The problem is the Government's changes to the National Health Service, as a result of which many people suffering from genetic diseases may be denied powerful new treatments, according to Professor Malcolm Ferguson-Smith of Cambridge University.
Despite repeated attempts by civil servants to cut him short, Professor Ferguson-Smith told a press conference yesterday of his 'fear that preventive medicine will lose out' in the new NHS. He warned that the 14 regional genetics centres in England and Wales could close. It would be more difficult to provide genetics services under the new system whereby individual hospitals fulfil contracts to be 'providers' of medical services which GPs and other 'purchasers' buy.
Professor Ferguson-Smith said: 'We are now thinking of breast cancer screening. We do not have the infrastructure in the present system to handle that and I can't see funds coming from the purchaser-providers to make it happen.' Once the gene is discovered, he expects that women in families with a history of the disease would come forward for testing but under the new system, he warned, 'to get the grants to do it will take years. Yet these are anxious women who need counselling and advice'.
Research into genetic disease could also be adversely affected by the changes. The existing NHS system had allowed the development of a unique set of records of patients with genetic disorders, which was proving invaluable to researchers hunting the genes responsible for human disease.
Professor Ferguson-Smith's comments echo the fears of support groups for families affected by genetic diseases. The support groups have been worried for some time that elementary treatment - such as genetic counselling - might be threatened by the internal market reforms of the NHS.
Professor Kay Davies, who heads the Medical Research Council's Clinical Sciences Centre, also told yesterday's press conference that the collection of clinical data for genetics studies was 'extremely well organised and needs to be protected against changes in the NHS'. However, Professor Davies was more hopeful: she pointed out that the Department of Health has set up an internal study group to examine the problem.
A Department of Health spokesman dismissed the fears. He said: 'This is ridiculous. The reorganisation of the regional health authorities will have no effect on funding of this kind. Applications will be considered on their merits as they always have been.'
Last November, the Department of Health set up a research task force under Professor Anthony Culyer of York University to review ways in which the NHS funds its research and development. The task force is is expected to report to ministers by the end of the month.
Geneticists expect to see huge numbers of disease-related genes being discovered as a result of an international research programme, known as the Human Genome Project. Britain is one of the leaders in this research which will map out and analyse every one of humanity's 50,000 to 100,000 genes.
Professor Davies headed a group of independent geneticists which yesterday launched a report on how British prowess in gene research can be maintained and developed.
The Human Genome Mapping Project in the UK; HMSO; pounds 9.95.Reuse content