the high prominence bioinformatics received in the report and the recommendation to establish an Institute of Biomedical Informatics. The committee identified the need to address the integration of medical and genetic information in the NHS; invest in software, hardware and infrastructure for Regional Genetic Centres; and develop a new generation of bioinformatic and health informatic professionals to lend their expertise to develop genomic healthcare.

Many service providers are offering genetic tests from the public and private sectors; their services often advertised through the Internet and directly accessible to the individual. The BSHG is concerned that some tests of little value are being offered and that the NHS genetic counselling services will have to 'pick up the pieces' when patients arrive worried about the results of tests given with little or no interpretation. The BSHG thus welcomes the report's recommendation that more research into the clinical validity and utility of genomic tests should be supported, and measures to make the usefulness of 'direct-to-consumer' tests transparent giving more power to consumers to help make informed choices about genomic tests. The report recognises that genetic counselling is an essential component of genomic service delivery and is a profession that requires strengthening.

A theme of the second Carter report on Laboratory Medicine in 2008 was the consolidation of specialised laboratory services. The House of Lords report picked this up and called for the centralisation of NHS lab services for molecular pathology, to include genetic testing. Genetic laboratory services are already concentrated in around 25 centres in the major teaching hospitals so the BSHG believes that the long experience of the specialised genetic centres can be a focus and a source of expertise to help develop molecular pathology.

Finally, the House of Lords report called for a new White Paper on genomic medicine, to ensure that the momentum from the 2003 investment is not lost, and that maximum health benefits from genomic science are achieved within the NHS. It remains to be seen what elements of the report are taken on board by the government in the recession. However genetics has continued to develop in healthcare in good times and bad and we may continue to hope that good planning and careful spending will continue in this area.

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