genetics services

Top of the agenda at the first meeting of the joint RCP/BSHG group was the issue of ownership of key genes used in genetic testing. Genetic patenting - the subject of heated scientific and ethical debate over many years - was finally approved by the European Parliament last year, bringing EU law in line with that in the US.

Almost immediately, British genetics services have been faced with the problem of who will pay Myriad Genetics for the rights to test women for the BRCA1 and BRCA2 genes patented by the company. On its website, Myriad currently offers comprehensive analysis of both genes for $2,400 or single mutation analysis, for individuals with a known mutation of BRCA1 or BRCA2 in the family, for $395. Visa, MasterCard and American Express are accepted.

The Department of Health is understood to be negotiating with the company over BRCA1 and BRCA2 testing in NHS laboratories.

The alternative - that genetics centres send their samples to Myriad's Salt Lake City laboratories - would be an administrative nightmare.

'The issue of patenting is a potential threat to the way genetics services will be run in the UK,' Professor Farndon points out. 'Companies could insist that our laboratories pay a fee for every test they carry out or refuse to allow us to use the information we need to test for certain genes.

'Alternatively, they could make us send all our samples to their laboratories, which would introduce huge complications for getting our data back and for counselling our patients.'

The breast cancer gene tests are just the tip of the patenting iceberg. Only relatively old genetic discoveries, such as those for cystic fibrosis and muscular dystrophy, are free from patenting problems. All new genetic discoveries are likely to come with the same financial strings attached as for BRCA1 and BRCA2.